This is the online journal I kept to update friends and family on Scarlette’s condition during the 150+ days she spent in the NICU. It is arranged in chronological order. I’m thankful to have this time documented, as hard as it is to read. I am keeping it here in hopes that it helps other parents of premature babies to know that we’ve been there and we made it.
Scarlette is home now (praise the Lord) and you can keep up with her milestones, medical updates and pictures HERE as I document her first year of life
As always, we are so grateful for your love and prayers for our sweet daughter. Love, KA and Jeff
November 7: Scarlette Vonne is born at 8:09pm weighing 1lb 9oz. She’s taken to the NICU, where she is put in the critical unit because of her low birth weight.
November 8: Scarlette is able to breathe on her own! She has the help of a little bubble machine which we call her scuba mask. She is stable.
November 9: Scarlette is stable. She has jaundice and is put under some special lights. They make her look blue so we call her our Avatar baby.
November 10: Scarlette is still stable ♥ She gets some breast milk for the first time.
November 11: Scarlette is stable. She won’t stop flailing her arms and legs so they sort of bind them down. She manages to get her hands up by her face somehow.
November 12: Scarlette is stable.♥
November 13: Scarlette’s first rough day. She has something the nurse calls Bradys. I forget the name of it. Basically her heartbeat drops rapidly and then starts up again. A positive thing is that Scarlette manages to bring her heartrate back up on her own every time it happens. They haven’t had to massage her heart to stimulate it, she’s such a good little fighter. The nurse isn’t concerned, she says this is normal in micro-preemies and that Scarlette is managing it well. It scares the heck out of me though, every time it happens she struggles for breath a bit and alarms start going off above her bed. I have no idea what happens to my heart when she does it.
November 14: Scarlette is stable but she is having problems with her bowels. Basically they quit working. She has a new tube that suctions out her stomach so that it doesn’t get air in it. The nurse says that while it is not great, it’s not horrible and it’s to be expected in micro-preemies. She says it is just Scarlette’s way of telling us that her little body isn’t ready to work that hard at digesting food yet and it should start back on it’s own when she’s ready. They’ve gone back to a nutrient supplement instead of my milk and will do tummy x-rays on her everyday to see how she’s progressing. The nurse took a photo of her with all her tubes and hat removed for us today when she bathed her. The nurses always comment on what a pretty baby she is. They might just be saying that but I like hearing it
November 15: Scarlette is stable today She still has the bowel issue but they are watching it closely and going to try milk again tomorrow to see how she does. They were changing out her lines when I got there today so they let me hold her hand while they did it. She cried and cried and when I’d sing to her she’d get quiet and squeeze my finger. She also opened her left eye today so I got to see her eyes for the first time! They took her off the bilirubin light today so she doesn’t have to have her eyes covered all the time anymore and apparently she is really excited about that She did so good, they expected her to have some bradys while they were working on her just because she was fussing so much but all her levels stayed perfect the whole time. I put up a few new photos
November 16: A rough day for my sweet girl (and for me!) Scarlette is having some episodes with her breathing called apneas. They are worried that the onset of this may be because of an infection so they started antibiotics and took some blood but it will be 48 hours before we know anything. We’re praying a lot that she doesn’t have an infection because she’s just so tiny. Her alarms went off a lot today, which is really tough for me. She also had a blood transfusion, which is normal but makes me sad for her. Especially because now she has lines in both arms and one of her feet. She LOVES to move her arms and kick and she gets frustrated with the lack of range of motion. Her tummy looked a little better today but it’s not great yet, they are going to try to give her milk again tomorrow though. In good news, her brain scan came back NORMAL! yay! This is a very big deal so we are rejoicing in that, even though we are a little afraid of the other stuff. Tonight I got to touch her again and she would cry and fuss everytime I took my hand away. I ended up with hand cramps from touching her sweet fingers for so long
Novermber 17: A better day. She slept a lot from the new antibiotics so that made her have less bradys and apneas. She did have one long apnea that scared the heckfire out of me, normally she brings herself out of them but they had to give her some extra help on that one. Her tummy is looking better but not quite ready for milk again still. And we’re still waiting on the results of the infection. But in fun news: I GOT TO CHANGE HER DIAPER TODAY! I also got to take her temperature. I loved being able to do mommy things. And when they drew her blood she cried until I was allowed to hold her hand, then she quieted down. I love that she knows my voice and touch already. She’s just so precious.
November 18: A partial update b/c some of her test results wouldn’t be back until tonight, so I won’t know til Jeff gets back from visiting her after work. She had a fair day today. Really, I realized today that I don’t know how to rate the days. Overall, not much of a change. She had some bradys and apneas, but brought herself out of all but one (while I was there anyhow) which she had to be stimulated for. Stimulating is just when they have to touch her or reposition her and change her oxygen pressure level to help her regulate her breaths again. Those are no fun for either of us. No change in her tummy, she’s getting suppositories so she really needs to give us a little poop. She had a blood transfusion today so she looks healthier and really pink! I kept saying “You’re turning scarlet, Scarlette!” She has really loud cries for such a tiny body, she fussed and fussed until they let me unstrap her hand and put it up by her face (she likes it there best) and the nurses kept commenting on how strong her cry is. Which is funny because she still kinda sounds like a kitten.
Novermber 19: <– I keep spelling November like that. I am very tired. I apologize that I’m writing this a day late, yesterday was Scarlette’s toughest day yet and I really didn’t leave the hospital much. Yesterday Scarlette had several episodes where she stopped breathing, they weren’t apnea episodes and she could not come out of them by herself. I won’t describe it b/c it was too tough to watch. There is no reason for them except she’s just really tired from her little body working so hard, we’re praying that they stop so they don’t have to put her on the ventilator. She also has not made progress with her bowels, she had an enema but it hasn’t worked yet. She HAS to get her bowels working, they can’t go much longer without giving her my milk and if they give her my milk while her bowels are having issues, it puts her at risk for NEC which is very dangerous to her. She had lots of tests run yesterday and my poor baby is exhausted. We still don’t have the blood culture results back yet. When we called to check on her in the middle of the night she was sleeping and breathing better but no poop. She also had a shot to help her breathe. They try not to give them to her and just put things in her IVs b/c she has no fat so the shots hurt and sometimes that makes her lose her breath. I held her hand while she had the shot and the enema and she’s never squeezed it so tight! It broke my heart for her. One of her nurses grabbed my camera and started taking pictures yesterday so those are uploaded.
November 20: A better day. She had less breathing episodes than yesterday. We did find out that she does have an infection but the results aren’t back as to what the infection is yet. She will start some new antibiotics in the meantime. We also found out that her little blood vessel has shrunk some, it’s gone from large to moderate so we are still hopeful that it will close on it’s own. We didn’t get to interact with her much today because she needed lots of rest so she was in the dark with the cover over her isolette the whole time. We did get to see her open her eyes all the way, it was Jeff’s first time to get to see that and it was one of the moments I’ll never forget, seeing him look into his daughter’s eyes. He also got a little finger squeeze today, and I got nothing so it was totally a daddy’s girl day
November 21: Happy 2 week birthday Scarlette! Not much change today. She had another blood transfusion (Thank you to our friends and family donating blood to her, we are grateful! I will be in touch with those of you who have offered and haven’t heard from me yet very soon ) and started a new antibiotic so she rested pretty well today and although she had a few scary episodes, they were less frequent. The nurse had to put her IV in her knee today because she didn’t have any other place for it and that made me the most sad of all. We did get to give her a blanket I had slept with b/c they say that she can recognize my scent and that it helps to calm her. She had a tiny bit of poop last night and another suppository before we left so we are hoping that when we call tonight before bed it will have worked. Tomorrow she has another brain scan so we are praying for that to come back clear. I had some questions today and the nurse told me that basically, she’s a very ill baby but she’s a stable ill baby. I’m praying so hard for her to keep being so strong. The nurse today was so kind and took photos of Jeff and I with her so I put those up here. We’re so in love with her.
November 22: Today I got to see Scarlette’s face when they took off her tubes and hat for the scan. She is so beautiful. She looks like a tiny little clone of her daddy. She had a consult about her tummy issues and they gave her some dye to see how it moved through her intestines. It seemed to be moving just very, very slowly. This will tell us if she has a blockage or not. She does have some air in her tummy and is very gassy but the surgeon is hopeful it will clear up with the help of some enemas and not surgery. She still can’t have milk but she is on a high calorie liquid and is managing to not lose weight. She had the world’s tiniest poop when she pushed out her suppository, she refuses to keep them in, she is so stubborn! Her infection is cleared up but she is still on antibiotics. She also started a new medicine for the enlarged blood vessel in her heart. She had a bit of a low blood count so she may need more blood transfusions than we originally anticipated. She had one of her feet lines removed today and she was so happy. She kicked her leg around all morning long. She really needs to rest but I admit to being happy to see her kicking for a little bit because I know she loves being active and it hurt me to see her unable to move her feet for so long because of the large bandages. She slept great in the afternoon though, and her breathing was pretty stable today I called to check on her tonight and no more poops but she is breathing and sleeping well still
November 23: Some good news today: a normal brain scan, the dye has moved further down her intestines (no poop but movement is encouraging) and she gained a wee bit of weight! Everything else is about the same. It’s tough because she’s so frail that every day is tough for her but I am so grateful for some good news today! I spent the day singing to her and she spent the day kicking her feet and pulling off her temperature probe line She’ll have another tummy xray in the morning.
November 24: TWO POOPS! The dye has moved even further down and her belly is less distended and blue. Everything else is about the same, but we’re just celebrating TWO POOPS!! I got to change her diaper today and take her temperature and just generally interact with her for a long time, the longest period yet Can I just say again, TWO POOPS!!!
November 26: Oops, sorry for missing the Thanksgiving day post! I am so tired from this pumping schedule, I fell asleep! We had much to be thankful for this year! We spent our first holiday with Scarlette and then put up our tree. Scarlette has had two very good days in a row. She’s breathing very well and having very few A’s and B’s (in NICU speak that means apneas and bradys. I realized I was conversing with the nurses in NICU shorthand today.) She’s also having bowel movements but not totally on her own yet, she’s still being giving suppositories, medicine and the occassional enema. They have cut down on the amounts of those, however, and it’s still very encouraging because she went so long without pooping even WITH all those in the last week. Her tummy is doing well enough that they tried her on my milk again today! We’re very excited about this because she has been gaining weight (she weighed 1lb 11.5 oz yesterday!!) without being on my milk, so we’re hoping that she’ll be able to tolerate it with no tummy complications and have it help her grow She’s on a new slow-dose medication to close her PDA (the extra vessel on her heart) and we should have the results of her echo in the morning. We’re praying it will close up soon because the medicine is very difficult on her kidneys and if it doesn’t close after another round of medicine, she’ll have to be sent to another hospital for surgery. Obviously there are many reasons we don’t want that and her doctor isn’t keen on it either. We’ve been able to have a lot of “touch time” with her lately. I don’t know if I’ve mentioned but we can’t hold her or even stroke her, micro-preemies are irritated by soft touch so we can only firmly lay a finger on her or let her hold our finger. It’s very counter-intuitive to how you want to touch your baby! That’s all the touching we get, unless I’m changing her diaper, so we are thrilled anytime we are able to bond with her in that way. She definitely knows my voice and will turn her head towards the sound of it or calm down from crying once I start talking to her. The nurses all say she has attitude, she definitely lets them know what she wants. I’m so proud of her, she’s such a tough little girl and she’s working so hard. I know she’s going to have rough days again during this journey but since we’re taking it one day at a time, I’m really reveling in how good she was today. (New pics)
November 27: Scarlette is getting a blood transfusion today. She was having some A’s and B’s from her low blood count but she should feel lots better after she gets some fresh blood. Stephenie Meyer is probably totes jealous. She seemed to tolerate my milk well yesterday and she had a poop so they are trying her on more today and we’re hoping she goes potty again tonight. Her echo came back showing that her PDA is smaller but not gone. She’ll have another on Monday and we’ll know then about her next course of treatment, which we’re pretty sure will be another round of meds. She still weighed the same so we are encouraged by that as well She was a content baby girl today and we took this video of her opening her eyes! We love looking in her eyes. Normally we end touch time early, because Scarlette is very easily stimulated. While we love interacting with her, we never want to overstimulate her and she tends to have more A’s and B’s when her isolette is open (she gets really mad when the other babie’s alarms go off) and we love her to pieces so we typically ask them to close her up before our time is out (which our touch time only lasts about 10 minutes anyhow!) Today is the first day that they had to come let us know it was time to close her up, because we couldn’t stop looking at her little eyes.
November 28: Well today’s update is tough to write. It is Scarlette’s 3 week birthday and she had to be put on the ventilator. Overnight her stomach became incredibly distended, the worst we’ve ever seen it. She was in a lot of pain and so they gave her pain medicine. Unfortunately, thet think that either the pain medicine or an infection caused her to stop breathing repeatedly. They tried unsucessfully for hours to get her breathing stable but finally had to intubate her to give her body a break. They had to quit feeding her because of her stomach issues. The problem with her stomach is that they don’t know what the problem is. She doesn’t have NEC but she isn’t able to pass anything through her bowels right now and her stomach keeps filling up with air. They called in a surgeon who will see her in the morning. They want to do a special test on her but they don’t want to do it until the dye from the previous test leaves her system. The surgeon will determine if they need to go ahead and risk the test anyhow or wait a few more days to see if she gets better on her own. To do the test they will transfer her to another hospital that is much further away from us. I want her to have the very, very best care but if they do transfer her, they will keep her there until she is able to feed again, which could be a very long time. So this is a physically really bad time for Scarlette and emotionally a very hard time for us. We just want her to be better. She’s so sick right now. The ventilator actually LOOKS less scary than her CPAP scuba mask that she’s been wearing and we are able to see her face now so I do have some picture to share here. Update: as I was typing this the doctor called- Scarlette still wasn’t breathing well on the respirator so they moved her to a new type called an oscillating respirator. She says she seems to be a little more stable on it but that she thinks she will have to be moved to the other hospital tomorrow. My heart is breaking for our daughter.
