Saturday, August 29, 2015

Day 16 - HOME!

Home!! Oh my goodness!! 

After Eliza had her shunt surgery on Tuesday, our NICU team insinuated to us that we had quite a few more days for her to recover and for them to feel comfortable sending us home. They also wanted to double check a potential murmur that several doctors had heard. So an echo was ordered.

But then there was Eliza... 

After shunt surgery she required little to no pain medication. 
And she immediately went back to eat double what the NICU doctors wanted.
The murmur was debatable, even with the cardiologists. Odds are, it was nothing. But a simple follow up in a couple of weeks would be no big deal to rule it out.

So as it turns out, we didn't need to be hanging out in the NICU at all! Atta girl Eliza!! 

So after processing paperwork and getting a bajillion follow up appointments, by Thursday afternoon we got to take our girl to Alabama!!

Let me just say... There's no place like home!! 

Wednesday, August 26, 2015

Day 14 & 15

Tuesday, August 25th & Wednesday, August 26th 
Day 14 & 15

Surgery day!
Eliza's neurosurgeons felt that the ventricles in her brain still hadn't stablized and they were concerned about any added pressure to her brain (and damage that could cause). They decided they'd rather put in a shunt now instead of waiting until she was very symptomatic to a hydrocephalus issue.
In surgery, they would be putting in what's called a VP shunt. Basically the valve end is inserted into the soft spot of the brain and down thru to the ventricles to drain the excess cerebral spinal fluid. The other end of the shunt is a tube that is fed under the skin around the side of the skull, then down her body into the peritoneal cavity in the abdominal. We'd be able to feel (and actually see right now since her hair is minimal) a small lump on the top of her head where the shunt enters. Everything else is hidden below the skin enough that it's a little trickier to trace where it goes down and enters the abdomen. While it seems like a crazy procedure, it's pretty basic to these guys.
(Try telling a worried mom that!) 

So Eliza's shunt surgery went well on Tuesday afternoon! It took them about two hours and the surgeons were very happy with everything. 
Our only hiccup was that the NICU doctors didn't put in feeding orders or pain med orders until well after surgery so Eliza was starving for some chow and couldn't have any medications or food. This momma was about to get fierce for her little gal. But after exiting their meeting, her doctors finally swooped in to get her hooked up with everything she needed.

Last night she recovered well and picked back up towards the amount of food she'd been eating pre-surgery, which shocked everyone.
(Not me, I know this girl loves to eat!)   

This morning neurology saw her and said she looked perfect. They gave us the green light to be released from the neuro side. Then her neonatal doc gave us word that because she was tolerating her pain so well and eating so well, that he would be comfortable with discharging us tomorrow as long as she kept it up.
(DISCHARGING! Insert 7th grade girl scream!)

So we're crossing our fingers and toes and everything else to spring this joint in about 24 hours!

Monday, August 24, 2015

Day 12 & 13

Day 12 & 13
Sunday, August 23rd & Monday, August 24th 

Well, we've had a bit of a setback. 
(I guess it was bound to happen eventually.) 

We spent a lot Sunday preparing to go home. We'd be cleared by all specialities outside of neuro and we're just waiting on one last test Monday morning. Eliza flew through the car seat test and we started the check list to head home. 

(First time ever on her back! It was so great to see her whole little face! She was mesmerized with a new view of the world! And then promptly went back to sleep... ) 

Sunday night we were moved over to a "step-up" room in the NICU. That means that J.B. and I are rooming in with her in the hospital suite. It's a super nice room but... it's in the hospital. Which basically means that sleep is nonexistent. Oh how I miss sleep. 

But this morning when Eliza had her ultrasound, things took a bit of a turn. It looks like the ventricles in her brain still haven't stabilized and have continued to swell. She's not show any external signs of discomfort at this point but the neurosurgeons would like to stay ahead of the game. If her brain begins to swell before its treated, it could potential damage a lot of different (and important) areas. 
So this morning they've decided to move ahead with putting a shunt in. 

We basically knew this was coming at some point. 80% of spina bifida patients have a shunt within the first six months of life. It was a nice thought to be able to head home today and get a break from this exhausting hospital stay. But we totally agree with the surgeons thoughts to stay ahead of her symptons/pain/damage. 

The word in the halls is that her procedure will be done tomorrow, which is great news! Recovery is only a day or two so if all goes well with our sweet girl, we could still be home by the weekend. 

Be praying over her neurosurgeon (Dr. Bonfield) and for her recovery in the next couple of days!

