W&G 39 Months

This popped up on my facebook feed today. Can't believe that 3 years ago at this time, the boys were about the age Colette is now. It's so fun to see this picture and how revealing of their personalities it was, even at just 3 months old.

It's been another month of ups and downs, one week in particular where Dave and I were at the hospital even more than normal. I worried about the boys, and noticed George was having more accidents, but when I talked to the director at preschool, she told me she'd never know, they were doing great at school. Such a relief. George's potty regression seems to have straightened out again. They both went through a phase where they said they didn't want to go to school, and even had some tough drop offs, but now they do well. The director told me she 'adores' them and that they're the best helpers at school -- both with clean up (and apparently actually following through which a lot of the kids don't do) and also setting out snack. They still always ask if it's a day they can stay home, but I think mostly they ask if Dave has to go to work because they don't want him to, and it would mean they could stay home with him. Next week is their last week of Calvary until they officially start school in early September. It's been a great way to acclimate them to both the routine, as well as the teachers, school, etc.

Weekends have varied. Whereas we were trying to do things as a family as we both feel that's important to maintain some normalcy for the boys, when things got tough with Colette, we were really just taking shifts and switching between being with the boys and being at the hospital. Dave is good about taking them on adventures. He's been taking them to church on Sundays and they recently went to do the paddle boats at Stowe Lake too, which they continue to talk about. Dave is really good about being present with the boys. For me, if Colette's not doing well, I really want to be with her as much as possible. Both of us are at home for dinner and bedtime as much as possible, which turns out to be most nights. It's been nice to have meals delivered so that whatever time we can be home, is time we can spend with them. We had a fun adventure as a family last weekend and went to an outdoor pool in Novoto where it's warmer than the city. They had a great kids pool which had a water slide that went into a foot or so of water. Perfect for the boys to play and 'swim' in on their own -- Dave and I could lay out and just watch them!

They've continued to do well in their new room, thankfully. Occasionally they'll talk about being scared, but it makes such a difference that they're down there together. Bedtime has gone very smoothly as a whole, and a big part of that is that they've dropped their nap. Quiet time, miraculously, has gone well. We have a box (formerly the box of airplane/travel toys) filled with magnetic boards, puzzles, coloring books, water coloring books, little puppets, little animals, etc. and they can choose three items each to use during quiet time. This stuff isn't used otherwise. After a full month of quiet time, apparently they're still not bored with the selection but I'm sure I'll have to refresh it sooner or later. The main trick is that they can't be in the same room, that definitely doesn't work. What has worked is switching off between their bedroom and the couch just outside in the playroom. It started by George getting mad that he never got to be in his bed (because W was more likely to nap), but even switching back and forth, both have done well. Many days they both end up napping too, and we try to keep it to an hour max. Waking them up is never fun, but honestly, even when they were taking naps, getting them up was always hard. I think this is working best as bedtime is so much easier, plus, they feel more in control of whether they nap or not. It seems like 45 minutes to an hour is just enough to take off the edge but not keep them up for a later bedtime.

Dave has been doing a boxing class in the mornings, which means that I now get up with them, which has worked out well. I set my alarm for 6:30 in order to take a quick shower and pump before they come upstairs at 6:50 when their sun clock comes on. Usually they play in my room while I finish getting ready. They eat breakfast and end up playing upstairs for a bit before we get ready and get to school by 8:45. It's been the perfect amount of time, I usually don't feel rushed, yet can still get on with my day and to the hospital a little after 9am. As Colette has become more stable, I've started adding workouts back into the schedule and I've been doing pilates classes some mornings at 9am. On days there isn't a class, I try to swim right before dinner. It feels good to get some exercise though I definitely have no ab strength whatsoever so have been pretty sore.

Since Dave isn't here in the mornings, we've been able to easily cut out shows. We've bumped up dinner to 5:45 and then Dave bathes them and gets them ready for bed while they watch a show. I take over for books at 7pm and am usually out of their room at 7:30. Many nights they're asleep shortly later.

I had to revisit our food plan for them again this month. We've been so grateful for the meal deliveries for us but have asked just for food for us, not to worry about the boys as they don't really eat much anyway, it's not worth people attempting to find something for them. Anyway, it was getting to be slim pickings from the freezer and I know Jessica was running out of options so I've put together a go-to list for their dinners. They really do best with meat. George especially will eat at least a full pork chop or steak. William will eat pasta (G won't) so that's a nice back up. I've come up with a few other ideas of things we can have in the freezer to heat up for them. It's been nice to have Jessica looking out for them too. She makes smoothies with tons of vegetables, and popsicles too. It will be nice to eventually get back to home cooking -- almost all of the meals we're getting are munchery or other take out. Once I'm cooking more, we'll go back to the 'this is what's for dinner, eat it or don't' approach but for now we're still in survival mode.