November 29: First, thank you for keeping her in your prayers today.I had called the hospital throughout the night and she kept getting continuously worse. Her stomach was so distended that it had put too much pressure on her diaphram, making her breathing issues worse which is why they moved her to a new type of oscillating vent (which I would like to say, is a terrible thing to witness your baby on even if it is helping them because it just causes them to shake constantly). I went in first thing in the morning and she was just in so much pain. After her xrays and evaluations, the doctor sat me down and told me that they did not know what was wrong with her and that there was nothing more they could do for her there. They told me that her condition was critical and they wanted to move her to a surgical NICU ASAP before it became an emergency. They said she was getting worse so quickly that there wouldn’t be time to do the tests we were hoping for and that they would just do exploratory surgery to locate the cause of her bowel issues. We agreed to have her transferred. In order to do that, they had to wean her off the oscillator and back on the the traditional vent. They gave her a sedative and I was able to ride in the ambulance with her. Once there, she was wisked away for X-rays and to see the surgeon. He determined that she had become stable enough again that they would try the test first before surgery. Originally they were supposed to do it at her bedside but ended up having to send her to radiology. The issue with sending her out for tests is that she is so little, it causes her body extreme stress to move her so much, plus she gets cold easy. She did well during the test and the dye caused her to pass a large piece of stool. It did make her very cold and so she had a tough time regulating her breathing afterwards but she is stable now. When the surgeon looks at the scans he will be able to tell us if it is a blockage or something else. Best case is that it was a blockage and she moved it during the test, other possibilities are that it’s a blockage or something else and she’ll need surgery to fix it. If there is no blockage they’ll start testing her for other things, such as cystic fibrosis. We’re working out my housing situation to get me closer to her, the hospital she is at now is over an hour from us. UPDATE: I just called at 1am to check on her. They’ve had to put her back on the oscillating ventilator because she had too much carbon dioxide in her blood. So they’ve sedated her again and are giving her continuous pain medicine. We still don’t have a report from the surgeon but she has not pooped since the test so they think she will likely have surgery tomorrow. They also had to start a foley catheter because her urine output is low. This is the first time that’s happened, she’s normally a great little pee-er. They said she’s stable and comfortable at the moment. Me, not so much.
November 30: Today the nurses are calling Scarlette a “touch me not” because she has been desaturating whenever they touch her to work on her. They think she is really stressed from all the activity yesterday. Her test from yesterday didn’t give them any anwers. She had a rectal biopsy today. They thought she might have something called hirshsprung disease. But before they did the test she had one unstimulated poop and then she passed a lot of poop during the test. So they told us that they are basically stumped as to what is causing her issues. We won’t have the results of the biopsy for 24 horus. They also told us they can no longer treat her PDA (extra heart valve) with medicine and that she has to have surgery for it. Surgery is scheduled for tomorrow morning at 10:30. It’s a surgery done on a lot of preemies but everything is riskier on Scarlette because she is so tiny. In addition, the extra risk is that they currently aren’t sure they can wean her off the oscillator and on to the traditional ventilator for the operation. The oscillator shakes her so obviously it’s not an ideal situation for someone to operate on her while her body is vibrating. We’re praying for steady hands because the surgeon told us that if the vessel ruptures, she will not make it as there is not enough blood in her body to replace quickly enough. Signing that consent form was the toughest thing I’ve ever done. There is no other option though, she has to have the surgery and soon. There is a slight chance that once her blood flow is restored, it may stimulate her intestines to start working. We are really hoping that since she has to have the surgery, it will heal everything because wouldn’t that be lovely All of her other vitals are good and her urine output is good again so it’s really just a matter of figuring out how to fix her tummy and having a sucessful operation tomorrow. We are so grateful for your love and prayers, I can’t even tell you.
December 1: Surgery day. Scarlette had surgery this morning and it went very well. They had to operate with her on the oscillating ventilator so we are very grateful to God for a surgeon with incredible skill. She is having a hard time recovering from the surgery, her blood pressure keeps dropping so she is on medicine for that for the first time and it kind of messes with her heart rate. She’s in the process of having a blood transfusion in hopes of that getting her stable. Basically, her body just doesn’t have the reservesto recover well from major surgery, plus the last few days have been very stressful on her. So now we are praying for her to level out and become stable again. She is on pain medicine so I don’t think she is hurting right now. She did open her eyes and kick her feet at us for a minute before surgery. Her breathing is very good, she’s still on the oscillating ventilator to keep her lungs from working too hard but she is on room air and not receiving extra oxygen. Her tests came back negative for Hirshsprung disease. Some good news- she had THREE unstimulated poops today! So the doctors are thinking they may run a few more small tests but mainly watch her and hopefully she’ll keep going potty and they can try a feeding in a few days. I won the lottery for an overnight room tonight so I am able to stay here with her through the night. Also, I am typing this on the hospital computer in the parent’s center and it is really slow so forgive my errors, I am too tired to fight the copmuter to fix them Today I have not been able to keep it together, I have so many emotions and amongst them is a great love for you who so love my daughter.
December 2: She is still having a very tough recovery. Today her kidneys have given her problems. She hasn’t been able to urinate, which is a big concern. I haven’t put up any pictures because she is so swollen that it is very sad to see. She doesn’t really even look like our Scarlette right now because she is retaining so much fluid. In fact, her weight before surgery was 1 pound 11 ounces. Her weight with all the additional fluid is over two pounds, that’s how bad she is. They started her on a diurectic (sp?) and hopefully that will help her kidneys start working again. They have not yet been able to get her blood pressure stablized without medicine and they can’t wean her off the blood pressure meds until her kidneys are better. They can’t wean her off the ventilator until she’s off the blood pressure medicine. It’s a vicious cycle. They told me today that for every one step of progress, two other things go wrong. In some good news, her tummy x-ray looked very good today! She had four little poops today (hooray!!!), so where we were praying “poop, Scarlette, poop!” now we’re praying “tinkle, Scarlette, tinkle!” It is so tough to see her like this. She is sedated but when I talk to her she will open her eyes and kick her feet at me. She needs her rest so mostly I just sit quietly with her and pray for God to heal her little body.
December 3: Guess what? I have positive things to update today! It feels like forever since I’ve had more good than bad in an update. Apparently Scarlette appreciated everyone’s prayers for tinkling because today she decided to pee…and pee and pee and pee! She also had a little poop last night so this morning, my first text message to Jeff looked like this: PEE! POOP! Her brain scan came back normal and her tummy/bowel x-rays look better. They were trying to wean her off the blood pressure medicine when I left today, she was almost half down on it. They think she might have another infection but we don’t know for sure yet. She’s still very swollen and her PH levels aren’t quite back to normal yet. She had another blood transfusion today. So pretty much the same: she has to pee to improve her blood pressure, she has to be off the blood pressure meds to be off the oscillator and to get breastmilk (and be considered stable), she has to take the breastmilk and poop to be able to go back to the original hospital. She’s definitely getting back to herself, she kicked the nurses like crazy when they worked on her today, even though they had her sedated. I was able to touch her today! It was the first time I have been able to touch her since Sunday night. They lowered the side of her bed and let me cup her tiny little head in my hand Also, I was very upset this week because the new hospital had lost her blanket. I had left very specific instructions to keep it with her and it had her name on it. Every day I’d ask if they’d found it and they hadn’t. I got more and more upset each day because they had told me that her having a blanket that I’d slept with was comforting to her because it had my scent on it. They told me that keeping it near her face would help her to self-soothe when she got too worked up. So I was beside myself that the week she was in the most pain was the week she didn’t have her security blanket. I was in tears this morning and I am so grateful to her nurse today for not treating me like I was being ridiculous and finding it for me. I’ve been reading to her each day. Today I read her The Giving Tree. I remembered that being a sweet book when I was little, but as a parent that book is TOTALLY sad! Note to self: don’t read her books that make you cry I’m praying so hard that her blood pressure will get to where it needs to be and she’ll be able to start recovering without being in pain anymore.
December 4: No change since yesterday. They were able to wean her blood pressure meds a bit, which is good. Hopefully she can be totally off them soon. She peed and pooped so YAY! She is still REALLY swollen and they have her pretty sedated still. We just sat with her and read and sang to her and prayed that very soon they will be able to tell us that our baby girl is stable. New pictures today- you can tell how swollen she is in these, her little face looks painful it’s so swollen from retaining fluid.
December 5: Scarlette is four weeks old! I am overwhelmed with gratefulness and joy that she is still a part of our lives, that we still have her. No real change since yesterday, she’s slowly recovering from surgery. They took her off blood pressure meds this morning but put her back on tonight. She is much less swollen though. AND I got to hold her hand today (and by hold her hand, I mean she held my finger for a bit) which always makes me really happy. We’re so in love with that little girl. I can not wait to be able to hold her.
December 6: Scarlette got moved off the oscillator and on to the regular ventilator! She’s on the ventilator to hold her lungs open so that she doesn’t burn calories when her lungs open and close, but she’s able to be on room air which means she doesn’t need extra oxygen supply. YAY! She is still on the blood pressure meds but not for her blood pressure, but because she quit peeing again. I called tonight and she had started back so hopefully she’ll have a good output tonight. Plus she had two poops today! We’ll find out tomorrow when she might get to start feeding again, right now she is just on liquid nutrients. She’s still very swollen from retaining so much fluid- her weight was 2lbs 8 oz but they said her ACTUAL weight is about 1lb 14 oz. So that gives you an idea of just how swollen and puffy she is, poor baby. But look how sweet she is. We read some books and sang today and I got to have a little touch time with her. She’s still sedated, but less so. She opened her eyes today when I talked to her. I love that there is such a connection between us. It makes it hard to leave her at night, because I know that she knows when I am there. Thank you for checking on her progress and praying for her. I know she’s not out of the danger zone yet and I am so appreciative for the love and support, and I also am grateful to get to rejoice with y’all for little steps along the way.
December 7: Here is how the NICU is so up and down. I went in this morning and her blood gas was toxic, they talked to me about putting her back on the oscillator. I was really upset, that is a huge step backwards. Within a couple of hours, they tried a new treatment and she was totally better and THEY LET ME HOLD HER. I went from getting terrible news to the best news ever in just short time. That’s how it is every day. Here’s some TERRRIBLE NEWS, here’s some GREAT NEWS, here’s some TERRIBLE NEWS…etc. Normally it takes a huge emotional toll on me. Today it did not because I GOT TO HOLD HER. Today I am just…words can’t describe how I feel. Scarlette has been with us thirty days and this is the first time I’ve held her. The first time I’ve done more than touch her legs or her hands. I can’t hold her like a baby yet, I don’t even hold HER really, I held all of her bedding. Literally, all of it, her womb positioner, heating pad, blankets and all of her vent tubes and IV wires. I was shocked at how light she was, I was suprised at the lack of weight in my arms. She loved being held, they were able to cut her vent settings in HALF while I held her. She responded so well to it. She has barely opened her eyes in days but she opened them and just stared at me as I sang to her. They told me I’d only get a few minutes but I was able to hold her for an hour because she did so well. Right after I finished holding her, the little boy across from her coded. I saw them use a crash cart on a baby. It was the worst thing I’ve ever witnessed. I sat outside the door and prayed for that baby and hoped that I never have to see that again. (P.S. he was stable when I left) I am so thankful for progress, I am so thankful for good blood gasses, I am so thankful that I got to hold her.
December 8: Today = progress. Off Dopamine, less pain meds, working on weaning her off the ventilator. She is peeing well again and losing lots of her water weight. She looks like our tiny baby again. She was 1carrying about an entire pound of just fluid retention in that tiny body! All that fluid weight was pressing on her lungs and causing her not to breathe well so we are really happy that she is peeing it all out and getting tiny again- it seems like a backwards thing to be happy about but we need her to gain real weight, not water weight! She was a little touch-me-not today so I didn’t get to hold her. Some of you asked about kangaroo care- yes I will be able to do that with her once she is over 2 pounds and off the ventilator. Right now the I am techincally allowed to touch her whenever I want but micro preemies actually don’t like to be touched. They will let you know that by stopping breathing. The week of her recovering from surgery she was really fragile and the decision was made for everyone (medical staff included) to touch her as little as possible so that she would have less episodes of apnea. The beautiful thing is that even when Scarlette holds her breath every time the nurses and doctors touch her, she almost never does it when I touch her. But even if she doesn’t respond badly to my touch, she tends to wake up and look at me or kick her feet at me. And so since touch can be stimulating and we’ve been trying to let her rest to heal better, I decide each day how much I will touch her depending on how she is doing. If I think that it is a day where my touch is soothing to her rather than stimulating, then I will hold her hand. If I think that touching her wouldn’t be best for her and would be for my own emotional fulfillment, then I refrain. Those days are so hard and last week I went almost a full week without getting to touch her at all. It was awful. So just so you know, her doctor’s aren’t meanies, it’s just that she’s not a normal preemie that can have the kangaroo care yet. In micro preemies, they can be highly irritated by having their skin touched. I did her touch her little foot after they pricked it to take blood today though I do like to hold her hand whenever she gets a shot or a blood prick if I can, she squeezes really tight when they stick her
December 9: About the same as yesterday, still working on weaning. She’s back to having some brady episodes (when her heart rate rapidly stops) as they wean her. She is waking up and hating the tube in her throat so she drops her heartrate when she is uncomfortable. They are hoping to have her off the ventilator by Saturday, which would be great! They gave her Methadone today to keep her from having withdrawals from her pain meds. It was kind of funny b/c I realized that yesterday when they took her off dopamine I sent Jeff a text message that said “off the dope!” and today I sent him one that says “starting meth.” I am pretty sure someone randomly scrolling through his text messages would think I had a problem I was able to hold Scarlette for an hour and a half today It was amazing and I am so grateful for the time with her, I want for nothing when she is in my arms. It amazes me how settled she is when I hold her. Tonight as you pray for Scarlette, I’d like to ask you to pray for a family sharing the NICU with us. They are saying goodbye to their baby tonight. My heart is breaking for them as they live out my greatest fear. I am praying they are surrounded by peace and love, because I can’t imagine that anything could help me breathe again if I were in their place.
