Phew...this has been an interesting week. I wish I had the time and energy to update about all of the crazy, funny, wonderful, exhausting things that have happened but I just don't. The weekends started wonderfully with a visit from my grandparents who I always love to see. Then there was a storm that knocked down over 40 trees in our neighborhood along with the power to our street for 3 days. We spent one night cloroxing a hotel room, 2 nights being spoiled at my aunt and uncle's house in Germantown (we honestly were sad that the power came back on) and now are getting settled back in at home. It really was the Lord's provision that we didn't have any damage to our house. Are we surprised? No. Are we grateful? Yes.
Penelope's week has improved. The GI specialist agrees with our doctor that she does not have biliary atresia (Praise the Lord) and that her slow bile processing and elevated liver enzymes are a result of her underdeveloped and overstressed little liver and that it will take care of itself over time. Her stool has become a more normal color and her skin and eyes are looking better everyday. He did order a swallow study to be done to see about her refluxing and then aspirating. The study showed that she is doing both and so they put her on thickened feeds to help control that. She's been doing better with the choking with thickened feeds but still seems to reflux, aspirate, and desat every time. There are a few more thicknesses to try before anything else major is done, as well as she's been put on a stronger antacid. If none of this works completely, they have mentioned a surgery that can help her tummy keep the food in like it's supposed to. This would happen at the same time as the hernia surgery to reduce the number of procedures. We'll see what comes of that.
We've also been discussing the possibility of putting in a "g"-tube when they do the hernia surgery. Because Penny is still not taking all of her feeds from a bottle, this seems like the best option to be able to bring her home once she's recovered from the surgery. Essentially it will allow us to get her home and with her sister where she will thrive more, and work on the feeding skills there while still making sure that she gets all the calories that she can. There's no sense in leaving her in the stressful environment of the hospital if it's possible to get her home. Once again, we'll see.
Lydia is doing excellently. She is still having some trouble with her reflux as well. Yesterday she was obviously in pain and I realized that her Zantac dose was done for her when she was under 5 lbs. Now she weighs 9 lbs and is still taking the same dose. No wonder it's not working! I'm fortunate enough to have a friend for a Pediatrician so I called and we decided to up the dose. Today has been much more comfortable for her. She's really starting to interact when you talk to her and even coos occasionally. It just melts your heart. Something else that melts your heart is pictures of your child. A friend of ours came and took some pictures of Lydia before her adorable newborn-ness wears off. Check out the pictures below.
Jonathan and I are both doing pretty well considering the circumstances. We're tired and sad to be apart but grateful for our girls and his job and our Lord who continues to give us strength. We're continually amazed at how He blesses us with that strength but also by meeting our every need through family, friends, and just down right miracles. It's amazing to know that even though this situation isn't what we would choose, we would rather be here than anywhere else because where we are is where He wants us to be.
Speaking of how the Lord works, through some funny "small world" type connections, we've made friends with another sweet couple and their baby at the NICU. The baby's name is Lynnlee and her mom and dad are Jackie and Josh Smith. Lynnlee was born on January 3rd (hope that's right) at 25 weeks. She's had a similar experience to Penny inutero and out including blood transfusions, ventilators, infections, etc. She was doing better but has taken a bad turn this past week and was transferred to Lebonheur. I just really would like for you all to pray for this sweet family and the hard things their going through right now. They know the Lord and are drawing on His strength like we are but I know how exhausting it can be and I know they could use all of the prayer support they can get.
Specific Prayer
- The Smiths especially baby Lynnlee
- Penelope's reflux and improvement in eating
- Penelope's continued weight gain for surgery
- Decisions about P's surgery and the "g" tube
- Lydia's reflux
- Lydia and Penelope's continued protection from harm
- Continued strength for all of us
- Praise for the Lord's protection of us during the storm (I may have just lost it if a tree fell in my house....I think He knew that was more that I could handle!)
- Praise for His continued provision
A quick shot of Penny from my ipod...not the best quality...but look at that sweet face!
Penny and her Nanny
Lydia grinning at her Papa...he's a pretty funny guy
Those are some GREAT grandparents!
Lydia was listening to Nanny intently
Penelope trying the alternate use a pacifier
Lydia's booty...see her surgery scar just below her shoulder blade?
(photo by Callie Lillard)
Since my modeling career is over I thought I'd pass the torch on to Lydia..har har har
(photo by Callie Lillard)
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