Play: This is my absolute favorite part. They're using toys less and less right now, and usually as a prop for an imaginary game. Magnatiles still get a fair bit of use too, but W turned the little magnatile trains into roller skates the other day!

It's so much fun to hear everything they come up with. George is still obsessed with playing garbage and usually gets W to join in. 'Garbage' consists of putting on their gloves and collecting books, pillows, etc. to put in their garbage truck. They also constantly play with the little white chairs, turning them upside down and sitting on them, pretending they're a garbage truck or a digger. Or today they were pushing them around, calling them 'cutter dutters', who knows what that it. This is a common scene:

They've stopped using their boosters at the table, but like to use them for playing. This was them in their fire truck. 

Dr. McDowell
They also love driving their little red cars around the backyard and Dedee put parking spaces in with tape. George always reminds people to 'curb your wheels, otherwise you'll get a ticket!'. Not sure where he gets all this from!

To my boys:
You've grown up so much this month. Both of you (not just George) are enthusiastic about getting yourself dressed and have made a lot of progress. You can pick out your underwear and put it on, along with your pants. The shirt is still a bit challenging but you're getting there, and I'm so impressed that you get your socks on pretty well on your own too. Occasionally I get you to 'make your bed' meaning pull your comforter up. You talk about being 3 years old so much that I use that to my advantage and say, 'three year olds ...' (brush their own teeth, etc.). Speaking of which, you're now responsible for getting out your toothbrush, putting on the toothpaste and brushing your teeth in the morning. It's weird to not be spending as much time with you as I'm used to, but our mornings have been pretty nice actually. I love to overhear you come up with your new games and play so well together (though there are definitely fights too). It was so special to see you meet your sister for the first time, even though it was a quick visit that ended in G saying, 'I'm ready to do something else' after about 3 minutes :) You both ask about going to see her again, and reading a book to her, which hopefully you can do next time. We've been talking a lot more about God lately and saying our prayers asking God to make Colette better. Lots of questions have come up surrounding God and I try to answer the best I can.

W&G notes:
  • You told me there were two little potties at school so you could poop together, but that a little girl had walked in and said it was stinky
  • You got to meet Gerald from Gerald and Piggy at the bookstore and you both gave him a hug. Jessica got a video and it's the cutest thing, you're holding on to each other slowly approach him for a hug.
  • You're doing so many paintings at school and we still need to figure out how to manage all of them when they come home. Most days you come home covered in paint but luckily most of it comes out.
  • You love dancing to the music at the end of your shows
  • You had so much fun at Uncle Jon's house building a fort and making ice cream
  • You like to have flashlights at bedtime now
  • You loved wearing belts to church and want to wear them every day but that's probably not fair to your teachers at school since you need a lot more help with getting your pants down then
  • You like to call your milk cups 'coffee' and even at the birthday party you held up your cups of water and said, 'this is my wine!'. Got some giggles from the other parents.

George. You are still so obsessed with playing 'garbage', it's pretty funny. Often you get William to play with you, but even if not, you'll go about your business dumping everything you can find into your truck (usually under the kitchen table). You get super excited about using 'real' garbage like the packaging the comes inside our delivery boxes and ask if you can keep it. Even when Ma sent you cards a few days ago, you asked if you could keep your yellow envelope for your garbage. Whatever works! You've had several inconsolable moments this month that are just hilarious to be a part of. I've started keeping track of why you were so upset... we read W's book first at bedtime... W flushed your poop... Dad brought in the trash cans... we wouldn't let you throw away your pull-up in the unused diaper pail in your old room...

Other G notes:
  • You were so upset that your black converse don't fit anymore and are now William's. You begged me to go buy new ones, which I didn't.
  • Asked why we have bones and if God makes our bones
  • 'I'm not gonna drink wine when I'm an adult because wine is made of grapes and I don't like grapes'
  • You talked about how when you were in my tummy, you would push the salad back out because you don't like salad (in reference to the food I ate going to the baby)
  • You were disappointed that a birthday party you went to only had sausage pizza and not pepperoni
  • You always repeat a version of what I've told you, that you'll go live with God if you drink the dishwasher soap (since you've started pouring the soap for me before starting the dishwasher)
  • You were really creative and built a wheelchair ramp off of one of your magnatile vehicles
  • You loved the rules sign at the pool