December 10: Scarlette decided today that she hated people touching her and so sadly, she does not get to come off the ventilator yet. She had too many apneas and bradys when they would do her 4 hour assesments and so that means a few more days of lung rest for her. She was weaned very low last night and they kept her there today. She is still not requiring extra oxygen unless she apneas so that is very good news. She has not pooped in 48 hours so we are praying for poop again! :p They started her on breast milk again today. She tolerated the first syringe of it well and we are hopeful that she will continue to do so…and then that she will poop! I didn’t hold her today because she needed to rest so I got to help swaddle her in a new womb positioner Then we covered up the isolette with a thick blanket to trick her into sleeping. She opened her eyes for me today when I sang to her though. She has such pretty eyes.
December 11: Same as yesterday except…3 poops! Yay Scarlette! I was able to hold her today and TODAY I took the good camera for pics It was great because today I just held her in a blanket so I was able to really hold her and feel her. She weighs about 2 pounds now and she did well with the breastmilk and so they increased her feeds. She still had too many apneatic episodes to take her off the ventilator but she is on room air still, meaning that the ventilator is holding her lungs open but she is not requiring extra oxygen. She’s off all meds now except for the occassional dose of methadone to help her relax since she isn’t on pain meds anymore. The last few days have been tough for me just because of seeing the other NICU babies have bad episodes, Scarlette’s doing well but it’s a tough place to be every day, watching other families go through the things that you are praying doesn’t happen to your child. But a great thing is that today when Jeff came, Scarlette responded to his voice for the first time! He started talking to her and she opened her eyes and looked around until she found where his voice was coming from and then stared at him for the longest time. It was a beautiful moment, I know she knows my voice well now and I am so excited for him to be able to experience these little BIG moments of bonding that we get with her.
December 12: Same story, different day She is able to increase her feeds by 1/2 each day, she is off all meds except an occasional dose of methadone and is slowly weaning off the vent. She has SIX poops yesterday! She is still having apnea episodes but they are not low episodes so we are praying they clear up fast so she can get off this ventilator! She is more alert now, opening her eyes and kicking her feet. I am able to change her diaper and such now, which makes me so very happy I am praying for patience and grateful for baby steps of progress
December 13: A rough day for our sweet girl. She has an excess of secretions in her lungs that is making it hard for her to breathe and to oxygenate. Sadly, they had to up her vent settings and increase her oxygen, which is a very big step backwards for her. Her blood gasses were not good either. We’re not sure of the cause yet and they are going to try a few different things to see if they can clear it up. The terrible thing is that she is really uncomfortable and hurting. She’s been weaned off sedation and pain med drips so she can only have some administred occassionally. It’s really tough for me to see her in any sort of pain. It seems like when one thing starts working, something else stops. Please pray for healing for her lungs, it’s vital that she be able to breathe. Thank you, will all my heart.
December 14: Thank you to everyone praying for our daughter. I know a lot of you saw my tweet this morning about her being much worse and my peace today was found in knowing that so many people were praying for her. So the bad news first: Scarlette has developed Bronchopulmonary Dysplasia or BPD. Here is a full explanation of what it is. It’s common in preemies but extra dangerous in tiny babies like Scarlette. A basic synopsis is that her lungs are trying to reject the ventilator and creating excess secretions. This causes her not to be able to oxygenat. The air in her lungs show black on an xray, fluids show up to be white. This morning her x-ray showed what they call “white out lungs” meaning very little black was visible. Unfortunately, this condition makes her dependant on the vent- it’s a vicious cycle. Right now she’s being treated with Albuterol, steroids, suctioning and chest vibrations. They also have her laying tilted down and on one side to help drainage. BPD causes long term damage to the lungs, the longer it progresses, the worse it gets. She’s having many apnea episodes and is very uncomfortable. This morning she was trying to cry (she can’t make sound with the vent in) and it was the most heart breaking thing I’ve ever seen. Most babies develop BPD by 4 weeks of age but as we all know, Scarlette likes to do things on her own timetable It’s so frustrating, she was so close to being off the vent and now she is really sick again with no foreseeable time of her coming off. It’s even more frustrating knowing that she wasn’t intubated after birth, she breathed so well for so long. This afternoon she had better blood gasses and the x-ray showed less white so hopefully that means the treatment is working. Its just a huge step backwards and scary because the short term and long term effects of BPD can be very, very bad. Here is some good news: she is tolerating her feeds well so they have increased her breastmilk to 3ml per hour. Eating and gaining weight is one way to help the BPD. She is also a poop and pee champion right now so we’re hopeful that will continue. I did get some sweet pictures and videos of her that I will upload a bit later. She held my finger while I sang to her and looked at me for a while. I love that little girl to bits and I want her to get better so that I can have her home with me and hold her whenever she wants. And I really, really want it not to hurt her to breathe.
December 16: Sorry I missed a day, I did try to post from the hospital but the wifi was acting up and I didn’t want to spend time away from her to try and work on it. Not much change today. The good news is that her lungs are not worse. Not better but not worse is at least a positive thing. The doctor said it will just take time and we won’t see an improvement anytime soon. The bad news is her belly is slightly distended and pressing on her lungs and they can’t increase her feeds She does seem to still be tolerating the feeds though, she has no residuals (leftover milk in her tummy) . The doctor said he just didn’t want to push her too much. She isn’t pooping on her own again, although she is when they give her a suppository. That is good but she needs to do it on her own for them to increase her feeds. She can’t grow new lung tissue unless she gains weight, which she can’t do if she isn’t eating more, which she can’t do if she doesn’t poop. CRAZY. The other bad news is that she’s still in so much discomfort. It’s so sad. She can’t get her O2 levels stable, she will high sat one second and low sat the next. She keeps pulling at her tubes and cords and just generally is upset. They are trying to keep her heavily sedated again, which is good for her pain level but sad overall. The worst part of today was that they put an IV in her foot and it went in fine and then the vein blew. Seeing that much blood come out of my tiny baby was one of the worst things I’ve emotionally experienced yet. I went in the nursing room and vomitted. The second attempt at an IV went smoothly so that she was able to have a blood transfusion today and she rested a little more comfortably after that. Yesterday was her 38th day of being with us and it was the first day that I was able to kiss her face She loves being sung to and currently prefers Away In A Manger. She’s also a big fan of old church hymns and Taylor Swift. The girl has electic taste in music. She’s also started doing this thing where she puts her hand over her eyes when the light is on her, which is so cute. I put some photos of it online. Also, she looks really uncomfortable in the photos because she is, she’s laying tilted down to one side to drain fluid from her lungs. She weighs a bit over 2 lbs right now and so she’ll soon fit into some of the sweet preemie hats her friends have made her She’ll be the most stylin’ baby in the NICU. Thank you for your prayers and words of encouragement. I am weary indeed and I’m sick of being in the NICU but I am so in love with her and don’t want to be anywhere in the world but right by her side. I just wish that was in our house, with her healthy. That day can not come soon enough for me.
December 17: I fell asleep without posting! So sorry. Her xray was a little better, they tried to aggressively wean her off the vent but she didn’t take to it so they had to go up on her settings again. She’s mostly pretty sedated because when she wakes up she freaks out at having the tube in her throat So not much change really. No feed increase but still no residuals and she did have some bowel movements. Tomorrow she’ll have an abdominal x-ray to see why her belly is so distended.
December 18: We got some good news today! Scarlette’s chest and abdomen x-ray looked good so they decided to wean the vent some more and also increase her feeds. They had been going up 1/2 ml each day before they stopped but she was doing so well that they went up 1 today! So now she is at 4ml an hour, which is excellent because a full feed is 5ml an hour. She’s off all her TPN and lipids (liquid nutrition + fat emulsion) and only getting her nutrition from milk now. Hopefully this will make her nice and fat She was pooping fine on her own, then today she slowed down again. So we still need her to keep that up because everytime she slows down, they can’t increase her feeds. She responded well to weaning the vent pressure, but not the rate. She’s taking things slow, she’s a chill little baby So all of this is what needs to be happening and we’re praying it continues, because things change so fast in the NICU. We want her to get better so badly. And if she could be off the ventilator by Christmas? That would be the BEST CHRISTMAS EVER. But my favorite part of today? MUCH LESS PAIN MEDS! She wasn’t giving indicators that she needed a lot of sedation or pain meds. Two days ago she was getting Fentanyl and Ativan every few hours and as soon as one wore off she’d freak out. It’s the worst, seeing her tiny body in pain and not even being able to hold her to me and comfort her. Today she seemed very content and they only felt she needed them on a few occassions. She opened her eyes when we started talking to her and as soon as she saw Jeff and I she tried to get out of her Snuggli wrap. She worked so hard and got her hands loose and kept stretching them towards us as we talked to her. That kills my heart to see her reach for us and not be able to scoop her up. It fascinates me that she knows us, I sit with her all day and watch her flail and hit away the nurses hands when they assess her or roll her eyes around unfocused when the light hits her. But with us, she looks around until she locates where our voices are coming from and just stares at us and reaches for us until we touch her. The preemie book they gave me wants to tell me that her squeezing our fingers is a reflex, but it’s wrong. Because I see her have reflex movements and watch her squeeze the nurses finger. And then I see her with us, with her fluid movements and she doesn’t just squeeze our fingers, she holds on. I know she knows us.
December 19: FULL FEEDS!!! *happy dance* Today they weaned the vent rate, which is good because yesterday they weaned pressure. I am praying so hard for her to come off the vent because she is growing and that means the vent tube is getting too small. If she gets much bigger and isn’t off the vent, they’ll have to re-intubate her with a larger tube. I don’t want her to have to go through another intubation She still needs to poop a little more but she is making progress in the right direction. It’s honestly not common to be doing as well with the BPD as she is given the state of her Xrays just a few days ago! My little fighter is so thankful for all of your prayers for her.
December 20: Up to 6ml on feeds, which is great. Gaining tiny bits of weight each day! They were able to wean a little on the vent and we’re hopeful that her PICC line will be taken out this week. So baby steps of progress! They told us today that she could go back to her original hospital at the end of the week and we were so excited. Then our insurance denied the transfer. Since I’m currently only getting to live with my husband a few days a week, we’d love her to come back to her original hospital. Even though it’s 40 minutes away, it is next to Jeff’s work which makes transporation for our one car household MUCH easier. It takes over twice as long to get to the hospital she is at now. And since we feel confident that she would be in the best care at either hospital, we’d love her to be closer to home. She was only transferred because she needed surgery and now that it is not surgically necessary for her to be there, having her nearby would be fantastic. Scarlette has a social worker b/c she was born weighing less than 1200 grams so she and the NICU case manager are trying to persuade the insurance company to work with us on moving her back. If she ends up not being able to move back, we won’t be too disappointed because we know she’s getting good care where she is at. But it’s very difficult for us as husband and wife to be apart from one another at a time when we’re relying so much on each other emotionally and it’s sad for Jeff not to be able to see her as often. So it’d be a nice perk to come home. On the other hand, her being in an ambulance still gives me huge anxiety, despite the fact that she did fine the last time
December 21: The only change today was that she was able to go to 7ml on her feeds. 5ml is considered full for her and 8ml is her max. When I arrived they told me they thought she might have a hernia on her stomach that needed surgery. She had two surgical consults. Finally in the afternoon, the surgeon who operated on her previously came and looked at her and said nope! No hernia, no need for surgery. Praise the Lord! Mommy was feeling scared about that! She had a tough day pain wise. She really hates the vent tube but she’s not better enough to take it out. So she tries to pull it out. We tie her hands down, which is terrible because she likes them by her face, but somehow she gets them up there anyhow. When I got there, she had managed to pull the tape off the left half of her face and get her hand under the tube, which made all her alarms go off. It is not fun to arrive in the morning to your baby alarming. Once they fixed it, I offered her my finger and she held onto it with both hands, squeezing it while she cried until the pain meds kicked and she fell asleep. It’s beautiful and heartbreaking all at the same time, to have her need me like that because she is hurting.
December 25: MERRY CHRISTMAS! The holidays kept me from updating a bit- we got a GREAT Christmas present- Scarlette was able to be transferred back to her original hospital! She is so much closer to us now! This is great because to get to come back to this hospital she had to be much better and not be a surgical candidate anymore! Hooray! She had a rough day after the transfer because she is not a fan of riding in ambulances. But she’s been doing great since then! They’ve weaned her vent settings a lot in just a few days. She’s tried to extubate herself twice so they are attempting to aggressively wean her again and this time she is responding well to it. Extubation is tentatively set for Monday!! They also removed her PICC line today, which is great news! No more IV! And she’s not required any pain meds at all since the move over. We had a great visit with her today. She has started sucking her thumb or a pacifier under the vent tube! I am thrilled about this because learning to suck/swallow will be her next big hurdle. She has an important eye exam this week to check for ROP so we’re praying for a good eye exam and a good extubation. I’ve put new Christmas pictures up here! It SNOWED here in Georgia today! Scarlette’s first Christmas is a white one! It truly is a very Merry Christmas for us. We are completely blessed. Wishing y’all peace and happiness, wonder and joy on this holy day. All our love, J+KA
December 26: Another good day. Tough for me b/c we got iced in and I had to wait until the afternoon to go see her! Broke my heart this morning. But she is doing well, she was weaned more on the vent and if her blood gasses stay good they will attempt to extubate her tomorrow. She has been resting well with no pain meds and is very alert and active when she is awake. She is tolerating feeds well also. There are a few big hurdles left for her but we are reveling in her good reports and progress thus far.
December 27: Scarlette was extubated today. She’s having a bit of a tough time with it. She is pulling the CPAP off her face a lot, which causes her to brady and apnea. She had a lot of episodes today so it was a really tough day. Her first blood gas was good but the second was a little high so they’ll know by the next if she has to be reintubated or not. Please pray for her blood gasses (the level of carbon dioxide in her blood) to level at a good place. Her throat is requiring special medicine treatments because it is very swollen from being on the ventilator for so long and if she has to go back on it, it will cause damage to her. And she is requiring more oxygen than she has been, which isn’t great for her eyes. Today was a long, tough day. Thank you for praying for her.
December 28: Scarlette’s been able to stay on the bubble CPAP so far! She does really well on it when she keeps it on her face. Little girl tries so hard to get it off! She knows what she’s doing too, she tries to sneeze it out, then she’ll toss her head side to side and when that doesn’t work she just reaches up and pulls it off her face! Then she desats because she’s not big enough to breathe on her own yet. I keep telling her that but she is stubborn. Her chest xrays aren’t worse but they aren’t better either, so she’s requiring more oxygen than she used to.Today was her eye exam. It went well, her eyes seem to be developing normally, she has about 70% of her retina developed so far. The eye exam is really painful so she had a tough time with that. She had another blood transfusion today as well. She held my hand and cried herself to sleep after the eye exam. It was the sweetest, saddest thing ever. Her little voice is really raspy and hoarse from the ventilator scratching her throat.
December 30: A great day! Why? Because I got to start Kangaroo Care (skin to skin) today! I held Scarlette to my chest for TWO HOURS today. It’s the first time I’ve held my daughter without all of her blankets and bedding. I was so excited because A) I got to hold her and B) it has been proven that Kangaroo Care is so very good for the babies. And Scarlette loved it. She did amazing with her breathing the entire time I held her. And they have turned the pressure and oxygen levels down on her bubble CPAP. If she keeps doing this well next week, she might be able to transition to a nasal canula. Today we had storytime (we’re reading The Secret Garden right now) and then we did touch time and Kangaroo Care. Then she took her pacifier and merrily sucked on it while gazing all around the room. Then she fell asleep again. Today was one of the best days of my life.
December 31: Bad news first: Scarlette is having a bit of a problem with her liver and gallbladder. They just started her on some medication and will be doing xrays each day to watch it. So our big prayer right now is for her liver to function normally so that it doesn’t put toxins in her body. The other danger besides the toxins is that when any of her organs have issues, it tends to make her body want to shut off her other organs because she’s too little to handle the stress it causes. I know that everytime I ask for specific prayer for Scarlette, I have seen her improve dramatically in that area. I can not believe in coincidences So once again I am coming to you with a very specific request that her liver/gallbladder would be healed and work normally. Okay, here is today’s good news: she is on a trial run with regular oxygen! They just took her off the bubble CPAP and are trying out a regular oxygen canula. This is great because it means she’s able to do more breathing on her own and also? She can’t pull it off her face We’re hoping she’ll do well on it, if not she’ll just go back on the bubble which isn’t a huge deal at this point. Other good news is that her brain ultrasound came back normal! She’s almost past the danger of brain bleeds, which will be a relief to me because large brain bleeds can happen for no reason and are almost always fatal to tiny babies, so anytime she has a clear brain ultrasound, we are incredibly grateful. I was able to do Kangaroo Care again today and it will be even easier to do with the oxygen canula. Oh how we love this girl.
January 1: Scarlette was able to wear clothes for the first time today! She has a tiny little special micro-preemie gown (thank you Sonja Elsholz!) that is itsy bitsy baby doll sized and it’s still huge on her, lol. But it’s SO STINKIN CUTE to see her in clothes! She’s doing excellent on her hi-flow oxygen canula and we are so excited to have had her make the transition well. We’re hoping her lungs are able to stay expanded on it because she is much more comfortable without all that headgear. Her night nurse tells me that she LOVES bathtime. Instead of sponge bathing her, they put her in a basin of warm water for the first time and they said she was the cutest thing ever. I totally believe that because she’s definitely the cutest thing I’ve ever seen. She’s just started having transition smiles, where she will smile as she falls asleep and let me tell you, it just shatters my heart into a million pieces. It’s the most precious thing in the world. I was able to do Kangaroo Care and it was the first time they positioned her to face me since she didn’t have all the headgear on. That was awesome because I didn’t have to crane my neck to look at her. And she stared at me intentely for a long time and then she fell asleep making little smiles at me. She’d open one eye and raise her little eyebrow and then smile and close it again. It was so cute, as though she was all “You still there mommy? K, just checking” and seriously, just watching her little facial expressions made me all teary eyed and so thankful that I get to know her.
January 2: No change. I held her for 2.5 hours today! She is a little stinker, I got there and the nurses had put socks on her hands to keep her from pulling her oxygen canula off her face. And they had used the velcro straps to wrap around her wrists over the socks. And she STILL managed to get the oxygen canula out of her nose, and then she somehow got the socks/wraps off her hands! She is such a sweet baby, some of her nurses try to trade babies to get to have her for the day. And she’s not an easy baby, what with pulling her canula out and having to be checked on constantly, so it makes me happy that she’s so loved in the unit. Last night she weighed 2pounds 10.4 ounces! YAY SCARLETTE! It’s really striking me how LIGHT she is. It’s incredible.
January 3: Our Kangaroo Care was cut short today because she had a liver ultrasound. Her labs from yesterday were still too high so I’m hoping tomorrow’s labs and the ultrasound will show better results. I’m trusting God for a liver healing Other than that all is the same.
January 4: let’s get the not fun stuff out of the way: labs for her liver showed her bili levels still rising. The dr says that she expects them to keep rising, peak, and then start falling. The day they start falling? That will be the good day. The good news: her liver ultrasound didn’t look that bad, her breathing is a little better and she weighs 2lbs 11.1 oz! The great news? I GOT TO TRY NURSING TODAY! She can’t suck/swallow/breathe at the same time yet but dude, she is a CHAMPION. They said she’d probably just sort of nuzzle me but not take my breast yet. Um, no. They put that baby on my breast and she thought it was a pacifier. She even managed to swallow some milk! She’s on a feeding tube still but her immediate progress was AMAZING. I am so proud. And I, the girl who was really freaked out to breastfeed but determined to do it because the doctors said it was best for Scarlette, I burst into tears when she started sucking because MY BABY WANTS TO EAT! And for a micro-preemie who is tube fed, that is great. Just great. I am such a proud mama. Kangaroo Care today lasted 4+ hours. Four hours of holding my baby and letting her drink some mama’s milk. I feel real again.
January 5: An okay day. She got upset and had a few bradys and they are trying to determine if she has reflux. It’s pretty common for babies who have had the PDA surgery. I hate bradys. It’s terrible to watch your babies heartrate plummet and hear the bad alarms go off. She rarely had them and when she does those days are very tough on me. We didn’t get to try nursing today but we will again tomorrow. Scarlette is so young gestationally that her body doesn’t know to suck/swallow/breathe at the same time so she will forget to breathe while she eats. She is doing GREAT at the sucking part and she is engaged and interested in eating which is huge progress for her age. They are going to start working with us on getting her on an every 3 hours eating schedule instead of a 24 hour feeding tube. So I will pump, then nurse her and then she will finish the feeding from a feeding tube. It will take her a few weeks to learn how to do it all. Thanks for all the encouragement on breastfeeding and on my last post. I do want to note that the overwhelming majority of my experiences with her nurses/doctors have been very positive and I am very grateful that she is in such good hands
January 7: I stayed with Scarlette last night so I couldn’t update. Last night was great, I got to do my first bath time with her and it was the sweetest thing ever. Today was less good. Her labs for her liver came back and they have more than doubled. If you look at her, she is green. Even the whites of her eyes are green. I called her Kermit today. I am hoping that the sudden jump in her levels is the “peak” they’ve been telling me about and that hopefully they’ll begin the decline we’re waiting for very soon. Today was immunization day. She had to have 5 vaccinations in three shots. I have been having many discussions with the doctors about this. Before she was born I did a lot of vaccination research and came to the conclusion that I wanted to vaccinate but on a delayed schedule, spacing out the shots. I was suprised that they wanted to give Scarlette vaccinations at two months since she only weighs 2lbs 12oz. I asked about spacing them out. After many discussions with her doctors and nurses, I decided to trust them on their opinion that getting all of the shots now was in her best interest. I really feel as though the doctors listen to me and involve me in her care and that if they felt my request to delay would benefit Scarlette they would have. Her doctor also told me that she didn’t want to give Scarlette and Tylenol prior to receiving the shots because some new research has shown that Tylenol prior to immunizations in infants can cause immune system damage. Tylenol can also be hard on the liver, and Scarlette’s liver does not need any additional stress. They made sure to give her the shots while I was with her and let me do Kangaroo Care immediately after so that she would be comforted. She did great with the first shot, but after that she screamed and hit the nurses hands away for the additional shots. Then she would open one eye and peer at the nurse. When her nurse would say “Oh Scarlette, I’m so sorry” Scarlette would squeeze her eyes shut and turn her head away. It was so sad and cute, like she was telling the nurse just how mad she was at her. In some good news, she stayed at about 26% on her oxygen the last couple of days. 21% is what you and I breathe at, so 26% is EXCELLENT for her.
January 9: Thank you for your love, encouragement, support and prayers. Today showed some improvement, praise God. We still don’t know what exactly went wrong, it takes a few consecutive days of labswork to get definitive answers. But today they were able to wean her oxygen levels some and they gave her some milk! She’s only getting half a feed right now, but I am happy that it’s something because she is so hungry, she just cries and cries because she wants so badly to be fed. And I’m happy because they are slowly weaning the TPN. If things go as planned she will only have 2-3 more days of TPN which will be about 4-5 days total. It’s a big setback for her liver but at least it isn’t any longer. Her blood count is low and so she’s quit having bowel movements again. She’s frusterated because her tummy hurts and she strains to push and then that wears her out and she has a brady (heart heartrate plummets) and so once again it’s just all a vicious cycle. She is still my fiesty girl though, and that is a great sign that she’s engaged and not lethargic. There’s a little boy born the same day as Scarlette and is the same gestational age as well and he had his shots 2 days before her and did totally fine. No side effects at all. You’re not supposed to compare your baby to other babies’s progress but sometimes you can’t help it. Sometimes you feel really jealous, like today when her roommate got moved to the step down unit after only being there about a week. Babies come and go in a week and I know that week is just as hard for those parents as 9+ weeks has been for us but dang it if I am not a bit jealous of that short NICU stay. Thank you to those of you who have offered such support to me, this past 48 hours were among the roughest moments I’ve face emotionally since her birth and I have a deep gratitude for your lifting me up in the midst of it. So do you want some good news? They told us today that if this issue resolves as expected and she nurses well that, barring any unexpected issues arising, their estimated home date would be about 5-6 more weeks, as opposed to the 8-10 we’d been told to expect. She may come home on oxygen and heart monitors, which is really scary, but typical for babies like her. But even hearing the word home? We’ve not ever been allowed to do that. It was really a bit of hope in a bleary weekend.
January 11: Sorry, I didn’t have a lot of internet the last few days Scarlette experienced her first Georgia blizzard! I have great news! She is back on her hi-flow nasal canula and OFF TPN! YAY SCARLETTE! She’s on full feeds (8ml an hour) and her IV is gone. Her oxygen support is at 25% which is excellent. She is 2lbs 15 ounces! Her liver levels were all holding at the same numbers, so no rise is a good thing, we’ll know more with Friday’s labs. She may need a blood transfusion in the morning but we’re waiting to see if she can bring her crit up on her own first, it’s about time for her to start making her own blood more and more. I am so grateful. I can not even tell you how my heart feels to have her be better. And tomorrow, I will get to hold her again. It’s been 5 days since I’ve held her and my arms are longing. Thank you for your faithfulness in holding my daughter in your heart. I am so thankful for a quicker recovery than expected, and that she was not found to be septic or infected. So, so grateful.
January 13: Back to an alsmost normal (for us) day! The snow was really hindering my Scarlette time. I was able to hold her today and she is doing about the same. She’s having a few more bradys still so they are watching her closely to see if she is having reflux issues- I think I mentioned that it is a side effect of the surgery. But since she’s on a 24 hours feeding tube, we won’t really know unitl we start trying breast feeding- that got set back a bit because of her recent setback but we will start trying again on Saturday. Labs don’t come in til tomorrow morning so I won’t have any liver updates until then. I am praying for lower levels! I mentioned on twitter that Scarlette’s nurses at her home hospital are just so sweet, they send pictures of her to my cell phone at night with cute little messages from her. It eases my night time sadness.
January 14: Let’s talk about Scarlette’s blood: Oh, okay! It’s AWESOME! Guess who is a big girl and started renewing her own blood this week? Her hermatocrit (spelling? I have no idea how to spell that.) was very low for a few days- normally they’d transfuse her but they wanted to give her some time to see if she’s ready to make her own blood supply yet…and today she went UP on all of her blood levels! I am so happy about this. In other labwork news, her liver levels all came back 1.5 points higher. I expected that, with her being on TPN last week, so it’s just a waiting game as my little Kermit gets greener and greener. She’s still hanging at 2lbs 15 ounces. She’s SO CLOSE to being my 3lb baby! I just can’t imagine.
January 18: Did I miss four days in a row? I totally did. Okay so…I have mostly all good news! Scarlette is THREE POUNDS! And her liver levels dipped a little, so the dr. thinks we may be on the way to getting better there too! AND they are working on weaning her on the oxygen, she is on 3 liters right now and has been holding at about 23-25% (21% is room air so that is great). Today they tried going to 2.5 liters and she’s still at 23% and doing great! She is having some reflux issues so they are going to try a medication for that and have to get it under control before we can try the three hour feeds, but we are going to get to do empty breastfeeding (that’s where I pump and then put her to the breast and she gets the tintiest amount of milk ever, just to get her used to sucking). Sorry for the delay, Jeff was sick over the weekend and we’ve been to the dr and such. He’s getting a little better but we have to stay away from the NICU, even me although I am not ill and have no symptoms, because I have been exposed. And we’d never expose the tiny babies to illness, so the drs advised us to wait a certain time period before visiting her again. This is one of the worst parts, I was praying we’d stay well so this wouldn’t happen. But it did and not being able to see her every day is incredibly painful. It’s painful enough for me to leave every night and come home to a house without her in it, not even getting to see her is terrible. I’m thankful for nurses and parents who text me photos of her so that I can kind of make it through my day.
