Colette: 4 Months Old

We were hoping Colette would be home by her four-month birthday and she was! After 114 days in the NICU, Colette came home on Wednesday, September 7, exactly two months after her lung biopsy, and 10 days shy of her 4-month birthday. She's been home for two weeks now and everyone is settling in well to the new routine. It was definitely a surreal experience to have her here at home, and to not be going to the hospital every day. In fact, it's been an adjustment for all. I got plenty of text messages within the first few days of our departure -- everyone was going into withdrawal at the hospital and they needed updates! :) I still need to do a post on our last days in the hospital and the big party we had to celebrate with everyone in the NICU on the day of her departure. It really was everything I had dreamed about and I still can't quite believe we are where we are.

Recapping her last month medically is hard, it actually already feels so long ago that I need to look back on my notes. She was already off all respiratory support and we had started bottle feeds. It was right around 3 months old that she started taking some bigger volumes, getting very close to full bottles feeds, however, it still was hit or miss. She'd have a big bottle here, and then a couple smaller ones would follow. They gave her a daily goal and she was doing well, but not quite meeting it. Anything she didn't finish was gavaged through her feeding tube.

We introduced my skimmed breast milk at the end of August, first mixing it 50/50 with her special formula. It was a disaster. She fussed, wouldn't drink much and by the 10pm feeding, was screaming. It was awful. All the nurses were saying, 'I've never seen a baby not prefer mom's milk...'. That doesn't help! By the next morning, one of our primary nurses suggested we try the skimmed breast milk on it's own and thankfully, she took it no problem. She just didn't like the taste of the two mixed together. Ah! The skimmed breast milk obviously has the fat removed which means it doesn't have as much nutritional value as she needs, so it needs to be fortified with the monogen formula. Since she wasn't taking it that way, they had to get creative, so they switched to skimmed breast milk with mct oil for half of the feeds and the other half were the monogen formula that was concentrated to be more caloric. That was going fine and she continued to increase her volume on feeds but still wasn't getting to her daily goal, so she was still being gavaged the remaining.

On the Friday before we started the skimmed breast milk we sat down with a room full of doctors (several neonatogists, the dietician, the pulmonologist, the pharmacist and the GI specialist, as well as the social worker). As opposed to previous visits with such a large team, this was to discuss what Colette needed to do in order to go home, and what it would look like at home. This was all pending her acceptance of the skimmed breast milk, so luckily, even though it took several days to figure out, it appeared she would take the skimmed milk, and that her body could tolerate it (there was a tiny risk that even the slight fat that was left after skimming the milk could lead to fluid reaccumulation). Things seemed to be progressing and we were finally within a week or two of taking her home. I still wasn't ready to tell people because I couldn't quite believe it myself. I did start planning the party for the hospital and rushed around to get things finished in her room.

A week after our meeting with the doctors and week of the skimmed breast milk, the doctor decided to pull her feeding tube -- a sort of tough love or sink-or-swim approach, hoping that if she wasn't being topped off through her tube, she'd get hungry enough and be able to eat the full volume. She did fine and I think she increased a bit but still wasn't getting to her full feeds. At this point they gave us a tentative discharge date... either Wednesday or Thursday of that week. Dave had a huge meeting he could not miss on Thursday so I figured it would be Thursday. She was gaining weight, slowly, most days, but there were a few days when she lost weight, especially as we neared the discharge date. Ultimately, the doctor said there's nothing they would do differently that I couldn't do at home, so we did get to take her home on Wednesday. It was a chaotic day with so much going on, talking to so many people, emotions were high and it was surreal when we finally took her outside. Again, more to come on that day... whenever I find time to write it!

She's done well at home over the past two weeks. She's generally a happy baby, she sleeps well at night, fussy a bit when she's hungry, but her paci suffices while I warm up her bottle. Thankfully, she goes right back to sleep. We discussed hiring a night nanny again, and if you asked me a month ago, I thought for sure we would hire someone as we'd be too nervous to sleep, but really, by the time we left the hospital, she really was like a normal baby, that while yes, anything could happen, I feel very comfortable with her at home. We weren't sure what the set-up would be, my friend loaned us a bassinet I set up in our room, and then we have a twin bed in her room. I've found it's easiest to sleep in with her, mostly just because I have her bouncer seat and my pump set up there and I pump every time I feed her. It is nice that she's a pretty sound sleeper so her sounds wouldn't keep me up, yet I'd be able to be right there for any cough or anything else that could be worrying. I love how we have her room set up, which is good, as I'm spending a lot of time in it right now. Another post to eventually come on that :)