Day 10 & 11

Day 10 & Day 11
Friday, August 21st & Saturday, August 22nd 

The light at the end of the tunnel!! 
We've gotten so much great news lately!

Eliza is eating and growing like a champ. She's surpassing every nutrition goal they try to give her and truly showing her Wilder spirit (we're good eaters, haha). 

Urology has give her the clear for now. She's showing great output and won't be sent home with any kind of cathing. Just a normal baby with normal baby diapers. Such a great thing! She'll definitely be followed by urology in the future to make sure this trend continues, but we are ecstatic about her bladder/bowel control at this point! 

Plastics is still thrilled with her healing and is signing off on us to heal at home. There's been some logistical debate about exactly how we'll get home with a baby that needs to stay off her back. And we're eager to find out what we can do for her as far as movement and the slow stages of changing her over to her back more often as she heals. But I guess that'll figure all that out... 

Physical therapy has been coming by every couple of days to show us stretches and excercises to do with her legs. The therapist was able to get her to move both legs even down to the toes!! I seriously could not believe it. We were told no movement from the belly button down would be normal so we are crazy thrilled.  

And neurology is our very last hurdle. Thus far, there's been no indication that Eliza needs a shunt in her brain yet (a total shock!). There are no external signs that her brain is under any pressure. On Monday she'll have one last official ultrasound of her brain to make sure that everything is still good, and if so, neuro signs off on us too! 

Which means we get to go home!! 

I can't tell you how ecstatic we are, and how surprised all of her doctors are. Each speciality just makes comment after comment about what a terrific baby she is and how she is surpassing any expectation they'd every have. J.B. And I have no doubt that this is simply God working to show us His goodness and His marvelous plan for our gal. 

Be praying for that Monday scan! 

“Taste and see that the Lord is good; blessed is the one who takes refuge in him.”
Psalm 34:8

Thursday, August 20, 2015

Day 9

So for those that read through the two posts below about Eliza's first week, you get a gold star!

Otherwise, here are the highlights today:

Plastics: Still wanting her to lay completely flat and heal. Her back incision looks good - we've got about 4-6 weeks on that. The skin grafts on her sides look fabulous but are extremely delicate - 4-6 weeks there too. And the graft donor site looks amazing. They'll probably take the dressing off that tomorrow and it'll just be treated with some lotion. 

Neuro: Still no signs of hydrocephalus! A major win at this point. Head circumference isn't growing at a fast rate and her fontanelle is soft, which all just indicates that there's no pressure on the brain. They'd like to do one more ultrasound on her brain on Monday to double check the exact size of the ventricles, but at this point, they're just monitoring us.

Urology: She's still being cathed every 12 hours as a precaution. But if this next one comes back good, they plan to stop. Her renal ultrasound looked perfect so we're cautiously optimistic right now. Fingers crossed that today goes well. I can't believe that we have a spina bifida baby that's doing any bladder/bowel control herself!

We still aren't sure about what her movement levels are. She's having to remain so still in order to heal that neuro and physical therapy really can't gauge a lot of her abilities. At this point, it seems like her hips are showing some signs of movement, but the lower legs are very questionable. 

She's still eating like a champ! We officially have the NICU's "big baby" since she isn't a premie. She's making all of these other punks look tiny! 

Eliza's first week {part two!}

{for part one, go here! or scroll down to the last post!}

Day 5 - Sunday, August 16th

On Sunday evening, Eliza had an ultrasound on her brain. Remember, the spina bifida issues in her back have tugged down on her brain and caused things to shift. The shifting creates an problem for the fluid in the brain to drain properly (a condition known as hydrocephalus). 
The neurosurgeons had done their baseline ultrasound before the surgery, and now they wanted to come back and see if there had been any changes since Thursday's procedure. It's expected that she would have retained a little extra fluid, but any extreme changes would indicate a problem. Essentially, if the fluid in her head ever starts to put pressure on her brain, they will want to put in a shunt to divert that fluid. On a daily basis, they are feeling her fontanelle (soft spot on her head) and measuring her head circumference. A swollen or swelling fontanelle indicates that the brain is under pressure. And a fast growing head also indicates a pressure on the plates of her skull. 
Her ultrasound came back with a slight increase in ventricle size (as expected), but her fontanelle and head circumference have remained perfect.  Neuro was happy so great news for us.

Day 6 & 7
Monday, August 17th & Tuesday, August 18th

Monday was a slow day. More healing. More of Eliza just laying on her belly. The NICU team also had Eliza to really start working on real feeding. She was taking to everything perfectly and they continued to double the amount of food she got!