William. You were so sweet when you met your sister, much more interested than George. You ask questions about her a lot, or talk about her in general. I know you'll be the best big brother and I hope you'll get to hold her some day soon. With the talk of your sister, it usually leads to talking about praying to God to help her feel better. You've especially had a lot of questions about God. You've adjusted much better to school and I'm so impressed to hear that you're such a good helper at school along with George, since you tend to be a bit lazy at home ;) I think part of it is that it sounds like you and George stick pretty close together at school (just from what you tell me, I haven't asked the teachers). You guys do keep referencing a friend Edward who you don't like because he always takes your mail (apparently you play mailman).

W notes:
  • We saw a billboard with a cat on it and you asked if Dad was allergic to cats and I said yes. Then you said that you would get a cat to sleep on your bed and when sun clock came on in the morning, you shut the cat in the room and come upstairs on your own (presumably so Dad never had to go in your room).
  • You said your poop looked like a 'log pile house'
  • You've been calling everything 'beautiful'. "I want to wear that beautiful green shirt"
  • You built a really cool moon buggy out of duplos
  • At one point we referenced God being up in the sky and you said, 'like a bird?'

Trying on your sister's headbands

Baby Colette, Two Months Old

Here we are, another month in and wow, it's been filled with ups and downs. Anyone who's familiar with the NICU will attest to the experience being like a roller coaster and I'd have to agree. Reading last month's post, we were in a pretty good place. Yes, progress had been slow, but it was generally moving forward. The past month there were some huge setbacks -- days that took us all the way back to her status during her first week of life -- not to mention getting the news that there may be an underlying (and very serious) issue with her lungs that takes what's she's dealing with to a whole new level. The bad days are so incredibly hard. There have definitely been days this month when I wonder how she even has a possibility of ever coming home, I've seen her so sick. The good days are so good, and I convince myself of the opposite. How can she not come home?? The good days are hard too as I see her beginning to interact with me more, more alert and awake, making progress, and of course I'm becoming more and more attached, but then let my mind wander to the fact that she still may not come home, and it just seems cruel.

I need to be thankful that currently we're in a fairly good place. She's had a great week. I could see her feeling better from about last Sunday on, it did take her a few days to recover from the biopsy but each day she improved. The beginning of the week she was really alert, they were able to wean her medications more and Tuesday was a great day, she was taken off the ventilator and is now on CPAP and doing very well. She's been on 'room air' at 21% oxygen, or just slightly higher, even with them weaning on some of the settings, all week long. We've gotten to hold her a lot again. The right chest tube is out and fluid doesn't seem to be reaccumulating and the left is producing next to nothing. She's been tolerating continuous feeds of the special Monogen formula and they're increasing those daily getting her closer to 'full feeds'. These are all great signs.

Unfortunately we still have the biopsy results hanging over us, and though the outcome won't change  the treatment, I think it will give us a better idea of what we're dealing with, the likelihood that she'll ever leave the hospital and if so, what her future may be like. We should find out this week. Oddly, it's been easy to live in the moment and not be on edge waiting for the results. I think it helps that she's made huge strides since we got the results of the CT scan showing the lung issues so it justifies having hope that everything may somehow work out. I really should be keeping a daily or at least weekly journal though since the range of emotions through all of this is so wide. If I had written this post 2 weeks ago, everything would sound much different.

Though she's doing well, one of her main challenges at the moment is being weaned off morphine. I've developed thicker skin over the past two months and whereas at one point her being stuck multiple times for an IV would've put me over the edge, I now calmly ask how many tries it took, and move on. Despite this, it's pretty upsetting to see your baby have tremors due to withdrawal from the morphine. They're monitoring it closely and luckily she responds well to firm containment so we're hoping things will settle down in the next day or two. I'm so grateful for the nurses who are willing to spend their time finding ways to comfort her through touch and not just another bolus of pain medicine. She responds well to containment, hand-holding, a head massage and patting. Colette is a high maintenance patient (in fact, she gets her own nurse, whereas most nurses handle two babies at a time) so I appreciate those who stay late charting because they were busy calming her throughout the shift.

