Colette's Birth Story, Part II

As Colette continues to make improvements, I'm becoming more curious about the day she was born and am actually ready to hear it. Last week, she had a nurse who I hadn't met before who told me she hadn't taken care of Colette since the day she was born. Sure, she's come a long way from that first day, but she's come even further from her bad regression at the end of June and this nurse didn't know much about that beyond what's passed on during reporting at shift change.

So I asked the nurse if she remembered that day and she said of course she did. She took over at 4pm and needed two other nurses to help her throughout her shift. Most nurses take care of two babies during their shift, so it definitely says something that Colette needed three nurses, plus a doctor and a respiratory therapist (RT) throughout that first day. She also told me how the RT was basically giving her breaths through a mask for 2 hours straight while they tested different forms of respiratory support. I asked her if it was 'chaotic' and she said it wasn't. In fact, there were periods of calm as they needed to test different things to see what would work and that often involved some downtime. She also mentioned that Andrea had been her daytime nurse. Andrea is someone who I've seen around the NICU many times but had never really talked to and as far as I knew, she had never taken care of Colette. So when I heard this, I made sure to talk to Andrea the next time I saw her.

She described being called to the 'crash section' as they called my emergency c-section. She was one of the nurses in the room for the procedure, along with several others, two doctors and two RTs. Andrea was in charge of confirming a heartbeat. Sounds easy enough, but Andrea wasn't able to hear a heartbeat. Apparently two RTs immediately started chest compressions and Colette sort of startled and started moving her legs. There was so much fluid in the chest that they couldn't hear her heart. Andrea was under the impression that we were expecting a stillbirth, when it was the opposite. A perinatalogist had told Dave and I a few days before that the baby would be born alive, but beyond that, they really didn't know. Apparently while the baby's heart had been monitored the whole time I was in the hospital, it wasn't monitored while I was moved to the OR. Andrea remembers my ob noting that the amniotic fluid was 'bloody' - I guess they usually say if it's bloody, clear (what you want) or meconium. Bloody means there's been a placental abruption.

After they confirmed she was alive, she was intubated (while given 'breaths' with a mask over her nose). They tried to pull out some fluid from her chest with a needle but weren't able to so they worked on putting in the chest tubes. Dr. Lewis put in one and Dr. Kaleem put in the other on the other side. The fluid started draining immediately. They pulled out over 200ml (at least 7oz) and had to change the fluid reservoir. At one point back in the NICU, they needed to replace the chest tube as it had gotten clogged. Again, fluid started pouring out. Andrea said that her bedside was pretty busy throughout the day, with a doctor, RT and at least one nurse monitoring and adjusting things.

I guess Dave went straight to the NICU and was in there for a bit waiting with the social worker, with Andrea coming over to keep him informed on what was going on as the doctors were just to busy working on her to talk to him. The wheeled me in a few hours after delivering and I remember being so surprised that it was so calm (that's probably why they were able to bring me in). No one was around her, I was able to put my hand into her isolette. It didn't seem that bad. What was bad was the hours that afternoon when I didn't get a call back from the NICU when I called to check on her and they were too busy and she was too unstable for them to get back to me. Her oxygen needs were in the 80s, which is just ridiculous, though I think they were able to start weaning her down a few days later.

I still don't remember much from those first few days. I remember feeling relieved after Dave came in to tell me how she was doing, since it seemed like she was doing better than we expected her to be, wasn't quite as swollen, etc. For me, if Dave had been a mess, I would've lost it, but he was pretty optimistic about the whole thing, so at least while in the hospital, it was okay. I remember being on a high after she was delivered. I definitely couldn't sleep that first day but I did let myself sleep all night before starting to pump the next morning. I was still recovering from the c-section and very little sleep in previous days so I remember being in my postpartum room a lot by myself. Dave would usually come around 11am and we'd go visit her together, then I'd go back and pump and rest. Some days I'd see her again midafternoon, but often I wouldn't go back until that evening with Dave after he had put the boys to sleep. It's odd to think I didn't spend that much time with her when I was still there but I guess there really wasn't much I could do.

I still can't fully picture what the first day was like for the doctors and nurses and how bad it really was (Dave claims it wasn't 'life or death' that day but who knows), but I'm (and she is) at a place now where it is nice to have a fuller picture.


