Skip to main content

Abby's Early Days

Day 3 of Our New Normal




Bear with me as I more or less summarize our day! We headed to the NICU this morning in time to hear the doctors round on Abby. As much as we can, we like to be in on their conversations so that we can ask questions as necessary. We've learned and seen some things we probably wouldn't have otherwise, so it's been good.



I was able to do Kangaroo Care again today! (I realized I didn't explain what that was yesterday. I hold Abby skin-to-skin and cover her with my shirt and blankets. The nurses all firmly believe in how much it helps the babies...and the mommies!) Matt woke up with a little bit of a cough and he did not want to risk getting Abby sick, so he didn't hold her. He was disappointed, but hoping he gets better soon so that he can bond with his princess!



We left Abby alone for a while and ate lunch so that she could rest before an afternoon and evening of visitors! Her fan club: my sister, my friend Kelly, Pastor Jay and Bari-tennette, my parents, and Matt's parents (in that order!) It was a busy day for her, but she did great!



It's amazing how much we (and the nurses) have learned about her in such a short time. We know the positions she likes best, recognize the signs when she is having trouble breathing, and can often anticipate when her levels are going to start going down! She is definitely developing patterns that are making it a bit easier to care for her. While there isn't much that I can do for her right now, I like that I am learning how to help her improve her breathing habits.



Tomorrow will be a big day: Abby will start eating!! She will begin receiving milk through a feeding tube, which is quite exciting for us--one more step! Again, this also helps me to feel more useful during her care: it's something I can provide! We're hoping she tolerates it well so that she will continue to receive feedings. Otherwise, it's back to the boring old IV fluids!



I was discharged today, but the hospital offers on a case-by-case basis for families to "sleep over" in an empty room for up to 2 nights when their baby is in the NICU. We are very thankful for this because we are on a waiting list for the Ronald McDonald House. We're hoping to get in by Tuesday when we have to leave here. It will be really nice to finally have a permanent "home" where we can settle in, unpack, and develop some sort of a routine.



We will be leaving early tomorrow morning for home so that we can pack for a long-term stay, visit with Caleb for a little while, and get some much-needed hair cuts! We'll come back here tomorrow afternoon with all of the things we will need for an extended stay.

Sign My Guestbook Read Tributes



Tuesday, October 26, 2010 10:51 AM, EDT

Abby had a pretty good day yesterday, although she pulled her trumpet out of her nose twice! She's feisty, I tell ya! It's obviously irritating her, but they can't switch nostrils because it won't fit in the other one. She has one side that is smaller than the other, so the trumpet will only go in the right side. Poor thing!



The ENT team will be doing a scope of her airway on Thursday and to determine the next plan of action. They are looking at some long-term options to help her breathe better on her own. We aren't sure of the time of the procedure (remember that whole "hospital time" issue?), but please pray fervently on Thursday. This will be her first time under anesthesia and I would be lying if I said I wasn't nervous about it.



Matt and I went home yesterday for a little while to pack for a long-term stay. We stayed at the hospital again last night, but are so thankful for my cousin who is allowing us to stay at her house while she is away for a few days!! It will be nice to have a "homey-er" place to stay while we are waiting to get into the Ronald McDonald House (RMH for short). Please pray that we will get in there soon! We are looking forward to unpacking and not living out of suitcases and bags for a while.



By the way: RMH is a wonderful organization! Say what you want about McDonalds--they definitely have a wonderful foundation! I know people are all up in arms about the lack of toys in the Happy Meals these days. Perhaps you miss your cheap Spiderman action figure, but I am personally thankful that they are instead donating that money to RMH! I know that my spare change will be going in those containers at the counter from now on.



We met with our social worker today. She is a wonderful woman who has been with us since the beginning of my hospital stay. Not only can she get things done for us (specifically paperwork!), but she is so compassionate and thoughtful. We are so thankful for Catherine.



Caleb is still fighting a cold, but we saw him yesterday and he is very excited to meet Abby. He enjoyed looking at the pictures and especially thought it was cool that she got to go camping in a tent and play the trumpet. :) We've been pleased so far with how he has handled all of this. We are really hoping to get him up here soon--to meet Abby, and also to be more of a family unit!