This month:
June 18 - oxygen needs increasing, fluid reaccumulating on the right, so chest tube back in
June 24 - oxygen needs increasing again, fluid reaccumulating, readjusted chest tubes, put on non-invasive CPAP
June 27 - oxygen needs spiked to 100%, reintubated
June 29 - CT scan
June 30 - CT scan results not good
July 1 - Colette baptized, left chest tube again
July 4 - new norm of 50-60% oxygen
July 7 - lung biopsy
July 9 - oxygen still at 50-60%
July 10 - chest tube replaced, oxygen starting to go down
July 12 - extubated, on CPAP,
July 13 - octreotide started, weaning off of morphine
July 15 - boys came to meet her
July 17 - oxygen has been in the low 20s all week

It's been a better month in terms of consistency of care. She has several 'primary' nurses. Thomas, a French nurse who is with her during the day shift every Saturday and Sunday, Ashley, who I've only met once or twice only works the night shift (11:30pm-8am) and Elizabeth, who is often in charge so we still don't have her too frequently, but she's a very experienced, young, calming nurse. Jo is another one of my favorites, she loves to chat which is great as she's on the day shift so I always love when she's there. I've been there when she's called on her day off to check on Colette. There are many others too, and I feel like I know most of the nurses in there. In general, I feel lucky we've gotten some of the same nurses again and again, which is great for Colette since she has so many unique things going on. When she has a nurse for the first time, they often default to me when it comes to her preferences, transferring her to be held, etc. I've had different nurses come up to me and tell me how attached to her they're getting, but the last week has been so much happier. Everyone's coming by her isolette because they heard how well she's doing. Such a change from several weeks ago. You know things are bad when Jo asks if she can bring in an angel to hang on her crib, or when all the nurses are generally just more sympathetic. You never want to hear, 'there's no diagnosis we're hoping for' (regarding the biopsy) or 'there's no way to spin this but extremely worrisome' or 'this makes us very concerned', all of which we heard. We've also heard over and over again how strong she is, how feisty and in several heart-to-heart conversations with different nurses, they've cautiously reassured me that with all their experience, they can usually tell which babies are going to fight to be here and she definitely has that fight.

We just finished another doctor rotation and Dr. Slagle was amazing. She partly lucked out that Colette had a good two weeks when she was on, but she comes around beaming when she sees how she's doing. When I'm there all day, she stops by multiple times a day to chat and fill me in. She's cautious, as she says, 'Colette has burned us before', so she knows not to be too optimistic in her progress because we're never sure what she'll throw at us next. You start to get attached to the doctors and are bummed when their 2-week shift is over and you have to move on to the next doctor (though they're all sort of around so it's not like they're gone for good). Each doctor has their own approach and I did like that Dr. Slagle was invested in me, our family and everyone's well-being and not just listing off items on Colette's to-do list for that day.

It's amazing what becomes the norm when your a NICU mom. I was chatting with two other moms in the pump room the other day and we were talking about surgeries our babies had, or were going to have. Like it was no big deal. No tears, no emotion, just logistics. Now that certainly doesn't mean there isn't emotion, on the toughest days, I can fall apart any moment, but some of the conversations Dave and I had and what we could discuss matter-of-factly is pretty crazy. But I've learned it's all relative. In the early days, when she was expected to recover and that we just had to be patient, I felt so sad that I was 'missing out' on the whole newborn experience and how hard it was going to be to wait until July or early August to bring her home. How would we ever do it?? Then I was devastated that she may never be able to have my milk and how awful it would be to pump all this milk for no reason (I'd donate it at least though). These emotions are all totally valid but wow, how things have changed. We've been doing this for over 60 days (and even more when factoring in getting the hydrops diagnosis, hospital bed rest etc.) and if it means she would come home, I could handle 60 more.

Hospital bedrest and missing out on a 'normal' pregnancy? Fine.
Having a preemie? Okay.
Miss out on a 'normal' delivery and postpartum stay with my baby in the room with me? Over it.
Lose the newborn days at home, essentially miss out on her first however-many months? Fine.
Get over the chance at breastfeeding (one of the things I was most looking forward to with 'just one' as I dreamed of how easy it would be to feed anywhere, etc... not that it's always easy). Done.
Pump every 3-4 hours for months. Give up on breast milk despite a freezer-full of milk. No problem.
Months in the NICU. I can handle that.
Lifelong oxygen support. We'll make it work.

It truly is relative. We pray that if there's a way she can have a happy and relatively healthy life, then to let her come home and we'll figure the rest out.

It's almost a bit comical (and hey, we can laugh about it!)... Colette has really taken over a corner of the NICU. It probably helps that she has someone visiting most of the day, but with all the doctors and nurses needed to care for her, space-wise, she keep inching up on Antonio's area. I was a bit taken aback when I walked in on Monday to see her 'tree' of pumps. Before she just had one 'branch' I guess you could call it and a few pumps on the counter. I guess they decided to consolidate but it was still overwhelming. And for some perspective, most babies (if they even have a pump), have the orange one which is for milk feedings through a tube...

This is also totally ridiculous, but again, I oddly joke about it. She has so many lines and different medications going into her body that her sweet nurse Elizabeth decided it would be easier to have a visual for each nurse coming on to figure out what is going into which IV. Whatever works.

Colette. My sweet girl. It was odd that you never felt small to me, even on the day you were born. You were bigger than either of your brothers (even if a pound or two of that happened to be fluid...). And despite you having little food over the past two months and mostly being on a TPN cocktail, you're growing well and seem so big for your small isolette. You're probably still the only baby in the NICU who the doctors are hoping will lose weight... definitely not a common thing around those parts. It's so nice to see some of that edema finally coming off. You still have a neck roll, but it's no longer puffy from fluid. Your face is full, but not as puffy as before either. Though they're still using a dry weight of a little less than 9lbs, your true weight is closer to 10lbs now. We're trying to spruce up your isolette and have started using some of your swaddle blankets for sheets. I've tried putting headbands on several times, but they don't stay on great, and honestly, it's not a priority for the nurses to keep them in place with all the fussing they have to do as it is. Now that you're on CPAP again (yay!), you have that stylish headgear so headbands will have to wait. You've taken us on quite the ride this month and we're still not sure where the road will end. Dad described it best, you are strong, but also fragile. It was a much-needed treat to have you so interactive and alert this week. You love looking at your mobile -- the Child Life specialist suggested putting some photos of us on the pieces that hang down and you really do love looking at all of us. Despite the last couple days being a bit tough with your withdrawals, it was so nice to see you feeling more comfortable after recovering from the surgery. It's odd to explain, but everyone, including me, could tell you were feeling better. I loved to see you grabbing at rings I brought in. And being able to hold you for hours on end has been so great after our hiatus while you were on the ventilator again. You're so much like your brother William, of course you look just like him, but I think you're becoming quite accustomed to having a staff to care for you. You're definitely the most high maintenance baby in your part of the NICU. Most of the babies are just there to feed and grow and thus their isolettes are closed and covered for almost all of the day and night. Yours is always open, both because you were bigger and never had an issue regulating your temperature, but also because you have so much going on, nurses and doctors need easy access. It requires a minimum of three people for me to take you out of your isolette to be held, but I have to say, I have it down pretty well. And it's not easy with so many wires and cords hanging off of you. Despite the pain that is transferring you, it's so good for both you and me. You do pretty well for the most part, despite having a mask and long tube coming off of your head at all times. Usually you'll snuggle in and I've even been able to read several books while holding you. You're lucky you got one of the few moms who has to pee very infrequently. The nurses are always surprised when I say I plan on holding you for 3.5 hours or longer... 'have you eaten? have you gone to the bathroom??' I could hold you forever if I didn't need to get up to pump. You have already transformed your dad and I. I think we're stronger, both as a pair and as individuals, by this experience. It makes me so sad that you have to go through all this, but your strength over the last week has given new hope that if anyone can get through this, you, and we, can. Last month, while frustrated that you hadn't progressed further, I was excited to see where you'd be this month. I wouldn't consider myself a patient person at all, but I now feel like I can continue to take it one day at a time. I won't dream about where you'll be at this time next month. I've learned to forget all expectations. I celebrate the progress, cautiously, but await the set backs, as I know they will continue to come. I remember I wrote a blog post a while ago, before you were here, about 'one step forward, two steps back' and Dave corrected me, saying it's 'two steps forward, one step back'. In the NICU, I've talked to other nurses and they say the phrase the same way I do, which initially was a mistake, is unfortunately how it often goes in the NICU, you make a tiny bit of progress, but then are backed up again and again. Those feelings of intense impatience I had right after you were born... 'how will we ever make it 6 weeks, or 8 weeks, or longer?' are gone. If we're lucky enough for you to come home with us, I know it will happen when it happens. You still are so far from that that there's no reason to get caught up with the overwhelming amount of progress you still need to make. Nurses continue to be impressed with your strength again and again -- you often need 3 or 4 nurses to contain you when they're doing something you don't like -- but I know that's a very good quality to have for a sick preemie. Today you're two months old, you've spent 62 days in the NICU with no end in sight. As we await your biopsy results, we know whatever happens, we're soaking in every inch of progress you're making and ready for whatever the future holds. You have so many people -- people we don't even know -- holding you up in prayer. You are so loved!