W&G Lately (40 Months)

It's been a much better month. If things are going well at the hospital, then that really has a positive impact on everything else. I feel like Dave and I have found a pretty good rhythm with being present for the boys and spending time with them on the weekends. We've had lots of fun adventures this month including a trip to Train Town in Sonoma yesterday. They've also had a lot of birthday parties, we went to the opening of the new Mission Bay playground, Sutro Baths and the Kite Festival in Berkeley.

 

They finished up summer school at Calvary at the end of July and then had a week of art camp, which they loved (and were covered from head to toe in paint each day), and then have gone to outdoor camp Mon/Wed/Fri for the past two weeks. That left some open days which Jessica came early for and they had some fun adventures together like going to the zoo, the Exploratorium, and Discovery Museum. It's a bummer to see them do this stuff without me -- I'd love to be taking them myself, and obviously could, but I want to be with Colette. It will be nice if we're able to do all this stuff together in the future.

They don't have any camps for the next two weeks so they'll get extra time with my mom and also be with Jessica. It would be nice to take them on some adventures before they start preschool in September, but again, we're focusing on what's most important.

Quiet time is going relatively well, I think William naps most days, George sometimes does. I only do it on the weekends but lately they've tended to give me more trouble and don't stay in their assigned spot (either bed or couch). If they end up together, no one naps, thus it's necessary to separate. The games and toys still seem to be doing the trick when they do end up resting. Bedtime has been going okay. William has been calling us down saying he's scared so we deal with that. G seems to have endless energy at all times of the day so he's usually asking for another kiss, drink of water, needs to get another book, etc., etc.

G continues to have accidents, I guess mostly due to being lazy. He hates being asked to go potty, so we try to avoid it (and have pretty much stopped with W because he never has accidents and gets really mad when we ask him to go). I don't think there's much to do with this and just hope it sorts itself out. It's not happening every day, but it's definitely frequently enough.

Eating has possibly improved a little but not much. They generally do well with their lunch and are getting a bit better at finishing their breakfast. Dinner is still hard. We have the most success with grilling meats, they both do well. Jessica makes smoothies and luckily they're a huge hit. She puts tons of fruits and veggies in them and G especially likes them so at least they're getting that.


There's been a bit more fighting, a lot of crying and a lot of screaming, 'you're a baby!' while the other is crying. There's even been the occasional bite. William especially has thrown some obnoxious tantrums lately and he's just so dramatic I have to keep myself from laughing. With that said, they still play really well together. They've played with toys a bit more this month but continue to do imaginary play like garbage or firefighter. I ordered two small (like what you'd have by your desk in an office) trash cans and G especially has really liked loading up books and other 'garbage'. Anytime we have a box with a bunch of packaging, he always asked excitedly, 'can I have this for my garbage??' :)








I rarely update on their talk anymore as they say pretty much anything, but I have noticed a few toddlerisms. They definitely don't get the tense right a lot of the time... 'you maked me a sandwich' for example. And they also says things like this a lot, 'can you put on it?' instead of 'put it on'.

Mom: I added exercise back into my daily routine this past month and it feels really good. It breaks up my day a bit and fits nicely into the routine. I lost the first 25 pounds relatively quickly but I still have about 4lbs to go that don't seem to want to budge. We've had so much take-out that my diet probably hasn't been helping but we're definitely eating mostly homemade food again so hopefully that helps. The majority of my pre-pregnancy pants are still too tight in the waist so I'm still wearing some of my maternity jeans  (which are definitely feeling a bit loose) and got a couple pairs of new pants in a size bigger than normal. Dave and I have been able to do our weekly date night each week which has been a lot of fun since we really don't have much time just the two of us. We may even try to do an overnight away just before Colette comes home. We'll see.

To my boys... It's getting harder and harder to keep up with all the funny things you say and do, partly because I'm distracted but also because I'm not spending nearly as much time with you as I have in the past. I'm grateful you've adjusted so well and I do feel like I get several nice chunks of time with you, usually from 7-9am and 5:30-7:30pm. I get jealous that Jessica gets to take you on fun adventures during the week (it's easier when I just drop you off at camp), but also know being at the hospital is most important right now and it's where I want to be. You've both been so understanding with this, in fact, you say, 'Dad goes to work, we go to camp and you to the hospital'. We all have our jobs. You've seemed so grown up to me this past month. I'm not sure what it is in particular. I guess size-wise you're both growing, and your new Calvin Klein underwear are the cutest and make you even more grown up. You no longer use a booster at the dinner table and often ask for 'adult' plates, forks, etc. and big glasses. You're both getting so much better at getting yourself dressed, though there are plenty of times you're still too lazy to do it. You came with me to the hospital this morning and you both are so good in there. You read books to Colette, tickled her toes and shook toys in her face. I can tell how much you love her already and know that you're going to be the best big brothers once she's home. You've got exciting things happening in coming weeks including starting preschool, and hopefully welcoming Colette home.

