Saturday, November 28, 2009

Worth the Wait!

James came home from the NICU last Tuesday afternoon, after 11 weeks of captivity! :-) Here are some of our last moments in the NICU before taking James home, including photos with some of our favorite people at Emanuel Hospital.

(As we are discovering, even though all the shirt-and-pants sets are adorable, they just don't work on a baby who's got so much going on in the tummy area...everything starts flopping around, as you can see in this photo! The last thing we want is for a bag to get punctured or a tube to get snagged on something. So it looks like he'll be in snap-up jammies for a long time!)

One of our favorite nurses, Nicole. She and her friend/fellow NICU nurse Eboney always went above and beyond for James, even making him scrapbook pages and buying him little outfits!

James' main NICU doctor, David Pawlik. He was a great guy, always explained things well and answered all our questions. By the end he felt like a family friend. :-)

He's in the carseat...finally! It's actually happening!

Heading out the NICU doors for the last time, escorted by another favorite nurse, Melanie.

While greatly anticipated, that first day felt like utter chaos. We got to the hospital at 10:00am, expecting to be discharged around noon. Then his ostomy bag fell off, so we had to replace that. Then we discovered that all the stitches holding in the catheter in his lower intestines had pulled out and the tube was just dangling there, so the surgeons had to be called in to repair it. ended up being more like 2pm when we finally got out of there. The home health nurse showed up at our house at 3pm for what we thought would be a quick run-through of how to set up and use the equipment. It ended up being more like a full-on "how-to-become-a-nurse-in-2-hours" crash course, complete with about 5 big boxes of medical supplies. I was trying to furiously take notes and absorb at least half of what she was saying to me, all the while realizing, "We're going to be trusted to do all this by ourselves...on our own baby! Including mixing chemicals and hooking up IV lines that go directly into major blood vessels in his heart! Are they crazy?!" I'm usually pretty good at staying calm, but I can say for sure that all I wanted to do that day was crawl into a hole somewhere and not come out until it was all over. To say I was feeling overwhelmed would be a great understatement. Thank God for my husband! He's such a rock, someone who is steadfast during a storm, and I know together we can get through anything...and already have! We've done all the medical stuff together for the past few days and I can now say that it's getting easier and more manageable each time. I bet in a few weeks it'll feel pretty normal...but it's still scary. The first night James was home, my mom was still here since she'd been watching Maddie for the day. At 6pm it was time for us to do all his medical stuff...change diaper, change gauze dressings, empty ostomy bag, hook up his feeding tube for formula and start his IV nutrition. Since we had to lay him down and "mess with him", James was screaming bloody murder on his changing pad. Just then, Maddie trips on the stairs and now she's screaming too. And Keith and I are trying to breathe, remember when to clamp and unclamp James' central line, and praying every second that we don't do something to cause permanent damage to our baby boy. At that moment I was like, "Okay, God. This is a nice test of my ability to hold it together! What's next? Setting off the fire alarm? A S.W.A.T. team busting through our front door? Could you not give me just a little breathing room on our first try at this?" Then we tried hooking up the feeding tube pump and IV pump and had problems with both of them, so lots of calls to the on-call nurse. Then at 5:00am we discovered James had pulled his feeding tube out of his nose! Just the cherry-on-top to a crazy day. :-)

The first few days were a period of anxiety and adjustment for all four of us. James barely slept more than 10 minutes at a time during the first two days (nights were better) and only wanted to be held 24/7 (which, after 3 months in the NICU, can you blame him?!) and would scream if we even thought of setting him down to do something take a bite of food or go to the bathroom. (How dare we! A baby's got needs, dont'cha know!).

Each day things have gotten a bit smoother as we ease into a new routine. The best part of the day is between noon and 6pm, when James can be unhooked from all his tubes and just be a normal baby. Put that little guy in a Baby Bjorn carrier and walk around the house and he is one happy camper! He's been going to bed around 10pm and this morning he slept until 9:30am! HEAVEN! Keith and I do have to get up during the night, but usually only around 1:00 am and 4:00 am, so it doesn't feel too bad. As long as he's being held during the day, he's very calm and happy and barely ever fusses for more than a few minutes. Pretty amazing, considering all he has going on.

As we go on, our weeks will continue to be filled with doctors and hospitals...Tuesdays are visits with either his gastrointerologist or his surgeon, Fridays are visits at home from a nurse to change the dressings on his wounds (the large one across his stomach is now completely healed over, so now it just needs to get tougher and deeper) and draw blood for labs, and then if he qualifies for Early Intervention he may get services from either physical therapy, occupational therapy or speech (at this point, for issues that preemies face who aren't able to feed much by mouth).

James getting a little "tummy time" on Daddy.

I'll try to keep updating the blog when I have time, but lately any free moments have been reserved for things like eating, using the bathroom and sleeping! (I know, how selfish of me!) Thank you all for your prayers throughout this crazy journey and know that we appreciate them now just as much as in the beginning--we're entering a brand new phase, which has its own joys and fears and challenges. Please also pray for Maddie and her adjustment. All of this has been taking a toll on her as well and I'm sure it's overwhelming for a little 3 year old mind to make sense of it all and her new role. The last few days have been filled with constant whining and many tears, some warranted but most not (did you know that needing to change the batteries in the TV remote should be cause for a meltdown?). She's missing the 1-on-1 attention she's had for the last 3 years, is not getting enough sleep, is feeling the pressures of potty training, and is not quite sure how to handle James crying while Mom and Dad are hunched over him with tubes and syringes and bags coming out of him and whatever else. So she could use some comfort from our Heavenly Father right about now. :-)

Maddie is already teaching James his numbers.

I'll leave you with some photos from Thanksgiving at my parents' house, which also happened to be Keith's 38th birthday!


Nicole said...

Sounds pretty intense, but I'm sure you guys are doing great playing nurse. I'm glad things seem to be settling down. Hopefully they continue to get a little bit easier as the days go by. I know first hand that James has strong opinions about being put down when he is awake =). He just likes to snuggle and play. Congratulations on being able to take him home. We miss him, but we are glad he isn't stuck in our unit anymore. Thanks for the update.
-Nurse Nicole

Brooke said...

Lisa, you are just amazing- you and Keith both actually. I was overwhelmed just reading your post, yet you find a way to still stay so positive. We will send many much-deserved prayers your way in the days and weeks to come. James could not have been entrusted to a better family.

Thanks for the update!

Katy said...

Oh gosh. SO much to do and learn and complete. God truly put you four together!
As I was showing the kids the new photos they were beaming (as was I) and SO excited. Thank you for keeping us all updated

Heather Elizabeth said...

Lisa-So glad to see your photos tonight as I did miss you today. Praying for you daily and Boston is committed to praying for Maddie :) Love you all!