Home Sweet Home

Eliza is finally home with us! 162 days after her birth, she was finally deemed ready to make her escape from the hospital and set out into the wider world for new adventures. We're deliriously happy that she is home!

All ready to go home...

... But first, got to catch some Z's!

Riding in her car seat in our car. There were times we thought this day would never come!

Eliza came home on a home apnea monitor and surprisingly it has been amazingly helpful for keeping us all sane through the transition from the hospital environment to home. This is especially true for Eliza's sanity since it saves her from being poked by her parents every few minutes to be sure she's still breathing. She was even able to try out her crib in her room last night! She seems to be a fan of the decreased noise and light, because besides some reflux, she slept great! We're doing our best to enjoy it while it lasts - soon the honeymoon will be over, no doubt!

Between the apnea monitor and Eliza's NG tube, we ended up bringing home a lot more medical supplies of one sort or another than we had been expecting. Leads, tubes, and syringes oh my! We're glad Eliza's nurses were so helpful in making sure we had everything we need to take care of her at home - we can't imagine trying to find and figure out all of this stuff on our own!

We've covered a lot of baby care firsts (or rather, first time at home on our own, since we did so much at the hospital already). First diaper change, first poopy diaper mess, first feeding, first bleary-eyed stumble across the hall to check on her, first morning of not having to drive to the hospital to see her, first early morning family cuddle, first visit to the pediatrician, first call to the ICN fellow and favorite NNP with a questions about Eliza (who is with us, not them!)...we are looking forward to so many more firsts in the next days, weeks, years. :)

Heather's family sent Eliza a BIG welcome sign!

Entering the house for the first time - welcome home Eliza!

Little baby, big crib

Oh how times are a changing! :)

5 Months Old

On February 8th Eliza turned 5 months, or as they say Day of Life one hundred and fifty two! She's accomplished A LOT of growing in the last month. She's now up to 6lbs 5ounces and rapidly getting too big for her preemie clothes! The true test of her growing has been since her last surgery - whether her digestive tract would get it together enough to let her absorb enough calories since she wasn't able to do this before. And the answer is a definite yes! She's been averaging about an ounce a day! :)

Daddy's little girl.

Practicing tummy time on Mom. 

Family portrait before Eliza's surgery.

My favorite thing - a nap on anyone's shoulder!

Deciding to try and eat a finger since everyone seems to be slow on the bottles around here! Can you see the beginnings of fuzz on my head??

Catching a nap wearing mom's favorite hat! 

About 10 mins before having to get the NG tube put back in :(... looking like a porcelain doll. 

Crossed over the line to CRAZY

This week has been one of the WORST weeks yet, at least emotionally. Why? I couldn't really explain it. Besides the feeding problems of late Eliza's doing pretty damn well-thank-you-very-much! What does suck? Tomorrow we wave bye to yet another day that we were supposed to be leaving with baby in arms. Right now there are no new going home dates being planned -  no more arbitrary dates that only break our hearts when they fall through. We will know she is going home when we put her in her carseat and walk out the door. This is what we had previously expected based on other NICU families that we've watched, but for some reason there kept being a planned date for Eliza that was "the day," even if we were careening towards it not sure if everything was quite right. None-the-less I'm done with that nonsense now. I'll believe it when I see it.

It's been many days of stressing and trying to interpret what is happening with Eliza. I have felt all sorts of pressure to try to determine if she was "good enough" to come home or just not quite there yet. Thankfully everyone finally got on the same page today, and although the answer we came up with is "not quite yet", with the collaborative help of the experts we have a plan to help Eliza get to the point she needs to be at. She is back on an NG tube (a tube that goes down her nose to her stomach). Any food she gets too tired or frustrated to eat by bottle will go through the NG tube. Hopefully this will "build a bridge" to get her to the side of being a stronger, less frustrated, more successful baby. This means more time in the hospital for now, but by doing so we are hoping that once she gets out of the hospital she can stay out!

My take home skill from the last several days? Learning how to talk THROUGH the tears. Thats right, I've always had problems with actually being able to say anything comprehensible while crying. I think I've worked right through that and embraced the shakiness. Add that to the list of new mama skills. The CRAZY Cryer-talker! Hooray!

Eliza's Space

I think Eliza's room is as together as it's going to get! Fortunately we had most of it done early on since I was expecting to be on bed rest for a while. We had fun making and repurposing stuff for her room. She obviously doesn't care but I think it makes it even more special for us.

My mom and aunt made the bedding and curtain that I love - I just picked out the material. See the chest freezer in the corner? It's Eliza's milk conveniently (or not so conveniently!) located. ;) 

Monogram I made for Eliza from buttons I gathered from my mom and mother in law.

Bookshelf with miscellaneous items from my childhood, and toys and stuffed animals that her nurses have given her over the months. 

 

Glenn's previously well worn chest that we painted and put new hardware on to be the dresser and changing table for baby.

The picture frame hanging on the wall is Eliza's picture, footprint and hand print that we took on her due date, December 27th. We wanted to have something to remember that day by.

The embroidered Noah's Ark that was in my nursery and before that in my cousins'. The vase on the left is filled with washcloth lollipops that were made for the baby shower I didn't get to attend! The blocks on the right of the shelf are for each of the triplets. In memory of Oliver and Charlotte, and in honor of Eliza. 