Sidenote: My sister is amazing. She has more or less adopted Caleb and has been so wonderful with him. Thank you, Amy! You are doing us an awesome service by loving on our boy for us while we're here!!



Well, we're heading to the cafeteria to get some food before spending some quality time with our girl. (We have to step out while the doctors are rounding on the other patients, so it was a good time for me to post.) Here's hoping I get to hold her again! (Matt is still fighting his cold as well, poor guy!)



Sign My Guestbook Read Tributes



Tuesday, October 26, 2010 9:23 PM, EDT

Home



We got THE CALL from the Ronald McDonald House today saying that they had a room available for us! We were sooooo excited and quickly packed everything up before heading over.



The place is amazing! There is a really nice play room, tons of books, movies, video games, and board games, a really cool playground that is completely secure, two huge kitchens with everything you need, lots of goodies all over the place for us, tons of activities for the kids, breakfast and dinner provided...it's pretty crazy.



On Sunday, there will be a big RMH parade where the families dress up and march through the streets. They get tshirts, lunch, candy, play games...Caleb will love it! We were already planning for him to be here anyway, so it will be great.



They have free tickets available for local attractions like the Science Center, aquarium, Port Discovery, and the zoo. We're planning to space some of those activities out so that Caleb will have plenty to do. For now, the house alone is entertainment enough!



I will try to take some pictures of the house tomorrow. You can check out www.rmhcbaltimore.org , but the pictures do not do it justice! The house is beautiful and the rooms are so, so nice.



Matt and I really feel like we are home now. We finally have a place to unpack and chill when we're not at the hospital. We've already met another nice young couple with a little boy at JH. I think we'll enjoy getting to know them better.



I know I said it before, but this is an awesome charity. We are so, so, SO thankful to be here!!

Comments

Popular posts from this blog

Cerebrocostomandibular Syndrome

If you happen to pick up the latest Reader's Digest, there is an article in there about Piper Breinholt , a four year old with CCMS.  If you've been around here a while, you'll remember wayyyyyy back when we first received Abby's diagnosis that I was able to speak to Piper's mom, Reagan.  The article is more about their story and not as much about the ins and outs of CCMS, but I think it's probably enough to get some people googling it and I'm hoping a few will end up here. Every once in a while, I give a blog post the title of Cerebrocostomandibular Syndrome so that it would show up in Google.  My ever-present hope is that people will stumble across my blog and 1) be encouraged by the hope we have in Christ, 2) feel a connection with someone in a similar situation as them, or 3) get excited over the miracles that have been performed in Abby's life!!  (a combination of all 3 is great too!)  :)   Notice that it's not to get famous and it ...

Bath Time Photos!!

As promised, here are lots of photos of Abby's first bath. Caleb was supposed to be in bed, but the bathroom is right next to his room... "I'm not too sure about this..." Once she learned how to splash, she was all smiles! Her first good hair wash! Gotta protect the trach! She really liked getting water poured on her head.  It was cute! Smiley (and bubbly) for Daddy while he dried her off. All clean!!  (Note the Lysol wipes in that last picture.  They are NEVER far away!)

Imagination Movers Photo Recap

Seriously, The Imagination Movers were so much fun!  They played lots of their own music, with some classic rock mixed in for the adults.  There were also quite a few jokes and references to Baltimore, which was kind of fun.   The whole night centered around this robot named Rock-o-Matic, or "Rocko."   This is Mover Scott, and he wears Wobble Goggles that help him see new ideas.  Caleb and Abby have a pair of goggles too.  :) There are 4 main Movers that are part of the TV show, but they have 2 extra movers to play instruments and do back-up vocals in their live tour. Abby finished up her feed before the show started so that she would be free to dance! My dancing queen did NOT want to sit in my lap.  The row in front of us was empty, and that is where she stood almost the entire show--dancing the night away. My Imagination Movers  Caleb did his share of singing and dancing too.  He knows m...