Our biggest struggle has been feeding. Oddly, it's not the same struggle we had with William in the beginning, where he would latch on and then after a minute or two of eating, he'd pull back, cry, fuss, and it was just awful trying to give him a bottle (we never did figure out the problem, it wasn't reflux, but it did resolve around 4 months). Colette generally goes on when she's hungry and eats for a while before needing to stop for a burp, and then will often go back on for a bit more. She usually eats about 15 minutes max, and then starts fussing when I offer the bottle again. Oftentimes it's not even fussing, she's just turning her head, pushing the bottle away either with her hands or her tongue or she'll let the nipple sit in her mouth but won't suck. This wouldn't be a problem except for the fact that her weight gain has been very very slow since she's been home, only gaining about 4oz in 2 weeks. I had really been pushing the volume as I knew she wasn't meeting her daily intake goal (but was doing about 80% of it pretty consistently), but after getting to know her patterns a bit more, as well as talking to various doctors and a visit to the feeding clinic, she has no feeding issue, though there is a volume issue. She eats when she's hungry until she's done, which would be great except that because of her special diet, she's not getting enough calories in that volume. A week ago, the GI specialist bumped up her formula concentration again but after 4 days, she had barely gained anything so now we've gone from 50% skimmed breast milk feeds and 50% monogen formula feeds to 25% breast milk and 75% formula. We've just started that and we go to the doctor on Monday so I'm praying that that makes a difference. Over the past few days, she's has been doing much better on her volume as well so hopefully that helps. It's so frustrating though, when some feeds she only takes 2oz and is clearly done when I know that's not going to be enough to get her to her daily goal. Obviously I also worry about the weight gain, as well as the possibility (though we're not close to that yet) of her getting an ng tube down her nose again so she can be gavaged for several feeds to make sure she's taking more in. I really hope we don't need to do that, especially since she seems to be self-regulating what she's hungry for, so I hope they can sort out the right recipe for her diet while she still gets some skimmed breast milk. But again, the last few days she seems to be finishing many more bottles and getting close to, or reaching, her daily intake goal so I'm hoping things have clicked.

Sleep-wise, she does well at night, going right back to sleep. Some nights she wakes every three hours, fusses a bit and is sometimes already back asleep by the time the bottle is warmed up. Sometimes she'll still eat, other times she won't eat much at all. Generally I need to keep waking her up while she's eating at night though. There are other nights when she sleeps longer, as long as 5 hours, which is great, but unfortunately she's not eating any more when she goes that long. It would be such a bummer to have to start waking her up and training her to eat during the night when her body seems to be wanting to sleep at night and not eat as much (what we want!). Of course that would require her eating more during the day which seems impossible at this point. Naps are good if we're out, or if I'm holding her, but are often very short when she's put in her crib. That's a transition that I'm not concerned with pushing quite yet, but that obviously limits the time I have to do stuff without holding her. I'll take it!

There were many days throughout this process when I asked myself, 'how did this happen to us?'. Today, I continue to ask myself the same thing. How are we the lucky ones? How did we get a miracle when so many others don't? She came out of this better than anyone could have hoped and I feel beyond blessed. Not only that, I feel like I got everything I could've wanted -- she's able to have my (skimmed) milk, something that felt like such a remote possibility before. She's home on no oxygen support. She didn't have to be moved to the PICU, which was brought up multiple times towards the end. We even got to have the celebration I dreamed of with all the nurses we grew so close to. That all was just icing on a perfect, wonderful little cake.

Colette will continue to be followed by GI (mostly for managing her diet but they also run labs to check her vitamin levels, bilirubin, etc.), pulmonary (for breathing and her condition specifically) and by her pediatrician. At least for now, they're staggering these appointments to she's seen (and her weight is checked) by someone each week. We're also taking advantage of the feeding clinic and physical therapy, both of which the therapists in the NICU told me they were giving us a referral 'just because' in case we wanted to go, but there was nothing specifically required. Developmentally, Colette is on track for her adjusted age (7 weeks behind her chronological age). She's quite interactive, tracks, smiles a lot, coos. She still doesn't have great head control so we're trying to do as much tummy time as possible. She also has a pretty flat head which is so common for NICU babies, but the pediatrician is confident it will resolve itself since her ears are still aligned. She came home on four different vitamin supplements and is already down to just two of them. She's on no medicines.

I'm enjoying settling in to having all three kids together. It's a lot of work, but it's so nice to all be at home. The boys, William in particular, absolutely love her and have adjusted so well to her being here. I think their hardest adjustment was when I was in the hospital on bedrest so not all that much changed with her physically being here. If anything, I'm home more so they like that. I need to be so careful about where I take Colette and need to avoid anywhere that's crowded. I've been told that includes grocery stores, but I've had luck wearing her facing in and then covering her with a blanket. Otherwise we're meeting up with people for a walk and I went to a new mom's meet up last week and she was able to sleep in the stroller the whole time.