W&G notes:


  • Dad calls you the 'Kings of Clay Street' since everyone knows you at that park.
  • The teacher said, 'Awwww, we're gonna miss these guys!' on your last day of summer camp at Calvary.
  • The teacher at art camp told Jessica what good listeners you were when things got a bit chaotic one day.
  • You guys are getting to be great swimmers! You're about a foot away from being able to swim the width of the pool. I now can take you to the pool on my own, so much fun! 
  • We had fun watching some of the Olympics (gymnastics and swimming) and had a good run convincing you that eating healthy makes you swim fast or be able to do flips. G asked if they ate dessert and I told him no, because dessert isn't healthy. There were random moments when you ate a little better but didn't last long.
  • We went to the opening of the Mission Bay playground and waited in line to get your face painted. Multiple kids before you would wait like 15 minutes and then get to the front and not want to do it anymore. Neither of you had any problem sitting down with them and telling them what you wanted (W chose a princess butterfly lion)

  • You guys tend to wake each other up in the morning (on purpose), so we're working on leaving the other one sleeping and coming upstairs so everyone can sleep as long as they need to. Some days it works (W is better at leaving G sleeping).
  • You both love the roller coaster at Train Town (though G does get a little nervous, which he admits)
Waiting for the garbage truck



William. You've sort of had a rough month. You weren't feeling well, I don't think you get as much sleep as you need with G waking you up in the morning or keeping you awake at quiet time. This all leads to some serious grumpiness. Sometimes you wake up in a terrible mood, most days if you nap, it's no fun waking you up. There are plenty of moments when you use this deep, annoying voice with these mad eyes just to show us how mad you are. You also beat up on G quite a bit, but most of the time he's pushing your buttons so I really can't blame you. I'm proud of you for how much more independent you are now - you'll get dressed on your own (sometimes), go potty by yourself, much more likely to pull up your pants and you play really well by yourself too. You continue to make friends so easily and still are attracted to big kids especially.

W notes:


  • You often say, 'can we come here again?' when you really like something. You've been doing this a while, but it's still one of my favorite things to see you so happy.
  • We've changed the bedtime reading set up and now and instead of me switching beds for books, I sit on the floor and lean against one of the beds, stretching my legs out straight. You get settled in on top of me, stretching your legs out along me, with your back against my front. G is usually too antsy, moving around doing all kinds of stuff during reading time.
  • You've started calling me back downstairs at bedtime to tell me that you're scared.
  • You had your first nightmare (at least I think) a few nights ago. Dedee was sleeping on the couch and went in several times before we heard you upstairs. Of course, even in your sleep, you only want Daddy so he had to go down several times throughout the night.
  • You were so scared when I had to take G from the park to the hospital to get his chin fixed up and you had to go home with Jessica. You kept shouting, 'I need to go with my brother!'. We later figured out you thought G would have to stay at the hospital like Colette.
  • You were at a birthday party at a park where the parents had dumped a bunch of the birthday girl's sand toys for everyone to play with. You were playing with a truck when the birthday girl came up to you and tried to take it away. You guys went back and forth using your words and when she snatched it away, you shouted, 'you're not gonna get to open any birthday presents!'.
  • You picked out a sock that didn't have a mate the other day and then told me, 'I think it's at Stowe Lake, I think we need to go back'. You love going to Stowe Lake and you made this comment so nonchalantly.
  • You were sick with a fever for several days in a row.
  • Many days you have the attitude of a teenager. 'Don't look at me!', 'Don't talk!', 'Don't be right here!'.


George. You're still so particular about things and definitely throw a fit when you get frustrated and things aren't exactly how you want them. For all the rules you love to know about and signs that note these rules, you don't always follow rules. You're still so obsessed with garbage and it's by far your favorite game. You've been pretty attached to dad this month and even asked him if he could not do his workouts in the morning as you want him to be here when you wake up.