January 19: I just realized that I dated all of today’s bottles as 1/18. I need more sleep. Guess what? I only have good news to share today! First, Scarlette weighed 3lbs 1.2oz tonight. I can not believe I am even typing the words three pounds. What a big girl! I know I’ve gotten bad about updating her pictures here b/c typepad takes forever to upload them. I keep meaning to put them all on flickr but I have had no time, I’m sorry. Here is a super cute one my mom took last night. (By the way, how did we end up with a blonde baby? And also, you can tell how green she is in this picture. And she looks LESS green to me! And also, who has the cutest baby in the world? I do!) She’s currently on 2.5 liters of oxygen and she is on ROOM AIR Y’ALL! 21%! They tried to make her go to 2 liters, but she said “no, no, no” (sing it, it’s fun). Very few alarms today AND tomorrow I am officially done being quarantined and able to go be with her again. I’ve been passing the time at home working frantically to clear out all of my scrapbooking stuff from her room so that we can make it into a nursery. Last week was the first week that I opened the door to that room since she was born, I just couldn’t bear to see it until I knew we would get to bring her home. And now I’m like “Dang, I should have done this sooner, I have a stinkin ton of scrapbooking stuff to move to the basement!” Plus we have to BPD-proof the house for her lungs- steam clean carpets (praise the Lord we got all new carpets and hardwoods when we bought the house) and fancy air filters and deep clean vents and moldings and so many, many things to help her breathe well here. I’m exhausted just thinking about it. But I’d cover the house in bubble wrap if they wanted us too
January 20: All good news again! 3lbs 1.8oz and 21% on TWO liters of oxygen! And feeds were upped from 8.5 to 8.75. Grow baby! I was able to see her today and I held her for four hours. I can’t wait to put up pictures for y’all but Jeff is going to rub my aching back now so I’ll be back tomorrow. All my love!
January 21: 3lbs 2.4oz! Back to 2.5 liters of oxygen but on 9ml of milk per hour. They forgot to put in an order for labs so I won’t get those until the morning. I tried to be gracious about that but I was having a rough day so I was not happy that her labwork was late. She was okay but having a little more spells than normal and I think it may be because her crit is low. I’ve been anxious to see today’s numbers since Tuesday to see if they were going to transfuse or not. I am pretty used to transfusions now, and she gets blood our family and friends donated directly to her, which is cool, but every transfusion is an infection risk so I hate having to wait on the news. Mostly b/c our whole life with her is a waiting game so I like my constants: lab work Tuesdays and Fridays, bathtime every other day, temp checks every four hours. I am having a rough time emotionally this week. I think it is just because my cycle started back so those hormones + pumping hormones make me all out of whack. And this week two of my best friends delivered their babies. I did much better than I thought I would do, for a long time after I gave birth I did not want to see or talk to them since they were due in January and I had my baby so much earlier than them. I was really traumatized post c-section by how everything happened and it was painful to see them be so close to where I would have been in my last stage of pregnancy, to know their babies in their bodies weighed more than Scarlette. But I wanted so badly to love and support my best friends this week and I can’t let those feelings linger over me forever and prevent me from living. Seeing them in the hospital? That wasn’t hard because I’m used to the hospital. It was watching them get ready to go home that hurt my heart because that’s how it happens for most people. They go to the hospital, have their baby, and then they go home with their baby. And after I visited them, I walked over to the NICU and lifted the lid of Scarlette’s isolette and was consumed with jealousy. Do you know what Jeff said to me tonight? He said “But we’ve been able to have two and a half extra months of getting to know our baby. They should be jealous of us.” He’s the only person who can reach me sometimes.
January 22: 3lbs 2.7oz! Everything was the same today, no change in the labs. Tonight I had one of the scariest experiences yet. They were changing out Scarlette’s NG tube and somehow something went wrong and the tube went to her lungs instead of her stomach. It sent Scarlette into a bit of a shock and all of the sudden she just quit. Quit breathing and dropped her heart rate lower than I’ve ever seen it go. They had to call for help for her, which is something I’ve never seen happen before, I’ve never seen the panic button pushed for my baby. It took a long time to find her pulse and she just kept getting grayer and grayer as they tried to bring her back up. It felt like it took forever. The whole ordeal took so long that her temperature dropped and she started bradying over and over because of being so cold. They suggested I put her skin to skin to warm her up and I stripped off my clothes faster than you’d even think was possible. I didn’t think to pull the curtain or anything, I just got topless and clutched her to me and it didn’t occur to me until later that I didn’t exhibit one shred of modesty in front of her male doctor. All I could think of was getting her warm to get her heartrate stable. They checked her over to make sure the tube didn’t puncture her lung and they don’t believe it did but she’ll have an x-ray in the morning just in case. Also, before that happened I changed her diaper and it was a really weird bowel movement, all gray and foamyish. The NP and Dr. looked at it and tested it and said that it is very common for that to happen in babies w/her liver problem and that it will probably continue for a few weeks. I felt unsure about this b/c she’s had the liver problem for awhile but never had a diaper look like that before, but they assured me that it was okay. Nevertheless, I feel anxious about it and will probably get another opinion tomorrow as well just to be safe. I would appreciate y’all praying for her lungs to be clear and not punctured as well as for her not to have anything wrong to be causing the change in her bowel movements, I much prefer it to be a side effect of her liver issue than a sign of illness. The whole time it was happening, one of the nurses was standing with me saying how sorry she was, that she knew it was terrible for me to be witnessing this. And I thought “Why is she apologizing to me? Everything is fine, she’s fine.” And then about two hours later, when Scarlette hadn’t had a spell for a long time and was just sleeping, I all of the sudden sat down and started sobbing uncontrollably. I’ve learned that I tend to be really calm and focused when bad things happen and then once it’s over I completely fall apart. It makes me feel like a crazy person. As I type this it’s her midnight evaluation so I’ll call up there in about 45 minutes when they finish to check on her again. Oh some good news is that she did get put in a new bed today, the transition bed before she gets to go to an open crib. I’m pretty happy about that. I hope this all made sense, I’m so tired y’all.Today marked our 76th in the NICU and I just want her healthy.
January 23: No changes today, a very good day considering how rough last night was. Very few alarms and mostly she just slept I don’t have a weight tonight b/c they hadn’t weighed her yet when I called in for night assessment (I don’t think I have to mention my annoyance at that right? Constants people, I need my constants. At 10pm I call for assessment update and get her weight on the nights I’m not there for weigh in. I know it’s nothing to get worked up about, but dang it if I don’t feel totally unsettled when my constants with her are changed at all!) Thank you for your kind words, yesterday was definitely one of my top five worst moments during this whole experience and I appreciate your love and prayers so very much.
January 24: Same weight as last night (which, as it turns out, was 3lbs 3.6 oz) but she went to room air all day on 2 liters of O2! Mommy is so happy. Also? It was a brady free day! Say what?!! Overall it was a really great day. I had a long talk with her dr today b/c baby is HUNGRY. Whenever I hold her and she’s awake, she roots around like crazy and is only calm if I give her a pacifier. They can’t just let her breastfeed b/c they have to introduce milk slowly to avoid NEC. Anyhow, her dr today wrote orders for us to try bolus feeds tomorrow. If she doesn’t take to it well then we can back off but all her nurses keep saying she’s overdue to at least try. They’ll weigh her, let me try to nurse and then weigh her again. Then she’ll get feeds every 3 hours. So the big prayer is for her tummy to handle feeds. Right now she gets 9ml every hour continously, 24 hours a day. On bolus feeds she’ll get 27ml all at once every three hours. That is a lot of milk for her tummy to take at one time and so it does put her at risk for intestinal issues like NEC. But at some point she has to learn to eat, she can’t be on a feeding tube forever and they were originally supposed to start bolus feeds 2 weeks ago at 34 weeks. This is one of those NICU things that is frustrating. I don’t get to just feed my baby and even giving her GOOD things like my milk are risky. It’s frustrating to see her be hungry and not just be able to feed her. But today was a great day for her overall
January 25: At some point tomorrow I will try to write everything out but tonight I am exhausted and my emotions are raw. After a great day today, suddenly at about six pm Scarlette crashed hard, quit breathing and could not get her heartrate stable. They wouldn’t let me be with her while a team of nurses and doctors worked on her. She is finally stable and sleeping, but she is currently off feeds and on IV fluids. So far her x-rays have been okay and we will know more after the next set of x-rays and labwork comes back in the morning. Dr. M thinks there is a very good chance it was an isolated incident caused by a reaction from a medication but we won’t be totally sure til morning. Please pray for our girl tonight, that it was just a temporary setback and not an infection or worse. Thank you deeply.
January 26: Stable and doing well. She had a full day of tests and x-rays and they feel sure that her episode was caused by a mixture of medicines making her have a bad reaction that caused her tiny system to just shut down. They took her IV out and let her eat today. I got to breastfeed and she did amazing. I am exhausted but very happy that she is better and that she does not have an infection or NEC!! I’m also happy that I was able to walk out of the NICU today with no tears. My amazing little girl, she is such a fighter. I have much to tell y’all but vrey little time, I’m so sorry! I promise pictures and a thorough update very soon. Thank you so much for praying for her, sometimes I can’t even find words and I’m so thankful y’all are holding her in your hearts. Today was a good day, my baby was well.
January 28: 3lbs 3.9oz. Big girl She’s bounced back pretty well! Her hermatocrit dipped pretty low after her episode the other night so she was transfused today and now she is rosy pink. I expect that to be her last transfusion. But her liver levels? They dropped by HALF! Yay! The whites of her eyes are nearly as green anymore. We no longer call her Kermit. Want some big news? Guess who breathed on her own with ZERO oxygen or flow for 10 hours? That’s right! She’s such an amazing little thing. They took off her canula to nurse and she just kept her sats at 100% the whole time, so they just left it off to see how she did. She did great but they don’t want to push her too hard so she’s back on, but flow only. No oxygen, just flow at 1.5 liters. They’ll wean by a half a liter every two days so they expect her to be off all oxygen next week. It will be great if she can come home with no oxygen. We’ve been nursing this week and she is a champ at it. Mommy is trying to figure the whole breastfeeding thing out still, but once she latches on she can totally suck, swallow, breathe. She has not desatted or apnead one time while nursing! So proud. Also, she totally burps like a grown man. She’s also started taking a bottle for the late night feeds when I am home so hopefully she’ll lose the feeding tube next week as well. The only thing they are watching right now is that she is having trouble pooping again- she’s eating a lot more food at once so it’s kind of hard for her to push it all out. So she needs some work there. I love our nurses at our home hospital, I feel so grateful to have her in such great care.
January 30: Last night I got the call that Scarlette was being taken off 3hr feeds and being put back on continuous feeds, which is the 24 hr feeding tube. Her tummy can’t handle the 3hr feeds yet. Her belly is very distended and her x-rays show it having lots of air. They’ve watched her nurse and she doesn’t seem to be taking in the air when she feeds. It’s partially due to being on hi-flow, the nasal canula just naturally allows some air to escape into her stomach. And the rest is because she gets so hungry before a feeding that she screams, gulping in huge gasps of air. They take the air out through the tube and that helps a lot. I’ll only be allowed to nurse once a day for half of a feeding. They called for a surgical consult to see if she needs surgery on her abdomen but we won’t see the specialist until later this week. Her doctor is hopeful that it is just slow motility and that she will outgrow it. Unfortunately, this means our plan of bringing her home has been set back. I would much rather have to wait longer to bring her home than for her to have to have surgery, so please pray for her tummy. She is digesting everything fine, just too slowly. I am heavy hearted because she is twelve weeks old today (37 gestational weeks) and I still can’t even feed my baby and she is hungry. I still can’t pick her up to hold her without help from a nurse. In fact, I can’t even do skin to skin anymore because now that she is used to nursing she just screams and flails trying to nurse when she is put skin to skin, and so I am only allowed to swaddle her to hold her. I am very afraid for her and praying that this is something she just needs more time on and that she’ll grow out of.
January 31: Sadly, it’s a down day and I don’t have great news. Her tummy was worse this morning. They did a full workup on her and can’t see anything other than a LOT of air in her bowels. They turned off her food completely today and she is just on clear IV fluids. They put in a replogle tube (which I like to call her “Darcy Tube” b/c my sweet Darcy’s maiden name is Replogle, lol!). The replogle constantly suctions air out of her tummy. Her tummy is much smaller since it’s been in, but it’s not a long term fix and no one really has one right now. There’s been talk of sending us back to the children’s hospital but nothing is certain yet. They took her off all oxygen and flow today b/c air tends to escape into the belly with that so she is currently breathing on her own, my big girl. Her eye exam was postponed because she was very ill today. She bradyed over and over unless I was holding her and rubbing her back so that has been our day, me rocking her and trying to pat the air out. We’ve looked at my diet and have ruled out that. Also, preemie babies don’t get diagnosed as colicky. Oh if you could see her tummy, it is so distended and hard and painful looking. I hate that we have no answers and that she is uncomfortable and hungry. She’s also not having very good bowel movements, so they’ve started suppositories again hoping that will help. Today was the first time she’s ever spit up and she vomited so very much that it just exhausted her. She’s such a sick girl right now. Our hearts are heavy with hurt for her and the unknown. Personally, I am not dealing well with the news. The little guy that was born the same day as her and that is the same gestational age was moved to the step down unit this week. I ran into his mom on the way out and just felt so sad. We’re not even close and we so thought we had homecoming in our future. I just want her better. I just want her not to have to look at me through tear filled eyes and cries that I can’t comfort. I hate that she is hurting more than anything in the world.
February 1: I’m posting today’s update here because I psoted a picture and don’t want to type twice xoxo
February 2: Okay, I don’t really have much news. The x-rays today weren’t as clear as they would have liked. It is showing pneumatosis, which is indicative of NEC. However, they aren’t positive that what they are seeing is actually NEC or just pneumatosis or colitis. They told me today that she isn’t acting like a NEC baby. Her tummy was distended but her bloodwork came back with no sign of infection. She’s alert and incredibly hungry and they tell me that is confusing because most NEC babies are listless and have no appetite. My baby tried to eat through my shirt today. Like, I’m pretty sure if she had teeth, I’d need stitches because she’s all “YOU WITH THE MILK, FEED ME NOW!” And get this: she’s breathing on HER OWN. Like, without any oxygen canula at all. They took her off the flow to try and stop any air from escaping into her stomach and I guess she decided that she just didn’t need it at all and was all “Hey everyone, I think I’ll just start breathing by myself now, kay?” She’s satting 95-100% by herself. My crazy little miraculous baby. So basically, she’s a mystery. All sorts of people (medical people, not just random people) keep coming to observe her and try to figure out what is going on. Is it NEC, is it not NEC? That is the million dollar question. For now, they are administering treatment as if it is NEC, for which I am appreciative. They are going to do five days without feeds and then re-evaluate, with x-rays each morning. She is so incredibly hungry that they are having to sedate her because she works herself up into such a fit that she raises her heartrate and her blood pressure. The only time she didn’t scream today was when she was either: a) getting sugar water dripped on her tongue or b) I was singing My Girl to her. She’s a big fan of My Girl. I wish I was coming here with better news, like that she definitely doesn’t have NEC. I wish I had a clear picture of what we’re dealing with, and I know her doctors are doing their very, very best for her. I can’t thank you enough for your faithfulness to our family, in loving and praying for Scarlette. It carried me through today, truly. I am not doing well, I am weary and sad and so many other things. I knew I would love being a mother. I knew I deeply desired to have a baby, to raise a child, to expand our family. But I had no idea that I would love her this much. That I could never put into words this love, this incredible, breath taking love. I gaze at her and I am enamored and the fact that she’s constantly being hurt by something makes me break inside in a way that nothing could even describe. But I am rejoicing in this: She is alive. She has made it this far. She is breathing. And she is so very loved. I hope to be able to tell you after tomorrow’s x-rays and labs that she is better. I hope against all hope to be able to sit here and type those words.