So this is it, our new life. The first few days home definitely felt surreal, but already things seem normal again. I still can't get over how 'normal' she is. She really is an easy-going baby, fussing when she's tired or hungry and only occasionally gets really upset when something like gas (or being really hungry and waiting for a bottle to be warmed) is bothering her. She hates tummy time but I'm trying my best to build up her short practices here and there to strengthen her neck and get her off the back of her head. She's a smart girl and does this sly grin at times like when I keep trying to feed her a bottle she's clearly done with... she'll let the nipple rest in her mouth, won't suck and then will give me this side smile. She's losing hair quickly (as is mom) but doesn't seem to be bothered by hair bows which I still find amazing -- with all the various head gear she's had on, you think she'd be bothered... or comforted. Who knows.

Colette, my Coco-Bean. This was a strange post to write as it has two such different parts. Your life in the NICU, the only life you knew and the only life I knew with you, finally came to a close and you graduated! There were obviously points back in June and July when we thought this day would not come. As you started getting better, I became more optimistic and then I just had to be patient. It was so much easier to be patient when I could finally see the light at the end of the tunnel. Although you probably made the most progress during the time covered in last month's post, you closed the gap over the last month and shut the door on a lot of unknowns -- would you need any additional breathing support? Would you need a g-tube? I couldn't possibly picture what life would be like at home. But as you kept trekking along and continued to do well on the bottle, I remember thinking to myself, 'she's gonna do this. She's really gonna do this'. In talking to the nurses and reading their sweet messages to you in the Oh the Places You'll Go book I left for them to sign, multiple people referenced how 'love' saved you. Who knows, I would like to think that all the time Dad, Dedee and I spent with you helped you heal, but I'm not taking credit for that. You touched so many people in the NICU, and had so many people looking out for you. Even beyond our circle of friends and family, I know there are many people I've never met who were constantly praying for you. Do I think this made a difference? Certainly. I don't think you'll ever know how strong you are and all you've overcome and I'm not sure how much or when we'll share that with you. I can't wait to tell you how many people love you and how many lives you've impacted by being the fighter you are. You are so loved and now I feel spoiled to be able to do all the things I dreamed of being able to do with 'just one'. I remember NICU nurses telling me that one day in the future, our NICU stay would be a blip on the radar. At the time, that was so impossible to fathom. On the one hand, it was such an intense experience for quite a long period of time, that it will always stick with us. On the other hand, here we are, 2.5 weeks into the next chapter with you, life at home, and already it feels like a different lifetime. So here's to living up the remainder of the sleepy newborn days (which you're quickly outgrowing) with Baby and Me movie dates, long naps for you in my arms and as much holding as you want. You've had a heck of a ride girl, and at least for now I want you to get everything your heart desires.

We brought Colette home on a Wednesday and decided to keep her homecoming a secret since Dave's mom was coming for a visit that Friday and we wanted to surprise her in person. What a treat! Here's a note from Ma:

To Colette, William and George

Aunt Lori and I were so excited to come to San Francisco to see you but our biggest surprise was that Colette was HOME!   We were so happy to see that little bundle in Lauren’s arms with her dark curls and cute little orange leggings.  Oh how happy Ma was to hold you Colette, and smell those sweet baby smells.  You even had a few big smiles for us!  You are such a beautiful, even tempered, sweet baby girl.  Definitely worth the wait as the banner says in your room.  It was so nice to be able to meet you in person - tube free-  and share some time with you before the boys came home. 

Speaking of the boys, I was so surprised to see you in the back of Jessica’s car when I was on my way to lunch with Aunt Lori and Daddy.  You both had big smiles and we promised to see you after quiet time.

We had great adventures at the parks, riding the boats, going on the Carousel, riding your scooters and bikes, grilling and playing in the back yard. Aunt Lori brought that funny Slap Face game….everyone got a little whipped cream on their face and we laughed and laughed!  Aunt Lori and I thought daddy’s new bike was really cool!  With your helmets and scarves you were ready to go home after pizza and ice cream.  Hold on tight, that bike goes fast!

Colette…you are a beautiful princess and a little miracle.  I saw you when you were born…so little and helpless in the NICU unit.  I couldn’t even touch you but I did see you open your big eyes and I know you heard my voice.  I’m so happy you are healthy and happy now.  I cannot even tell you how sweet it was to hold you in my arms and give you a bottle.  I am so happy you were home and smiling and kicking and enjoying your family.  I sure did enjoy my time with you and can’t tell you how much I loved being with you.  You are a little angel, Colette. 
Ma loves you!

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