G notes:


  • While at the Academy with Dedee, you loved looking at the different compost, recycling and garbage cans. Dedee told you the trash can was called 'landfill' and you said, 'no Dedee, landfill is where the garbage gets dumped'
  • You've been talking about pepper soup for weeks. It all started when I asked you what vegetable you'd eat. You chose peppers (which you wouldn't eat when offered raw) but went on and on about making a pepper soup -- even so far as adding carrots, zucchini etc. We finally made the soup (not even with other vegetables) and surprise, surprise, you didn't touch any of the peppers. You then told me, 'I just wanted to talk about it, I didn't want to eat it'.
  • I finally put on Coldplay's Yellow for you honoring your favorite color. Now you ask for it often and love to hold my hands and dance around the kitchen.
  • You still love signs and told me we needed to bring a sign to Sutro Baths that said, 'watch out sandy stairs'
  • You also asked for a sign in your room and dictating the rules. Some days you do really well with making your bed and taking off your pull up, other days you don't...
  • You often comes to tattle on W and I'm trying to teach you that distraction or not making a big deal about what you want will lead to the other forgetting about it. I told you to ask W if he wanted to ride bikes, to get W to give up the table, but then you got distracted and and wanted to ride books too :) Can we come here again? W
  • Always aware of rules, when you're playing with your cars in the backyard, you say, 'you better curb your wheels or you'll get a ticket!'. You also ask me if I've curbed my wheels when I park.
  • You do not like pirate stuff nearly as much as W and one day you had a complete breakdown crying, 'William won't stop saying 'shiver me timbers!'
  • You sliced your chin open at the park and were pretty upset. Dad was extra sympathetic to you at the hospital. They let you look through their book of DVDs to pick something to watch and you picked out a pink Barbie DVD but then the DVD player was broken so you didn't get to watch it. When you were all fixed up, they gave you a Popsicle and you asked if they had a bowl for when it started dripping.
  • One night during books, you asked me when you could walk out of the house on your own and go down the street. You even acted it out, 'I'd close the door and then say, 'bye mom'' which you said with a higher shouting voice just how you'd shout goodbye to me.
  • You got to see a yellow garbage truck, best day ever!

Helping to paint Colette's drawers

Baby Colette: Three Months Old



As I look back at last month's post, it's incredible to see where we are now. Colette still has a long road ahead of her but she's making huge leaps that, honestly, I don't think the doctors thought she was capable of. A month ago, she had started improving after the July 7 biopsy. Today, should could pass for a 'normal' baby. The past three weeks especially have been huge. She's been able to wean off of the non-invasive cpap (that was connected to the ventilator). They tried to wean her to regular bubble cpap on July 20, and unfortunately, she only made it a few hours. It was disappointing. In the meantime, she was weaned off various medications and was dealing with withdrawals. She built up to full feeds and then they began contracting her continuous feeds down -- first to 2 hours, then to 1.5 hours, then to an hour. She had some spit up with that, so they increased up to 75 minutes before getting back down to an hour.

Two weeks ago today, she was again weaned down to bubble cpap, switching between two mask sizes to protect her skin. She made it an hour or so before she started retracting and I started getting really nervous. Where would this leave us if she still couldn't go on cpap? I think it was tough because all the respiratory therapists, nurses, and I were all pretty confident that she would do well. For the past week, she had been getting a 15-20 minute break from all support while she got a sponge bath, changed linens, etc. And she was not retracting and her numbers looked great. This was so exciting so when I saw she was retracting, it was disappointing to say the least. I chatted with the doctor, they considered doing a chest x-ray, and ultimately decided to bump her up to a pip of 8 (usually they don't use 8 or 9 which are considered pretty high on bubble cpap, they would instead do the non-invasive ventilator cpap). I was on edge all day expecting to hear that they had had to put her back on the non-invasive, but when I came back that afternoon she was still on bubble cpap. When I left, I glanced at the machine and noticed that she was back on a pip of 7, where she had started that day. It appeared her body just needed some time to adjust to working harder, but she was looking great and not working hard to breath. What an enormous relief! Though I wasn't sure how long it would last... Regardless, I was so glad the doctors gave her a chance and didn't put her right back on the non-invasive. That would've been another set back and I was thrilled she was tolerating the new lower support.