All our love and gratitude.
February 3: A lunchtime update (thank you ChicFilA for free Wi-Fi!) So…yeah, we still don’t have many answers. Today’s xray show a lot more air in her bowels, which makes no sense because she is not on oxygen and hasn’t eaten in days. She is showing slow-moving stool so the air can be indicative of just incredibly slow motility. Or it could be all the things mentioned yesterday. Or it could be rotavirus. They can’t test for rotavirus because she hasn’t pooped for them to be able to do the test. Shes trying to poop because she strains and strains and nothing happens. They might give her prune juice. I was all “How can you give her prune juice when techinally she is supposed to still be INSIDE OF ME?” but apparently they can. They’re waiting to try that though, it’s just suppositories and a vent tube in her tummy for now. Another possibility is that she had a bad reaction to the fortifier in her breast milk. They put a high calorie fortifier in her bottles and tube feedings to help her gain weight. They had weaned her off one and onto another right when all of this started. They just told me that the reason for that was because insurance only pays for so many days of the first fortifier because it costs two hundred dollars a day. Because that is a reasonable price for a long-term medication designed specifically for fragile infants, right? So they went to the hospital’s pharmacy board and wrangled Scarlette into a study of babies on the first fortifier so that she could continue to get it at no cost. Thank you Lord, for provision and a medical team who works in her best interest (have I mentioned how happy I am to be back at her home hospital?) Their hope is that it will help her when she can go back on feedings. Her doctor today seemed more positive about it not being NEC. They won’t tell me it’s not unless they are absolutely sure it’s not and I understand that. I think their feeling is that it’s a small possibility of it being that now but air in her bowels puts her at high risk for it developing and it seems that the air issue is just getting worse. This is all as clear as mud, right? I know, it’s exhausting and confusing for us too. Scarlette is still sedated and just sleeping while I rock her. You can hear her stomach growl from ACROSS THE ROOM, she’s so hungry. Her nurse teared up this morning listening to it and said she just wanted to feed her so badly she could hardly stand it. So tomorrow is more of the same- x-rays and labwork to hopefully get us closer to a diagnosis. So if you could please pray for poop, and also if you think of it that her liver will be able to sustain the damage from the TPN. She is really green today In clinging to positive: she’s breathing, she’s hungry, she’s my beautiful, brave girl and she’s still with us.
In hope and love.
February 5: Xray was better, still air but less distension. Decided to try on half feeds, 24 hr continuous, along with Reglan to help her digest better. So far she is handling feeds well, we’ll have a better idea with tomorrow’s xray of how she’s doing with them. It’s a slow process, they’ve done all sorts of tests on her and it’s a lot of trial and error to figure out what is wrong at this point. I am happy she is eating because she is so much happier but nervous too b/c since there is still so much air there, her potential for NEC is still considered high risk. But they have to be able to feed her so…it’s frustrating to say the least. Her potassium is on the low side and as expected, her liver levels are all high again. She’s resting well and still breahting great on her own. They have slowed the sedation so that she isn’t totally knocked out anymore. Tonight she weighs 3lbs 7.2oz and she’ll be 13 weeks old (38 gestational weeks) tomorrow We spent the day in the rocking chair, thank you KIWANIS for donating comfy reclining rocking chairs to the NICU, I am so grateful for those!!
February 6: A good day followed by a crappy night. She’s just not having bowel movements, her tummy is full of air and distended again. Her reflux is pretty severe so it’s causing her to have apnea episodes, which means she might have to go back on the oxygen. That’s a bummer b/c it just outs more air in her tummy. She didn’t have any apnea episodes while breathing on her own the whole time she wasn’t eating so she’s breathing well and doesn’t need the oxygen except that the reflux is just to much for her. We just need some answers as to what is causing this. She has to be able to eat and digest and no one knows why it isn’t working for her. Poor baby. She’s thirteen weeks old today (thirty eight gestational weeks) and still so sick. And it changes so fast, she was having a good day and then all of the sudden tonight she is not well again. I am sad and discouraged, I just want her to be able to digest her food. I’ll hopefully know more after I talk to the dr. in the morning.
February 7: Happy 3 month birthday Scarlette! 3lbs 9.8oz. She’s back on lowflow oxygen to help with her reflux apnea spells. Everything else is about the same as yesterday :/ Still no solid answers, I spent the day asking many, many questions. I have a few things I’d like the drs to try that they are not in agreement with me on. I am going to talk to the other neonatologist tomorrow and get another opinion. I’d like to try no fortifer at all, even though she’ll be losing the extra calories. Jeff and I think that they are wasted on her if it’s causing her to be so constipated that she has to strain so hard and expend more energy to breathe. Please pray for guidance as we consider asking the drs to go against their normal plan for preemies to seek a solution for her. We figure a trial run to see if it helps can’t hurt her and then at least we’d know if it was a factor or not, right? Thank you for all of your suggestions, I’m so appreciative of your prayers and input. Also, I can not stay awake. Having a micro-preemie is like having a newborn for 3+ months. No rest for the weary, that’s for sure!
February 10: Please pray for Scarlette’s system to release the trapped air. I have much to update but right now we fervently need the distention to ease. She has been on stomach suction for 48 hours and her tummy is measuring larger than when they started that. They can not help her until the distention goes down. Thank you.
February 12: I know you’re all like “What’s the story, morning glory?” Thanks for your patience- the last few days have exhausted me. A few days ago we had a repeat of the week before last. Super distended tummy, bad xrays, the whole is-it-NEC-is-it-not-NEC question again. So once again she was pulled off feeds and put back on TPN and started on a 48 hour tummy suction. Only this time she had over eight veins blow as they tried to put her IV in b/c she’s just been stuck so many times, so it was pretty traumatic for her, plus she’s so distended she wasn’t able to breathe well. They kept her sedated b/c she get so hungry she pulls all of her IVs and wires and tubes out. At this point I was BEYOND frustrated because I felt like they hadn’t been pro-active enough with her care. I EXPECTED this to happen again because they never found a solution the last time and then they didn’t make any changes once they restarted feedings. I had discussed taking her off the fortifier with them to no avail. Finally when this happened I made them write orders that she was NOT to have fortifer when feeds were re-started for at least a trial period. It’s okay with me if it doesn’t work out, but I wanted to at least be able to eliminate it as a cause.
Then I got a lot of emails from y’all (THANK YOU!) about the Duggar baby (born very early and similar to Scarlette’s weight with very similar digestive issues) who is lactose intolerant and needed a special formula. My niece is lactose intolerant but I never made that connection because she wasn’t breastfed and I did not realize that you can be lactose intolerant with breastmilk. I had already cut all dairy out of my diet to see if that was an issue she was having and since it didn’t help, I didn’t think that was an issue. Then I learned that breastmilk has lactose in it and so it doesn’t matter what you cut out if your baby can’t handle breastmilk. I discussed it with some of her drs but they told me that it would be rare if that was the issue. To me “rare” still means “a possibility” (because everything about my baby has been rare!) and so I wanted to try her on the special formula the Duggar baby was on. They didn’t want to do that because if they give her formula, she can never be on the human milk fortifier. Okay fine, I didn’t want her on that anyhow. It’s very difficult because I don’t know the first thing about medicine. It’s hard to insist on something like that because I’m not a doctor, and also saying “I saw this formula on reality tv” probably doesn’t sit well with people who have been in medical school for a billion years FINALLY my favorite dr came in and called in a neonatal GI specialist to see Scarlette. The specialist felt as though Scarlette’s GI tract is still the most underdeveloped part of her. He’s unsure as to whether or not she is lactose intolerant or just not able to digest proteins yet (it can be pretty hard for preemies to do that) but he felt as though she needed to be on a hypoallergenic, elemental formula. It’s basically broken down to where it’s kind of pre-digested so that her body doesn’t have to work so hard. Since her liver is suffering right now, it’s even harder for her body to break down some of the stuff in breastmilk.
I am happy with this decision because I feel like even if it doesn’t work, we’ll have eliminated it and be one step closer to what IS wrong. Unfortunately, her stomach kept distending even on the suction, which was very bad. I really have no explanation as to why it suddenly went down so much, except that I asked y’all to pray for her and it happened
Today she was started on 2CCs an hour of the formula. It will take about a week to know if it works or not. I am praying so hard that this is our answer so that she can eat and grow and be healthy.
I do have a gentle request: I posted the other day about using the formula and I was surprised at the number of vehement emails I received telling me that breast is best and that I should not let her have the formula at all, etc. I’m kindly asking that you please don’t do that to me. It’s hard enough going through this as it is and struggling with my body’s failure to protect her, her not being able to tolerate my breastmilk feels like a blow. I have done my very best at this breastfeeding thing, pumping 6-9 times a day for 3+ months, and I am continuing to pump in the hopes that she will outgrow this and be able to nurse eventually. If not, I’ll donate all 3 freezers full of milk. I am passionately pro breastfeeding, but as I’ve learned in this whole process, it seems I can’t do ANYTHING I planned because she is just that different, her body isn’t fully formed and she’s not a normal baby. If this is our answer to her pain, my sadness at not being able to breastfeed will be miniscule compared to my absolute joy at finding something that helps my baby get well. Honestly, at this point if they came to me and said “It turns out Scarlette is a cannibal and needs human flesh to survive” I’d be like “Awesome, let’s feed it to her.” Jeff said I was weird for thinking that It is the worst thing in the world to see her in the pain she has been in and it is possible for some babies who are severely underdeveloped to not be able to tolerate breastmilk for a time. This makes since to me because she’s only ever been on breastmilk and she has ALWAYS had distention/digestive issues. We prayed extensively over the decision to take her off fortifier and the formula follows that same line of thinking. So thank you for understanding, I treasure your comments and suggestions and I know that you have helped us tremendously, I even know some of those no-formula emails were well intentioned it’s just that my weary spirit will break under accusation.
Wow, if I don’t update for a few days I have to write a novel, huh?
All my love
Night Update: Today’s liver ultrasound was clear! Her levels are still high but whatever valve they were looking for is normal and intact and they feel like she’ll outgrow the liver damage, praise the Lord! She LOVED her bouncy seat today- there are photos HERE and HERE!
February 14: Happy Valentine’s Day! First, thank you for your support about the formula, I sincerely hope you were all able to discern my heart regarding that request and I appreciate you all greatly. So big news: FOUR POUNDS! (let’s take a moment to celebrate that, shall we?) She’s able to sit in her bouncy chair now and she LOVES it (she says “thanks Aunt Laura Anne, for my awesome bouncy chair!”) Now for everything else: she’s tolerating the new feeds well but it will be a few days before we know if it is working b/c she is not at full volume yet. They stopped her reflux medicine and she is having very bad reflux causing her to brady so they are looking at restarting that. The crappy news is that her liver levels are pretty high again (i have a love/hate relationship with TPN) and she is starting to show some side effects of that. So today they are doing a liver ultrasound on her and I am feeling very anxious about that, please pray for good results from the scan today. Thank you so much. (p.s. sorry I havent uploaded pics here- it takes FOREVER so I’ve just been doing them on facebook. here is a little collage of her recent pictures!)
February 15: The elemental formula isn’t working, her stomach is incredibly distended and they don’t know what else to try. It looks like a trip back to the children’s hospital is imminent, where I pray that someone will be able to help relieve my daughter of her pain. In positive news: her eye exam showed improvement and she weighed 4lbs 2.4oz. This week is my due date and I am incredibly emotionally fragile. News that 6ml of elemental formula is causing her to be sick is breaking my heart.
February 16: Tomorrow Scarlette will have another GI study done. Our hope is there is a partial obstruction of her bowel (aka hardened poop!) that the contrast dye will push out and then all will be well. Other ideas they have is that there is an obstruction or stricture that may need surgery. They also want to do another biopsy for Hirshsprungs (sp?) b/c she was so tiny when they did the last one, they can’t be 100% positive that they biopsied the correct spot in her intestines (totally not something you want to hear after they already did that invasive procedure on your daughter when she weighed less than two pounds!) If that comes back positive this time, she will have an ostomy bag until she is much older. We’re praying there is just a removable obstruction, but we can deal with changing ostomy bags as long as it means our baby girl can eat Exploratory surgery is an option, although one we really hope doesn’t have to come into play. The plan is to have the GI study in the morning and we are packed and ready to be sent back to the children’s hospital tomorrow afternoon if need be (we’re taking bets on whether or not insurance will think this ambulance ride is “medically necessary” lol.) The children’s hospital specializes in intestinal issues in babies so hopefully someone there will be able to give us some answers. It’s just tough on us, I’ll be living at the hospital again while Jeff is working/living here at home so we could definitely use some prayers for strength and peace It’s tough to have to be apart when she’s there because she’s there because she’s sicker :/ But mostly we’re praying for an answer and for a solution that will let her eat and digest again, to ease her pain. All our love,
February 17: Today’s lower GI study looked normal. Actually, they were able to rule out Hirshsprungs again based on this test. It did show some dilation of the small intestine. Every study she’s ever had showed that so I am not sure that it really means anything in relation to what is going on with her, her surgeons never felt that it was significant in the past, however, there is a possibility that it has worsened over time. So tomorrow morning they will do an upper GI study on her. There is a small chance that if there is a blockage in the upper GI, this test could fix that and then she would return to normal. If not, we will go straight to the children’s hospital, where she will see other specialists. I do not know what tests they will perform there. She was supposed to have a PICC line placed today but almost all of her veins are blown and so she had a midline put in her groin instead. They will most likely put in a surgical central line at the children’s hospital this weekend. It was a pretty tough day for her overall but she’s a little trooper. Thanks to those of you who sent the information on Omegaven, I had been researching that as well and am working with her doctors to see if that is an option for her.