Glenn bought these carnival masks for the triplets in Las Vegas when we first found out we were expecting. They are mini versions of the full- sized ones we have in our living room.

I could post more but since my computer is taking ages tonight I will leave it at that. Now we are just waiting to move baby in! :) 

Eliza update

So far, two of the ideas about what's happening with Eliza have turned out to be significant, and we've ruled out two others. Still waiting on the rest.

Things we've confirmed:

1. Getting tired out / frustrated by needing to feed so much - problems with the bottle nipple?

We tried a slower-flow nipple but that didn't seem to help much. We had a meeting with a different speech therapist (baby feeding is covered by both speech therapy and occupational therapy teams, which is a bit odd), and she suggested that we actually try a faster nipple instead, as it seemed like Eliza was having to do a lot of sucking just to get one mouthful of milk to swallow. So now we're using the "level 2" nipples and that seems to be helping a lot - she's taking more food at each feed, more quickly. Yay! We just have to be careful to not overwhelm her with too much milk when she's first starting each meal.

She's maxing out now at about 60 mL (2 oz) per feeding, and is eating about 7-8 times a day (every 2-3 hours during the day and every 3-4 hours at night). It's a lot more food than she used to eat - we're glad!

2. Urinary tract infection.

Yup. We got confirmation of this yesterday afternoon. All we know at this point is that it's gram-negative rods again (sound familiar?), and we're still waiting for identification of the specific species, but that's enough info to start her on antibiotics. Mixed feelings here - we're not glad that she has an infection again, but we are glad to at least have an explanation for why she hasn't been acting herself lately, and now we can do something about it. Treating this will probably delay her discharge, but we're not sure for how long.


Things we've ruled out:

3. Ear infection - her ears have lots of wax but do not look inflamed.

4. Thyroid dysfunction - her test results came back normal. Whew.


Still uncertain:

5. Intolerance of fortifiers. She's still on plain breast milk for now; they may try yet another different additive tomorrow if she eats well enough today. This one is thoroughly pre-broken down so it's supposed to be really easy to digest.

6. Reflux. She is still having problems with this even now that she's been on the Prilosec for a couple days - we're not sure if the switch really made any difference.

Four Generations

Before Eliza's surgery my grandmother and mom came up to provide us some support around the surgery. The last time my grandmother was able to come up was when Eliza was around 2 weeks old, confined to the isolette, incredibly fragile, and connected to lots o' beepy things. This time it was a happy change.

I come from a line of awesome women. They are smart, tough, and the most selfless, generous people I know. I am very happy and lucky that Eliza has them in her life and can't wait for her to get to know her Nana and Granny! 

Delays

As usual with Eliza, getting too optimistic or making anything resembling plans for the future seems inevitably to lead to disappointment. Bah.

Last week, Eliza's care team had suggested that she had a good chance of "going to camp" (ICN superstition - no one likes to say "going home" lest they jinx it for her) on Wednesday of this week. It was looking like a good possibility for a while, too...

I've started and discarded two drafts of this post already. It's so frustrating and exhausting, and the specific details of the last several days are already blurring in my mind. (Sleep deprivation might have something to do with that...) You'd think by now that we'd be able to handle whatever life in the ICN can throw at us, and this latest complication and delay is perhaps, in the grand scheme of things, a minor speed bump compared to things we've already dealt with - but somehow, having glimpsed the prospect of finally making our escape from the hospital, having it vanish again, even for a few days, feels like the final straw.

For the last several days at least, and possibly longer, Eliza has been having trouble with her feeds. She'll be irritable even while eating, sputter and drop her heart rate (bradycardia) suddenly mid-feed, stop sucking effectively at the bottle and instead waste time and energy inefficiently chewing on the nipple, have spit-ups even hours after finishing the bottle... it just generally hasn't been working right. Especially frustrating since before her last surgery, she seemed like she was getting pretty good at feeding....

So no going home from the hospital until we can figure out what's causing her to have these problems. There's a wide range of theories at the moment - here's some of the possibilities (and what's being done to investigate):

1. Intolerance of the fortifiers that are being added to her milk to help her grow (we've tried several different kinds, and are currently taking them out entirely for a while to see if that helps, but eventually she'll need to have these put back in in some form)


2. Getting tired out / frustrated by needing to eat so much more food than she ever needed before the surgery (not much that we can do if this is the problem...?)


3. Reflux becoming worse due to the increased amount of food she's taking in (so we're switching from Zantac to Prilosec, in case that makes a difference)


4. New bottle nipple being too fast-flowing for her liking (so we're trying a slower-flow nipple for a bit)


5. Ear infection (going to examine her ears today)


6. Urinary tract infection (going to check this today too)


7. Thyroid dysfunction (drew labs to check this today)

At least right now we have some actionable ideas as to why she's having trouble with the feeds. We've been at the hospital for the last three days, and did "rooming in" with Eliza the last two nights to keep an eye on her and try to help her eat, and for most of that time, the only theories anyone seemed to have were #1 and #2 above - one which is unavoidable, and one which can only be solved by time and growth. Plus, up until now, her hospitalization has always been a medical issue - it was starting to look like despite apparently finally having no active medical issues that would keep her in the hospital, the developmental issue of her feeding skills would keep her there anyway, which was massively frustrating. That might still turn out to be the case, but it might also be a new medical issue, which would at least suggest an immediate course of treatment. We'll hope to find out some more information soon.