Over the past two weeks, she's continued to wean on the cpap. The first week they didn't make any changes. It was already a big jump coming off the non-invasive. This past week has been so much faster and I can't believe she's tolerated all the changes. They've switched between different masks, then when she outgrew one of the masks and they didn't have another one to switch into, they started putting her on a less cumbersome cannula (which provides less pressure) and switching that with the mask. Last week they also let her nipple on a bottle for the very first time, and for this, they switched to her a nasal cannula (just for feeding) which offers even less pressure. She tolerated all of it with perfect sats and on room air at 21%. Two days ago, she was switched to the cannula full-time and still looked great; yesterday they lowered her pressure support down to 5 (after slowly weaning down from 7 a week ago) and let her come off all support for her two bottle feeds. Today she came off all respiratory support completely. I truly can't believe it. When we got the cat scan results, we were given a range of outcomes... from bad to very bad. When I asked if there was a possibility that we'd take her home somewhat normally, you know, strapping her in a carseat and saying goodbye, the answer was no. We were told that the prognosis is generally grim, and if it's not, we're looking at longterm oxygen support. What we're looking at today is nothing short of a miracle. Thank you for all the prayers!

I'm well aware that even if she's able to be off all respiratory support right now, that doesn't necessarily mean we're in the clear, but it's certainly promising. Unfortunately with her condition being so rare, they really can't tell us what will happen, but they've made it clear that they wouldn't be surprised to see her readmitted to the PICU at some point (or multiple times) in the future. I think there's always the possibility of her needing additional support at night, or when she's sick, but all of that would be nothing in comparison to what we were expecting in the best case scenario.

Over the past 2 weeks, she's also weaned completely off of the methadone and is showing no withdrawal signs (a doctor had previously told me that if she went home, she'd go home on it as it's such a long weaning process). She was also getting ativan for anxiety as needed and she's been completely off of that for at least two weeks. Thursday was a big day as she got her Broviac catheter removed. This was a line that was placed during the lung biopsy to have easier access to drawing blood, labs and giving medication. It's like a more permanent IV. It's always a toss up to take it out or not -- you want to keep it in if you think you'll need it as she then doesn't have to get pricked multiple times, but there's obviously a risk of infection as well. They drew some final labs from it earlier in the week and when all the numbers looked good, they decided they could remove it. She did great.


If you remember the photo from Colette's 2-month blog post with all the different medications, it was a bit ridiculous. Today, Colette has one machine, a feeding machine. Just yesterday they consolidated her feeds to 30 minutes and while she didn't spit up, she seemed irritable after feeds so they're bumping it up to 45 minutes. She is on phenobarbital once a day to help with her cholestasis, which was caused by being on IV nutrition so far which is really hard on the liver. Getting on milk feeds has helped this as well. The good news is that cholestasis is reversible, the bad news is that it takes a long time. Three weeks ago her number was 13 and we're looking for it to be less than one. Two weeks ago it had a huge drop to 10, the doctor was thrilled but said not to expect that again, that it would be a very slow process. Well, last week it dropped to 6. We were thrilled!

So to sum up where we're at now... Colette is currently completely off of all respiratory support. She has a feeding tube in her nose and is getting her feeds over 45 minutes. She attempts a bottle twice a day and takes anywhere from 5ml-35ml. The only medicine she's on is phenobarbital, though she does get some vitamins given through her milk. So where does this leave us? I don't want to jump the gun, but I will be optimistic and assume that she'll be able to stay off respiratory support. Which means her big hurdle is taking her feedings by mouth instead of through a tube. If she's not able to, there are options for us to be able to take her home and manage tube feedings, but the goal is definitely for her to take at least the majority of her feeds by mouth.

Recap of progress day by day:
July 19 - more weaning on the pain meds
July 20 - tried to wean onto bubble cpap but couldn't handle it
July 21 - lung biopsy confirmed pulmonary lymphangectacia
July 23 - you snapped your pic line, so they removed it and did not replace it since they were almost done with it anyway
July 24 - cholestastis seemed more evident (yellow eyes, slightly swollen liver)
July 25 - up to full feeds; no longer has a personal nurse/share with one other baby
July 26 - Octreotide is fully weaned
July 28 - you managed to get your chest tube out; it hadn't been putting out anything so they kept it out
Aug 1 - started contracting the feeds
Aug 2 - working on weaning the methadone
Aug 3 - first real tummy time
Aug 4 - weaned onto bubble cpap
Aug 6 - last ativan for anxiety
Aug 7 - breast fed on  your own, finding the nipple and latching
Aug 8 - first bottle; passed her hearing test
Aug 12 - continue to wean on the respiratory support
Aug 15 - passed her physical therapy assessment, she just has a flat heat
Aug 18 - Broviac taken out, first tub bath, doing great on the feeds, new record of 38ml
Aug 19 - last dose of methadone
Aug 20 - weaned completely off respiratory support (!!!)

I'm feeling optimistic about bottle feeds. It's pretty crazy for a baby to not attempt 'nippling' for the first three months of their life. She's obviously had a rough start and being intubated for about a month in total would certainly justify an oral aversion. But we're so grateful that she's showing no signs of that. She takes a paci well (though there are definitely times she doesn't want it and has spit up after someone has pushed it too much on her). She's even latched on my breast briefly (though I'm only allowed to attempt this right after I've emptying my breast by pumping as she can't have my breast milk). We've been introducing the bottle for the last week and though it's certainly slow going, there are lots of good signs. First, she's starting to wake up before her feeds so she's feeling hungry (hard to do when you're on continuous feeds like she was before). She's also giving cues that she's hungry: getting fussy, but also lots of rooting, etc. The first 4 or 5 days of working with the bottle made me a bit nervous because we had to go so slow, I had to manage her and not let her suck too much because she's never had to do the suck-swallow thing and was very uncoordinated which meant that she sometimes coughed or gagged. Our main goal was to avoid her having an aversion to the bottle, so we wanted to take it slow, let her get comfortable with the feeling of sucking and having something come out and go down her throat. The good news is, she's done great with that. Despite a cough here or there, she often rooted for the nipple immediately. The speech therapists worked closely with me on technique. Over her first full week of bottle feeds, she was taking about 4-5ml... out of a 92ml feed. Whatever she didn't take, she got through her feeding tube. She had one great day last week of 10ml, but I could tell it was going to be a slow road and it was unclear about whether or not she'd be able to successfully bottle feed versus keeping a tube in. Well, several days ago was the best day ever. She took 26ml at her 1pm feed! I couldn't believe it. It seemed like everything clicked. She got in a rhythm, had no coughing or gagging, took breaks when she needed too and kept drinking. I was so proud and sharing the news with all the nurses. Of course, you wonder if it's a fluke. Well, the doctor changed her order after the success and said she could be offered a bottle twice a day. So after her first tub bath last night (Yay! With her Broviac finally out, she's line-free and could sit in the tub!), I offered her a second bottle of day. I couldn't believe it when she repeated the smoothness of the 1pm feed, and ended up taking 38ml. I honestly don't think I've ever been prouder of anything in my life. Even though it was almost midnight by the time I got to bed, I was too excited to sleep. I saw that she can really do this and am confident she'll figure it out. Of course, yesterday she never got into a rhythm at the 1pm feed and only took 9ml. Last night and today, thankfully, were more successful, ranging from 20-31ml. Regardless, I think it is a huge confidence boost to see that she's physically capable of taking that amount comfortably and that with time, she'll slowly be able to build up and hopefully take full feeds by bottle.

Everyone I've talked to has warned me that this can be the tough part... feeding can take soooo long and often it's the last thing keeping them in the NICU. We've come so far that feeding seems like a blip on the radar. But it's funny how when things were bad, I said I could wait as long as necessarily as long as she was relatively healthy. Now that she's made such huge progress and is where she is, I'm greedy and just want things to speed up so she can come home. She's in such a great place that I just need to be patient and be prepared for two steps forward, one step back and hope we get there in the end.

One other aspect of feeding that we've been working on is introducing breast milk. With her condition, processing the fats in breastmilk is difficult for her body and causes the fluid accumulation. I'm still pumping, I guess just because it breaks up my day at the hospital and makes me feel a bit more normal to be able to chat with the other moms in the pump room. I was starting to give up hope on her having my milk but then started researching more on skimming the fat out of my milk. I read about this early on but when I asked the doctor, he said they didn't do it there so that was sort of the end of the conversation. I've connected with several other parents who have done it in our same situation and some of the top children's hospitals in the country are processing in-house. I brought this up with my doctor 3 weeks ago and luckily she was open to researching it, speaking to a dietitian at one of these hospitals, as well several others. It's been slow progress on seeing what could be done and at this point, I'm not really sure what chance I have of using it. I do want to see all the research before we make that decision. There's always a risk of fluid reaccumulation and having seen her come so far, I know both Dave and I are on the same page that we don't want to jeopardize her current status, but there are huge benefits even to skimmed breast milk and since Colette's immune system is already weak, I'd love for her to get a boost this way. We're meeting with the doctors at the end of next week when they will present several plans to us with different options. Fats will slowly have to be introduced into Colette's system eventually, so we're looking at when that would be and if it makes sense for that to come from breastmilk.