February 18: So. The upper GI study today? Looked totally normal. They gave her 2oz of the solution and it passed through fine. Quickly in fact, so quickly that it shouldn’t have gone through that quickly if her problem was just slow motility. Both tests helped her pass some small poop blockages but nothing that should have been blocking digestion. So new plan: they are hoping that the tests stimulated the bowels to work normally (sometimes that can happen.) We will try breastfeeding her in the morning, going to bolus feeds instead of continuous feeds. We’ll see if she’s able to digest feedings every three hours. We’ll hope and pray that she can If not, we’ll head over to the children’s hospital.
(P.S. some of you have asked about her hospitals and Jeff and I have made the decision to keep that information private while she is still there. We had a security instance we found questionable and I’m sure it was a rare mistake since they are VERY careful about security but since we’ve shared so much information about her, we want to be extra cautious about keeping her safe and secure! Thanks so much for understanding!)
February 19: They tried three hour bolus feeds of 10ml today. Instead of getting distended, she was having high residuals with a lot of gastric acid. That’s never happened before, she rarely has any residuals at all. They pulled her back off feeds tonight and we will meet with the team to re-evaluate in the morning. Frustrated.
February 22: No change the last few days so today was the first day of The New Plan. So here is the new plan: they put an NJ tube into her small intestine. They will give her the elemental formula (it is pre-digested since it will not be passing through her stomach) on continuous feeds through that. At the same time, they will be suctioning her stomach with the replogle. The hope is that they can keep the excess air from mixing with the food and that her body will be able to absorb the nutrients, enabling her to grow and cut back on the TPN. We will gradually increase the feed for one week and then cut off the suction to see how she does. They are hoping that this is something she will just grow out of, since they didn’t see any surgical issues on her GI studies. She needs to not get distended and have some poops! There really is no solution for us right now, it’s just trying one thing after another and it is really frustrating. I hope this works.
In good news, her eye exam was much better today and showed that her blood vessels have passed into Zone Three, which means her risk is much lower now! She’ll only need exams every 2-3 weeks from now on. Her hermatocrit was up and her liver levels have stayed in an okay range, which is a miracle given how much TPN she has been on for this long.
February 24: Good news first: 4lbs 6.9oz! She is growing well so hopefully this means her stomach will mature and develop as she grows. No changes really. She’s still on the NJ tube and continuous suction. She is getting 2ml per hour continuous of her elemental formula and they will increase that every other day if she does well on it. She has to get to 10ml before they will see if she can digest without the feeding tube. So we have a few weeks of just waiting. I am fervently hoping that this is the solution, that she can come off the tube/suction and EAT. We’re looking at a pretty lengthy NICU stay now, regardless. I am feeling a bit down and trying hard to believe that this treatment will work. It is disheartening to think of going almost another month and then finding out we have to start all over. They are letting her faux breastfeed, so I pump and then she is allowed to practice suck-swallow-breathing even though she isn’t getting any milk out. They said it would be good for her and it really soothed her. She “nursed” today and then slept on me for about 4.5 hours straight! She has had one bowel movement each day, which is good for the amount of food she is getting. Some of you asked about what weight she has to be to go home- she just has to be over four lbs, but she has to be able to eat. They have a 7lb baby there now that can’t go home just b/c he won’t eat. Scarlette is ready otherwise- she can nurse, she is breathing on her own and holding her temperature. The big deal is just that she can’t properly digest her food! So frustrating, but thankful that she has escaped some of the major issues of micro-preemies thus far. If you’re praying for Scarlette tonight, please keep our unit in your prayers. Last night the family that we are sharing a room with lost one of their twin babies. And tonight as I was leaving, one of the other babies coded. I am grateful beyond words that Scarlette is still with us, oh so grateful, but I am broken under the heart wrenching sadness I feel for our fellow NICU families.
February 25: 4lbs 9.7oz! Um, oh my goodness. In terms of her growth, the NJ tube is definitely working. Whether or not it will help once the replogle is removed remains to be seen but I am glad she is getting bigger and stronger. Tomorrow we’ll try 3cc’s per hour. She is not having very good bowel movements though, she needs to have those improve to be able to be allowed to eat more.
February 28: 4lbs 12.2oz! She’s on 5ccs per hour, still on the replogle and only having bowel movements with suppositories. Silly girl, I know she can go on her own because she’s totally pooped on me in the past. We had the best time together today. She’s so sweet and cuddly and just loves to be talked to. She loves music, she turns in the direction of the CD player when we turn it on and makes this cute little face that is our favorite. It stormed today and she was asleep in my arms and she was so scared by the thunder! I felt so bad for her, there was really no way to explain to her that she was okay and I hated that it scared her every time it happened. She switches to a new dr. tomorrow- the neonatalogists rotate charge each month and this dr. is my favorite. I am happy to have her back leading Scarlette’s care and interested to hear her thoughts on where we are and what our goals will be for the month. I am longing for her to be healed. In a bit of personal prayer requests, I’m waiting to hear back from Scarlette’s case manager b/c apparently something happened with our insurance and we got about a gazillion bills in the mail on Friday-one for every day she has been in the NICU in February! Pretty sure someone made an error somewhere in the coding and I have an appointment tomorrow to figure out what happened and what to do from there. But if you could say a little prayer that there was some sort of clerical error and that we do not actually owe the hospital hundreds of thousands of dollars, we’d totally appreciate that I feel a little overwhelmed having to deal with that on top of everything else and I truly would like to get it resolved now instead of having to file appeals for every single day she is in the hospital from here on out :/
March 3: Early evening update (I’ll update again later tonight after I have her weight, etc): The last two days Scarlette wasn’t really herself- fussy and not wanting to do tummy time, bradying- she never bradies anymore, she’s totally outgrown that. This morning she had about 3cc’s of fresh blood in her stomach, removed by the suction tube. Occassionally the suction tube will hit her stomach wall and a little blood will come back but less than half a cc. So began a day of me sort of freaking out, waiting on x-rays and blood cultures to make sure she didn’t have internal bleeding or an ulcer. They gave her some medicine to heal her stomach and took her off the suction for 24 hours. So we won’t be sure until tomorrow but as of tonight they are telling me that they feel sure it was just that the suction hit a part of her stomach lining and tore or something. My poor girl. That sounds terrible doesn’t it? It is so weird to have to rejoice over that, that the alternatives were worse and that I’m grateful that it was just a suction tube tearing her on the inside and not something worse. Her little life is so complex So this brought on a new situation, which was: she is on 10ccs pf Elecare per hour, so how was she going to do without the continuous suction? We won’t really know that until the morning, but so far she’s gone all day without any distension. The NJ tube is still in and she is getting her feeds through that. She was a HAPPY baby once that replogle tube was out! We snuggled all day long. Please pray that her stomach does not get distended this time. It’s our only hope for her to be able to eat at this point.
March 5: Morning update: FOUR POUNDS FIFTEEN OUNCES!! After 24 hours w/no suction here is what is going on: they didn’t get any more blood in her tummy and her labs came back for no internal bleeding. Praise God. She is OFF the TPN and so she pulled her IV out herself the minute they turned the fluids off. She is crazy. Seriously, anytime they decided to d/c something she goes ahead and just pulls out whatever IV/tube/etc. is hooked to her. It’s like she knows they are saying it’s done and she wants the tube gone as soon as possible. Silly girl. So she is on full feeds now- 14ccs per hour, continuous over a 24 hour period. These are still going through a feeding tube directly into her small intestine, bypassing her stomach completely. She’s been off the suction for over 24 hours now and her belly has NOT distended. Typically distention occurs btwn 24-48 hours so tomorrow will be a good indicator of whether or not she can handle this. If she can, they will keep feeding her this way until she gets bigger and they feel like they can try putting food in her stomach.
We still have a long road. We’ll have to put food in her tummy, wait a few days to see if she can digest it, then try every three hour feeds, wait a few days to see if she can digest it. I don’t think we’re coming home in March. But this has been a tiny bit of progress. If she can’t handle food in her stomach but doesn’t distend with the NJ tube, we may be looking at a surgical procedure to place a permanent feeding tube.
In good news: her eyes were a little better, she is pooping when they give her suppositories, her Xrays look better and she can BREATHE ON HER OWN. That’s a huge deal
In other good news? The bills I received were a clerical error. I do not actually owe the hospital hundreds of thousands of dollars for every day she has been there since February. Praise the Lord. Someone apparently entered something wrong which made the system think Scarlette’s insurance was terminated and the computer automatically printed and sent me a bill for every single day of care and procedure she’d had since February 1. That was an incredibly scary day at our mailbox. I am so happy to have that resolved.
March 7: Happy Four Month Birthday Scarlette! I am so humbled and honored at the donations that came in today for Team Scarlette’s 2011 March For Babies walk. I just got online and saw that we surpassed our team goal in less than 24 hours. We are so touched by your kindness and generosity.
Guess who graduated off the pulse ox?! The truth? They came in and told me they were going to d/c it and I was like “Wait, what?! How will I know if she’s breathing?!” Lol. Apparently I am supposed to do what every other mother does: look at the baby. It’s really difficult when all you’ve ever known is a monitor. I kept looking at the screen all day whenever she would fuss. But it’s great news for her, as it means she is breathing incredibly well on her own and not having desat/apnea spells. Big girl! She also has been pooping totally on her own and no longer needs suppositories. YAY! They upped her calories in formula and are letting her take about 5ml of milk from nursing.
In prayer requests: she has a little heart murmur and tomorrow she has an echocardiogram to see what is going on with that. Her doctor isn’t too nervous about it so I am trying not to worry. Also, she is having a bit of a growth issue. She is not growing- she’s gaining weight but her head circumference and length aren’t really changing. They are watching this closely b/c the head growth thing is apparently really important in terms of her brain development. So seriously, grow Scarlette, grow!
March 9: 4lbs 15.8oz Gaining some weight back. Her head circumference is still unchanged so we’re praying for some growth there. Her echo came back okay- she has a small PFo, which is an opening in a valve, kind of like the PDA she had closed. That is what is causing her murmur but they feel confident it will close on it’s own, thank goodness. They did an xray today b/c she threw up (that sounds weird but b/c she has an NJ tube they have to constantly monitor for signs of the tube moving out of place) but everything looked okay. She just wants to be held all day long and mommy and daddy are happy to oblige.
March 13: Scarlette has a fever – it was 101 and her bloodwork came back elevated. We don’t know why and we’re waiting for another set of blood work before we know if they will start her on a new IV with antibiotics tonight. It’s no good for babies to have fevers that high but it’s really not good for tiny babies. I know they are watching her super carefully but I am anxious and once again, truly covet your prayers. She has enough of a fight on her hands without having to worry about infection or a cold or something (which would be no good on her fragile lungs). In happy news, she weighed over 5lbs last night
March 14: Her fever is finally gone All day I was like “go down!” to the thermometer! Her bloodwork was still elevated but not as much. They don’t know what it is (this seems to be par for the course with my child, not knowing what in the heckfire is going on with her). They tested her for RSV today and it came back negative (thank goodness! I was one anxious girl waiting for those results) so they think she may have a cold b/c she is wheezy. They put her back on the pulse ox and are monitoring her pretty closely. Colds + babies w/BPD are no good but she seemed much better today, much happier and less fussy. Pretty much I laid down in the recliner and she slept on my chest most of the day. In good news, her eye exam went well and the eye dr said he was pleased w/her progress Mommy is exhausted!
March 15: Verdict is an upper respiratory infection. She’s getting extra nebulizer treatments and lots of prayers that it doesn’t develop into anything further. So far she’s handling it well for her lung capacity. It was another day of her just sleeping on my chest, she really doesn’t feel well, poor thing. Her liver levels are up again, they’ll continue to climb for a bit before they peak and go down so that is no surprise. She had a catheter put in for a bit today to test for a UTI and we don’t have those results back yet. But here is some GREAT news: She took 10ccs of a bottle today with NO VENT TUBE and she DIGESTED IT! Her tummy did not remain distended and she had two bowel movements after. This is Big. Huge. News. She was getting her 17cc per hour continuous through a feeding tube all day so to be able to handle the milk in her stomach is major, major progress. Here’s hoping that she can continue on that path.
March 16: I have a a very big (good!) prayer request tonight. Today the doctors and NPs had a meeting about Scarlette. I really enjoy that my baby gets her own meetings, lol. The decision was made to give Scarlette bolus feeds during the day and continous feeds at night. This means that I will give her a bottle every 3 hours and then at night she will be fed through her feeding tube all night long. She needs to be able to take the bottles without her stomach distending or vomitting. If she can do this, then…they are going to let us come home.
We would have an in-home nurse (not a live-in nurse) that would monitor the NJ placement and such. Eventually she will graduate to an NG tube and I will be able to put those in myself but for now she stays on the NJ tube. She may need the overnight feeding tube for a few years to give her all of the nutrition she needs.
She’s been taking 10ml in a bottle 2x a day for the last two days. Today she took 25ml and she needs to be able to take about 60ml so we have to work up to that. They are keeping her on the Elecare for now and will mix in breastmilk very slowly in the future. The NP told us that the next 24-48 hours are the critical time for seeing if she is going to distend or not. For the last bottle feeds she has distended slightly but not stayed that way, she’s digested, had bowel movements, and gone back to her original girth w/in 2 hours post feeding. What? Everyone doesn’t measure their babies belly to see if it changes by centimeters after they eat? Lol.
I am nervous and joyful at the same time. I want this to work. We have a plan. I just believe that her little body can do it. So my prayer is that she will tolerate the feeds. That’s all she needs to do, just tolerate the feeds. We’re so close. We’re SO close. If it works, we’ll have her home soon. I’m almost hesitant to share this with y’all because last time I was all “HOME SOON!” it ended up not happening. But I wanted to share what was on our hearts with y’all.