Despite the "win" with the food, J.B. and I were really getting discouraged at this point. It seemed like both the plastics and neuro were completely vague about what the goals are and when we were going to get there. The time here was really weighing on us. I just wanted to snuggle my baby and take her home. I missed Jake. I missed my own bed and my own kitchen and my own life. The week after you have a baby isn't really the week you want to get up and get dressed each morning and go out to eat for every meal. It's not the week you want to live in a strange place and be away from most of the people that you love. And I was over it.

By Tuesday, Eliza was getting some of her dressings changed and they were checking on the skin grafts for the first time. Both grafts took 100%!! Great news!

Day 8 - Wednesday, August 19th 

The last of Eliza's dressings were changed today. They had this strange covering over the graft donor site and J.B. and I were super curious about what it looked like. The grafts were a bit scary so we were prepared for the worst. Turns out, her donor site on the back of her thigh looked amazing! If you didn't know what you were looking for, you might not even notice at this point.
Baby skin is unreal!!

Eliza also had a renal ultrasound today. Her caths have all been pretty good, and for urology to drop off the case, they wanted her to have one. Trouble is, you can't move her. Nor can you touch like 60% of her back. The ultrasound was a sight to be seen. The techs come bedside to the NICU, and it took two doctors, a nurse, and the tech to work together to get the images without touching any of the grafts or incision sites. J.B. and I just stood by holding our breaths and of course, Eliza slept through the whole thing.  Good news! The ultrasound came back perfect!

We also were able to nail down both neuro and plastics about some timing. Neuro was really well pleased. Eliza still wasn't showing any signs of actual hydrocephalus so far! No radical head growth and her fontanelle was still soft. They are waiting for a second brain ultra sound on Monday (a week out from the last one) to either officially clear us or give us some different results. But if that looks good, then they're done with us for now.
Plastics sound really similar. They're basically just waiting for some more healing at her graft sites. She's so delicately placed on her belly right now and they don't want to her moving around much at all. I think once those heal up for a few more days, they might be a little more flexible about letting us go.
Ultimately, it sounded like if everything goes well, we could be headed home within a week or so! Heck yes!

But the best news of the day?

Yup. I got to snuggle my sweet babe! She was finally approved to lay flat on my stomach. So I soaked up almost two good hours of that (and promised J.B. he could have his turn the next day).
Best. snuggles. ever. 

Tuesday, August 18, 2015

Eliza's first week {part one!}

Oh goodness, friends! My little love is a whole week old!
And we've been so busy in the last week that I've totally failed at keeping folks as up to date as I promised! It seems like we'd be sitting around bored all day in the hospital. And while there's a fair share of that, because we have a baby in the NICU, things are constantly changing and needing our attention.

So let's catch up:

Wednesday, August 12th

Our sweet Eliza was born on Wednesday, August 12th at 10:36 a.m. via c-section. This was always the intended plan with Vanderbilt so we dealt with zero surprises (like a crazy car ride or emergency surgery). A c-section was a better delivery option for her since it was the easiest way to protect the open spot on her back. 
 Delivery-wise, everything went well. J.B. and I were able to lay eyes on Eliza just as she was delivered, and before she went on her trek over to the NICU. J.B. headed off with her to make sure no baby swapping shenanigans went down and I headed off to recovery. One of the hardest things about this set up was knowing that Eliza and I would actually be in different hospitals. She was delivered (and I recovered) at Vanderbilt Hospital, but as soon as she was okayed in the delivery room, they headed off to the Vanderbilt Children's Hospital NICU. The two hospitals are side by side so you can technically take a long walk down some back hallways that will eventually get you from point A to point B, but the distance of around 2/3 of a mile isn't something to scoff at. Especially for a recovering mom. I knew this ahead of time and one of my biggest anxieties was wondering when I'd ever get to really see my baby. I tried to prepare myself mentally to not see her for a day or two (that wasn't going over well in my head...)

So I was super surprised when my room nurse bopped only six hours after I'd had her and asked if I'd like to go over to the NICU. 
Heck yes!
I spent several hours the day she was born sitting by her little layette in the NICU. Since the surgery on her back was intended for the next day, much of the afternoon and evening was spent running tests on her to make sure she was fit for the procedure. There was also an ultrasound done to check the ventricle levels in her brain. This would give the neurosurgeons an idea of what the baseline was for those ventricles.