On a different topic, there has been some discussion of moving her up to the PICU. I'm not into this idea at all. Yes, you get your own room up there which means you can be with your baby 24/7, sleep there, etc. I think you're also expected to be there much more than in the NICU. As babies get older, the NICU is more limited in what stimulation developmentally can be offered. With that said, I know everyone in the NICU and dream of how great it will feel to one day leave there with everyone celebrating with us. It will be so anti-climatic if we're moved up to the PICU for our last week or two and go home from there. It may come down to a space issue and if they start getting a lot of babies in all at once, she would be the first to be moved upstairs, which I totally understand. But if we're looking at our stay being within the weeks range instead of months, I really hope we can finish up where everyone knows her. The neonatologists have also made the argument that they want the doctors and nurses upstairs to get to know her since it's likely she'll be readmitted at some point. That makes sense too, and they have been sending down some of their nurses to work with Colette so they're familiar. We'll see if we're able to keep her where she is. Thankfully, developmentally, Colette is on track. She's had an assessment with physical therapy and everything looks good, tone, response, etc., which is great considering how much time she's spent in bed. The only thing we're working on is her flat head (again, what do you expect with all that time in bed!) but the doctor is confident that her head is still soft and should hopefully round out on its own (not that it matters in the scheme of things anyway!).

That pretty much sums up Colette's month. It's crazy how much she's grown and she seems like a completely different baby than she was 6 weeks ago. She's looks so big next to all the preemies. Literally she's in a room with babies who are like 2lbs and she's 12lbs.

You know you’re been in the NICU too long when...
  • They have to order diapers from the Pediatric unit 
  • You’ve outgrown the cpap (XL mask is quickly getting too small) 
  • You’re passing clothes you’ve outgrown to other babies in the NICU 
  • Everyone keeps talking up how great the PICU is 
  • They have to special order feeding bags as you’ve outgrown the oversized syringe they feed most babies with 
  • I haven’t worn my wedding ring in months (not allowed in NICU) 
  • All the beeping monitors have become white noise to me
  • The smell of the NICU is oddly comforting
  • My hands are so dry from the obsessive hand-washing
  • We're working our way through the second rotation with each of the 5 doctors (2 weeks each) 
  • I've met every nurse in the NICU 
  • I set up my own chair, put away my own pumped milk, etc 
  • You’re starting to coo 
  • Your cry is no longer the cat-like cry of a newborn 
  • Everybody knows you 
  • You smile on command 
  • You’re getting your vaccines in the hospital 
  • You’re too big for newborn clothes and are quickly outgrowing 0-3. You'll definitely go home in at least 3-6 month clothes
  • The nurses start relying on me more and more, letting me turn off the monitor alarms, etc.
  • My call log looks like this:
 

Colette is very special in the NICU. I've spent a lot of time talking with nurses and they're pretty candid about the fact that they just can't get emotionally attached to the babies. Two I was talking to admitted to crying in the shower, but they both agreed that you always need to be strong while working. With that said, it's impossible to not get attached to your primary baby. We have 6 different primary nurses (most people just have one but I pushed for more and then it seems like people wanted to take her on as a primary too). Basically a primary is someone who cares for your baby every time they're working. For some shifts, I have 2 primaries, well, I guess one primary and one secondary, so if both are working the primary gets Colette. It's on these days that I usually get the secondary coming over to give the primary a hard time about getting 'her baby', in a joking way of course. Though there have been times when my primary hasn't gotten her because they've had someone with her who had a 12-hour shift or something and my primary gets annoyed and says she's going to go talk to the charge nurse... they become pretty possessive (in a good way:). What's special about Colette is that she seems to have stolen the hearts of just about everyone in there, even beyond her primary nurses. I think this is partly because a. she's been in the NICU for so long and b. she's an older baby, which they're not used to, and therefore more alert, responsive and even smiles sometimes. This will steal anyone's heart! But even beyond that, I have respiratory therapists, or random nurses who I don't ever remember having her who are always popping by to see how she's doing. I've been told on numerous occasions by different nurses who I don't know very well how much they love her. Last night she had a nurse from the PICU for the first time and when I got in this morning (she had worked all night), she told me how Colette is clearly a 'fan favorite' that various nurses and RTs stopped by throughout the night to check on her. I absolutely love to hear this! I have nurses telling me how 'inspirational' she is. There's really no better feeling than knowing what an impact she's had on so many people in her short life so far, especially considering they're sort of suppose to keep the emotion out of it. It's also nice to know she's in such great hands when I'm not there.

Colette, my sweet, strong, brave, happy, inspiring, amazing little girl. I know Dad is not a fan of the word amazing, but honestly, you continue to amaze us and everyone around you every day. I feel like I've experienced a different level of love when you arrived. Not that I love you more than your brothers, but your struggles have pushed me to a different level of being a mom. You've taught me to do things I haven't had to do before, you've forced me to become more patient than I ever thought possible. In this moment, you're my top priority, you're who I want to be with, I would do absolutely anything to take away all this pain you've had to go through. I think a lot of becoming a parent is being ready to give yourself to someone else and be selfless. I'm not saying that as a mother I shouldn't stay involved in things that are fulfilling for me, but even with your brothers, balance was key and honestly, I was still a bit selfish. When things looked bad, and the best case scenario was you coming home on oxygen, I really do feel like things changed. As Dad and I discussed what our life would be like, I was sad for you, and I was sad for how your brothers' lives would change, but I was not sad for me. I somehow was able to take the focus off of myself. When you were first born, there was still a lot of focus on me. How hard this was going to be for me to wait for you to come home, etc., even last month the post listed out all the stuff that I was letting go. Things have continued to evolve and you've really changed me. I started to have thoughts about what life would be like and none of what could be considered losses for me personally phased me. I'm far from a perfect mom, but I do feel like for the first time I get this whole selfless thing. None of that stuff matters anymore. If everything has to change and even if I'm unable to do certain things I really enjoy, there truly is zero resentment. You're here with us, and that's all that matters.

All about you:
  • You have big beautiful brown eyes -- your brothers' eyes took a while to settle in to a color, yours have been a dark brown from day one.
  • You have curly hair! All the nurses comment on it and for a while, I dismissed that it was just oily and matted from laying in bed. Nope, there is a curl to it. Who knows where it came from, but as Dad says, no one in the family has a lung issue either...
  • You are so alert and love to look around. People are always coming around to say hi to you and since I'm usually holding you, they stand to one side of the chair or the other and you just stare and track them.
  • You love your mobile, you also love looking in the mirror.
  • You do pretty well with tummy time, which we occasionally do in the bed, but mostly I do when I'm holding you and lay you over the boppy. Often I'll put the mirror right there for you to look at yourself.
  • The heartbeat on your sound machine is most comforting to you.
  • You're a good sleeper and it sounds like you're more consistently sleeping from 1-7am (I guess it helps that you get fed through your tube and don't need to wake up to eat!). 12am-1am seems to be a fussy time.
  • You love the male RTs, Cody in particular.
  • Your favorite book is Fuzzy Bee, thanks Meyers!
  • You've taken to your wubbanub kitty to help your paci stay in but haven't really taken to the lovey blanket I got you.
  • You're tolerating headbands nicely (so much fun now that your cpap headgear is off!)
  • Your bottle lip quivers when you cry.
  • You do not like being in a wet diaper.
  • You smile a lot, people are always telling me how you smiled at them. I actually don't get all that many smiles directly to me... maybe you're bored looking at me, that's okay :)
  • You love looking up at the big screen near your bed that displays the time and any L&D pages to the NICU staff. The supply cabinet and exit sign, also visible from your spot, also capture your attention.
  • You run hot. We finally were able to put you in clothes a few weeks ago and you're starting to adjust to them now, but in the beginning, you were sweating through an outfit immediately.
  • You finally had your first tub bath the other night. You were not a fan. They swaddled you which I guess is a preemie trick and maybe that helped a little. We were able to get you clean but you weren't too happy. You barely fit in the little tub they had. Your primary nurse Elizabeth got to help me bathe you. She thanked me for letting her be a part of it and said she had been looking forward to that moment for weeks. (Me too!)
  • You cross your feet like W did as a baby. In fact, there are lots of little mannerisms, faces, etc. that I recognize from your brothers as well.

  • Dr. Richburg was cooing at you one day a few weeks ago, saying 'Hi Colette, can you give me a smile?' and on command, you give her a big smile. I think we were both surprised, it was the best!
  • For all that you've been through, I still can't get over what a happy, calm baby you are. 
We are so incredibly proud of you. You have so many people rooting for you. You've spent 96 days in the NICU and while you're getting closer, we still don't know when you'll come home. But we're ready. I dream of the day we take you outside (and hope to convince Dad to let us walk you home in the stroller instead of driving) -- I don't think there could be anything better than walking to the hospital like I do every day, but that time walk home with you with us. I know you can do it. I'm not sure if it will be before next month's post, but that's okay. You've got this! And we love you so much!!