March 17: Happy St. Patrick’s Day. Do you think it’s weird that I decorate the bottles of milk that I pump on holidays? Like, I think it will make me smile when I grab some milk from the freezer and it has clovers drawn next to the date/ounces. Not much to share today. She screamed all.day.long. I am pretty sure what happened here is that her full feed bottle is supposed to be 70ml. But they decided to go slower on that and so she only was allowed 25ml. But they didn’t do the rest of the feed on the tube b/c they wanted to see how she digested the 25ml. So basically, she was stinkin’ hungry. Once they restarted the feeding tube for nighttime, she settled down and went to sleep after it had been going for about an hour. The good news is, she handled the 25ml very well. No distention but not quite as many poops as she needs to be having. Lots of gas passing though, which is very, very good.
She is having an issue with high blood pressure. The cardiologist came to see her today (Hi Dr. H!) and said that her heart looks good, which made me happy. Apparently, some preemies just develop high blood pressure btwn 3-6 months, reason totally unknown. They’ll test her kidneys tomorrow and if that test is good, they will monitor her for a few days. If nothing gets better, she’ll go on blood pressure meds 3xs a day for a few months.
She has to see a speech therapist. You’re probably all like “Um, your baby can’t talk.” You’re wrong. Scarlette is a genius and already says four different words, including “Biliruben” and “Hermatocrit.” Just kidding. Apparently the speech therapist deals with babies who have tongue thrusting issues that prevent them from swallowing correctly. Who knew? And who knew there was an incorrect way to swallow? In addition, who knew my baby had tongue thrusting issues? Yeah, me either.
She also has a diaper rash, which has her thoroughly ticked off. Scarlette I mean, not the speech therapist.
One of my favorite NPs came by today to tell us goodbye. She is going to be out of town for a little over a week and said she thought we might be gone by the time she gets back. I was all “Scarlette’sFavoriteNursePractionerSayWhat?!” (<- name that tv show) so the buzz on the unit is that we’re moving that direction. I gave Scarlette all of her medications today and am working on all the different things I’ll have to do when we have her home.
If you can’t tell, I’m feeling a little bit back to my old self. Well, I was until I cried for no good reason about twenty minutes ago. Stupid hormones.
March 18: Today I finally got the team to agree to 2 hours feeds. They kept telling me it was too hard on the nurses to adhere to that schedule. I’ve been petitioning for this since DECEMBER so I am thrilled because that is what she needs, if she needed medication every two hours they would do it and so I feel like food should be no different. Developmentally she’s less than a month old. She’s HUNGRY. And also, it seemed to work today. She would eat and then she would SLEEP. Which is so so so much better than eating and screaming herself into a fit because she’s so hungry that she can’t handle her next feeding well.
She tolerated the feeds well and her belly seems to be doing great so far. Our speech therapist gave us all a set of rules to follow when feeding her to combat her swallowing issues. So now we have to hold her sideways with her head elevated 45 degrees above her bum and push her chin against the nipple as she eats. Then she has to be held upright for half an hour after she eats. It’s working great for her, but I have to tell you I am feeling overwhelmed. Between the feeding/burping/holding it takes a little over an hour to do the entire procress. Then I still have to pump, which basically leaves 30 minutes of down time between feedings. Add in all the different medications 3 times a day and it’s a LOT. I’m nervous to be doing it by myself when she comes home. But I really think the 2 hours feeds are what she needs so we’ll adapt!
Today they kept saying “Maybe next week” to me and I was torn between kind of wanting to cover my ears and be all “I can’t hear you” because I really don’t want to get my hopes up and being like “MAYBE NEXT WEEK!”
March 21: Today was hard. Really hard. I’m just going to write and I don’t know how this will read so please bear with me. I am grateful that Scarlette is doing so well, please don’t mistake me, I am so aware of what could have been. Every time I hold her I marvel that she is with us. But I am so worn down and tired of leaving my baby at the hospital every single night for nearly five months.
Today they told us that the GI specialist won’t give permission for Scarlette to come home on the NJ tube. They are going to attempt to switch her to an NG tube this week. This is a huge attempt, putting that much food into her stomach to be digested. If it works, they want to monitor her for about a month before they will release her to come home. if it doesn’t work…then we start over on the NJ tube again in the hospital.
She’s doing great with her bottle feeds during the day but she’s started aspirating a little bit. Today she did it and milk came out of her nose, which caused her a lot of pain so she freaked out and gave herself a nosebleed from pulling at the tube. They’ll be starting her on reflux meds again this week, which makes me sad because she is on a LOT of medications each day already.
Today was the first time I haven’t been able to keep it together in months. I had to leave and sit in the car and cry today because it’s so much. Watching her in so much pain today and knowing I couldn’t help at all, that I’m doing everything I can in terms of feeding/holding/etc to ease the pain and it still being that bad hurts me. It hurts me to know that the only reason she hurts is because I had her too early. And it hurts me that I couldn’t do anything but hold her and cry with her while they told me she can’t come home after all.
I did have a firm discussion with the team today and told them that I need them to all get on the same page regarding her discharge and not tell me that it’s going to happen if it’s not. I can’t emotionally take being told that we can bring her home just to be told that we can’t days later. It’s really getting to me. I walk to the NICU in the morning and it’s beautiful outside and I just keep thinking that my Scarlette’s never taken a single breath of fresh air.
March 23: Lots of news. First: they aren’t going to put the NG tube in after all until Scarlette gains more weight. She’s lost weight the last few days so that is frustrating. I feel like we’re moving backwards. She’s on 30 calories of the Elecare and not consistently gaining/growing. This past week was the first time her head circumference has increased in almost a month. There are lots of issues that go along with the not growing thing so that’s our biggest hurdle right now: grow, Scarlette, grow!They said maybe next week for the NG tube but then they want to watch it for awhile. So we’re looking at another month or two in the hospital. My nerves regarding that situation are incredibly raw. I would prefer her to come home on the NG but I’m frustrated at the lack of information I’m getting from the GI specialist. I have another meeting w/the team scheduled so that I can get more clear cut goals.
In good news: her liver levels are down! Her total and direct bili both dropped by a point or more. One day the whites of her eyes will turn white again Speech therapy is really helping her take a bottle better. It’s really, really tough for me. I think my hands are too small to properly hold the bottle/her chin and elevate her all at the same time the way the therapist does. That is frustrating for me because I want to be the champion at bottle feeding. But she’s tolerating bottle feeds. She is awake and happy a lot during the day and sleeps all night on the NJ tube. I’m allowed to unhook her from the monitors and walk her around the unit now, sometimes she goes for a little stroll in the stroller.
She is definitely the NICU pet I never come in and find my baby in her room- she’s always being held by one of the nurses at the nurses station.
March 27: Tomorrow is NG tube day. I just found out that I have to be the one to put it in. Apparently they want me to have lots of practice. I’ve seen it done many times and I’ve known I’d have to do it but I have to admit, I’m a little nervous. And by a little, I mean OH MY GOSH I HAVE TO STICK A TUBE DOWN MY BABY’S NOSE AND INTO HER STOMACH. Right. If she can tolerate this NG tube then all she had to do is GAIN WEIGHT to be allowed to come home. We’re so stinkin’ close y’all. So maybe tomorrow morning throw up some prayers for us and this whole NG tube business. In case you missed her latest video, you can see it here. She’s such a sweetheart. Oh! I clipped her nails on Thursday for the first time! Aren’t you so proud of me? I was so scared and I totally did not cut her. She’s such a little princess, she just sat there and held out her little fingers like she was getting a manicure or something. It cracked me up. I’ve also been able to use the suction-bulb-nose-booger-sucker thing. This may not seem like a big deal but up until now they used actual suction hooked to a hose to suction out her nose. So it feels “normal” to get to use one of those bulb syringe things. Also? FIVE POUNDS NINE OUNCES!
March 28: NICU Day 141. Can you believe that? So. First things first: I did it! I got the NG tube in on the first try! I was really glad Nurse P was with us today because she was so supportive and didn’t let me work myself into a frenzy of anxiety. I’m not gonna lie: I kinda feel like a rock star. If she can tolerate this NG tube and gain weight, they say she can come home by Easter. This means I really need to take down the Christmas tree. She weighed 5lbs 9.9 ounces tonight. Her eye exam went well, she still has a bit of ROP in one eye but the dr says he feels confident she will outgrow it.
There’s a bit of good news and bad news. The bad news is that apparently Scarlette fractured her wrist. She also has fractures in both legs. There’s a sign over her bed now that says “Be careful with me, I have fragile bones.” A combination of being on Elecare and the extended use of TPN causes this to happen in tiny preemies. I was all “Did I break my baby?!” but they assured me that I did not. The good news is that the wrist fracture is almost healed and that they feel like it is what was causing her high blood pressure which means she may NOT have to be on 3xs a day blood pressure meds for a year. The heartbreaking news is: she was in so much pain and we didn’t know why! What’s worse is that she is constantly trying to hold her bottle with that hand and the speech therapist, nurses and I have been pulling it down for a week as they have been teaching me to feed her. I just feel so awful about that. Poor baby girl.
April 5: NICU Day 149. Sorry for disappearing a bit. Things are crazy around here. We know she’ll be home soon, we just don’t know exactly when. The tentative plan is for us to room in either this weekend or early next week. I am trying to get the house clean (like, floorboard scrubbing sort of clean for her lungs) and interview pediatricians and doing our taxes and spending probably about two hours a day on the phone with insurance companies and I am exhausted. The good news is, Scarlette is doing really well. She has consistently gained weight for a little over the week and now weighs 5lbs 15.8 oz. She is taking about 40ml in a bottle every two hours and she’s still on continuous feeding tube feeds at night. After some speech therapy trial and error, we discovered that the NUK nipple is a really good fit for her and her tongue thrust issues. I don’t think she’s going to need as intensive of feeding therapy after we come home.
The big news is that today we are going to try mixing breastmilk in with her formula. Please pray that she can tolerate this and doesn’t get distended. If she does, it will extend our hospital stay. I pushed for this, though, because I knew they wanted to attempt it within the next several weeks and if she DOES have a bad reaction, I’d rather us already be in the hospital with a team that knows her well when it occurs. But I am really hoping that she can tolerate breastmilk- she really needs the extra nutrients for her brittle bones and honestly? The Elecare is frightfully expensive.
Her blood pressure is still a little high but it’s a lot better and her fractures are healing up well. Her liver levels are down and her eyes are almost white!
She loves to be held and someone is always holding her. A lot of times I get there and Scarlette is helping someone do their charting. She’s babbling a lot now too, when I call at night they put her on the phone and she “talks” to me. Developmentally she is behind her actual age of five months but she can do somethings that are more advanced than her adjusted age of a month and a half- she can lift her head and turn it from side to side during tummy time, she can focus her eyes on an object and track it, and she’s starting to smile at me. She is awake a lot during the day and sleeps most of the night (b/c she doesn’t have to wake up to eat since she has the feeding tube, she only wakes up if she’s wet.) She eats like a newborn and can’t control her movements. She’ll be starting early intervention therapy when she comes home, and physical therapy to strengthen some of her muscles.
I have been learning to draw up and administer her meds and change her feeding tube and use the apnea monitor in preparation for coming home and I am feeling okay about being part mom, part nurse. It feels like a lifetime ago that she was just over a pound and barely hanging on to life for weeks.
April 6: 150 days into our NICU stay. That is crazy. Also, 150 days for y’all to learn I am very verbose. Also, I like a good use of alliteration. Anyhow, here is today’s story.
Wait. First let me tell you that my baby who weighed 1lb 8.6oz at birth weighed SIX POUNDS ONE POINT FOUR OUNCES tonight. She also gained a centimeter in her head circumference. This. is. awesome.
So today we tried giving her a bottle of breastmilk. Immediately she began screaming and spitting and trying her hardest to get away from the bottle. This is not like my baby. My baby loves to eat. They kept telling me that she was probably reacting the the different taste and I kept saying that couldn’t be right, because she takes her meds orally and the different tastes don’t bother her. Besides that, Elecare tastes disgusting and breastmilk is sweet. No one even ask me how I know this. Okay, her nurse told me. I have not been brave enough to try either but her nurse has tried all of the different formulas they give the babies. This made me laugh. So after much gagging, screaming and general upset I stopped the feeding after half a bottle. They gave her the rest through the feeding tube and I felt like it wasn’t going to be worth it for her to waste that kind of energy on eating, especially b/c she takes an Elecare bottle so well.
A little bit later her tummy distended and soon after that she choked, bradyed and projectile vomitted everywhere. I bathed her and she calmed down. We gave her the next bottle Elecare only and she took it fine, no distention and no spit up. The consensus is a breastmilk intolerance. The good news is, her distention went down on it’s own after she vomitted so no need for suction, so this won’t set back our discharge.
I have mixed feelings. I am actually not as disappointed as I thought I’d be that she can’t have the breastmilk. For one thing, I’ve been exclusively pumping for 5 months. I’m ready to throw my pump out the window and back over it with my car. I almost can’t imagine what it will be like not to wake up to pump in the middle of the night anymore. I really WANTED to breastfeed Scarlette and I’m sad that she can’t take that nutrition because she needs it but I am not worried about missing out on an emotional bond. I think we’re pretty darn bonded And I take some comfort knowing that preemie-mom milk is desperately needed at milk banks and I have hundreds of bottles to be sent to sick babies. That helps me feel like all that work wasn’t for nothing.
My big worry is that we don’t know WHY she can’t take it and what is causing the intolerance. It causes her pain to eat it, which is fairly rare and in some of the cases they’ve shown me there never IS a reason. The babies just are in severe pain when eating anything and some are on Elecare for up to two years old or more. We’ll be working with a feeding specialist but I am hopeful that she’ll be eventually able to eat something. I am thankful that she does not have to be on TPN longterm and that Elecare is an option for us. I am glad we tried the breastmilk in the hospital where she could be monitored as we did it. I think if she were younger I’d be very sad, but at this point I am happy with whatever we can get.
We’re still looking at a discharge being set for next week Wish me luck on becoming a super organized stay at home mommy/nurse in the next seven to ten days. At least the Christmas tree is finally down.
April 12: HOMECOMING!!