And we just soaked her in. She's a chunky little thing, with fat rolls that Jake never had! We watched intently on her movement levels to see if or how she was moving her legs. The neurosurgeons felt like she was displaying definitive hip movement along with some movement in the lower legs. And her muscle tone looks wonderful all over, as if she's been squirming up a storm. What I loved doing was tickling the bottom of her feet, because when I did that, she jerked them away! Considering that she wasn't supposed to have any movement or feeling below her belly button, we were thrilled. 

All of this indicates some great promise, but the real question is if she'll retain that movement level after her back surgery.

Day 2 - Thursday, August 13th 
Thursday morning, she went into surgery bright and early. J.B. and I went with her through all of the prep work and met with each of the different surgeons that would work on her. The goal for the procedure was to close the opening on her back with as much precision as possible. The neurosurgeons basically rebuild the spinal column and nerves of the spine, then they pass the torch to plastics, who brings together all the muscle and tissue and skin along the back.
We've known all along that Eliza's spina bifida was severe and that the lesion on her back was large. The plastic surgeons prepared us for several different intense strategies of how they might work on her, not knowing exactly what the situation would be until they got into the operating room. 

It was a long surgery, about 5 hours. Not such a fun feeling when it's your little one.
As it turned out, the opening wasn't quite as bad as they thought.
Neuro was totally satisfied with their part, and plastics was able to do a little less evasive procedure than expected. Basically she has four sites of healing. First, a major incision along her spine. Second, two smaller, but still large, incisions on her sides. Those were created to able to properly close all the muscle and tissue at the spine. Then lastly, in order to cover those side incisions, they did a skin graft from the back of her thigh. That skin was grafted onto her sides to help close those two areas. 
So, major back incision, side incisions with skin grafts, and her graft site. 

She has to lay on her belly at all times to give each of these areas plenty of time to heal properly. No movement, no holding her, even diaper changes are tricky. Just flat on her belly in the bed. 

I was on day one of c-section recovery, which was less that fun. The distance between the two hospitals was incredibly taxing since I had to return to my own room for meals, pain medication, doctor's rounds, and rest. Major kudos to J.B. for wheeling me all over the place and just staying with Eliza by himself when I couldn't be there. 

Day 3 - Friday August 14th

Friday was a major day of healing. She was on some oxygen for awhile and pain meds to help her recover from the surgery. She still hadn't had a single thing to eat and was only on IV liquids for the most part. Since SB patients will typically have bladder/bowel issues, they started by cathing her once every three hours just to check for any volume in her bladder. She's had great diapers so far, but they'd much rather be safe than sorry.

As it turned out, she was controlling her bladder and bowel just fine so far. So the cathing was quickly moved up from every three hours to every six, every eight, and then every twelve hours. Fantastic news!

Day 4 - Saturday, August 15th

By Saturday, they started her on a very small amount of breast milk that she took through a tube marvelously. They they began to quickly double the amount she was drinking and within a few days we had gone from giving her 8 mL to 60 mL. The doctors couldn't believe how easily she was handling it all while laying on her belly.

Saturday was also the day that I was discharged from the hospital! Yay! While I wasn't feeling just amazing, I was glad to be done with the trips back and forth. I was super thankful for my OB with the Fetal Medicine Clinic at Vanderbilt. They saw us through every stage of pregnancy with Eliza and my favorite OB was the one to deliver her. She came by Saturday and was so kind and encouraging about our sweet girl. I might have cried. 
(let's blame it on the hormones...) 

J.B. and I were able to discharge from the hospital and immediately get a room at the Nashville Ronald McDonald House. That was such an answer to prayer. We'd been told that the RMH often had a long waiting list and took a few days to get into, so no wait was amazing! For a super low cost, the RMH provides a room for us to stay in just three blocks from the hospital.

And if that wasn't enough, on Saturday my parents also came up with Jake! Oh my goodness, four days without my first baby was hard and we were so excited to see him. My parents got to meet Eliza and dote on her while J.B. and I got to dote on Jake. He stayed with us our first night at the RMH and thought the place was just so cool.
Unfortunately, he's too young to visit Eliza in the NICU so he'll be meeting her when we get home. 

Whew! So much to type! Stay tuned for part two!

Sunday, August 16, 2015

She's here!!

Our perfect lady!! 

Eliza Grace Wilder was born Wednesday, August 12th at 6lbs, 15oz and 19 inches long.
And she's a squishy baby! Love her rolls! 

We are so happy that she's here and can get the absolute best care. Vanderbilt has done an amazing job thus far with her care. More on that to come.

For now, here's our sweet gal on her birthday: