Hayes and Bailey are 14 weeks old, and today is their 100th day with us… pretty big milestone given their condition 100 days ago… especially when you think about the fact that they weren’t even supposed to be here until almost TWO WEEKS FROM NOW. God has been good!
They weighed Hayes over night, and told me this morning when I stopped by that he is now at 5 lbs 2oz (remember he started at 1 lb 7 oz). He is now taking 6 of his 8 daily (24 hour period) feeds from a bottle (the other two through the feeding tube still). He still hasn’t mastered this completely yet. It’s frustrating because some days, like last Saturday when I fed him, he’ll gulp it down in 10 minutes (which is a record by the way… we make a great team… just wait until those father/son potato sack races when he gets older). Other times, we’ll struggle for 30 minutes, and he’ll only be able to take a quarter of the bottle. He never has a problem with sucking, but sometimes he just refuses to swallow. The nurses aren’t sure if this is due to gas, reflux, or just simply a consequence of the brain damage that he has, and that he might never get this down 100% (they initially thought there was a high chance that he wouldn’t be able to swallow at all due to the extent of brain damage he suffered). Despite these issues, he is doing a great job at breathing on his own now for more than a week! That’s right, breathing completely on his own, the same way you and I do… no breathing tubes, no oxygen, nothing! He hasn’t had any apneas or needed any additional oxygen since they took him off. He’s also regulating his temperature on his own now just like a normal baby. The only thing keeping him from going home right now is the bottle issues. Please continue to pray that he can master this so we can get him home without any additional attachments (i.e. feeding tube).
Bailey is now a couple of weeks completely infection and bacteria free! She now weighs 4 lbs 8 oz, and is slowly getting bigger. She has started working on bottle feeds as well this week, but has struggled more than Hayes did initially. Because of the infections, surgeries, and setbacks, she has become a little more used to not having to “work” for her nourishment. Yesterday the occupational therapist worked with her, and she seemed to do better with last night’s bottle. Today the speech therapist (didn’t know they did stuff like this) will also work with her on mastering the suck, swallow, and breathe all at the same time issues she’s been having. They are also going to do an x-ray of her lower intestines (which haven’t been used in three months) to see what kind of shape they are in, because they have scheduled surgery for her for next Thursday (11/18) to reattach her intestines! We are excited about this, because we were not looking forward to taking her home with a colostomy bag that doesn’t seem to want to stay on (this thing is disgusting by the way), and we weren’t looking forward to taking her back to the hospital after having her home so they could do the surgery. In addition, getting her back together is going to help her grow because it will give her intestines more time to absorb all the nutrients and calories from her meals. So, they are going to transfer her again on the 17th to Texas Women’s in the Med Center to prepare her for surgery on the 18th. If all goes well, she should be back at Clear Lake about a week later. Please pray for this, and for no more setbacks because if all goes well, we should be able to take both of them home by early December!
Both of their eyes seemed to be doing better, and by better I mean no worse. They are still getting regular eye exams and treatment as needed for the ROP eye issues they both have. Please continue to pray for this as well. Likewise, we still don’t really know the full extent of the issues Hayes is facing with his brain damage, and won’t for months/years down the road. We still pray for a miracle, and at the same time for peace and comfort in whatever God’s will is for him. Continue to pray for Emily. She is doing great physically and emotionally with everything that is going on, but I know things are going to be getting more difficult as she prepares to bring them home, and possibly having one home and one in the hospital, and all the attention that everyone needs (including dad J) throughout this process.
Attached are some great pictures from the last week. They have so much more personality, and look cuter and cuter as they continue to get bigger and develop… especially Bailey, but she’s a girl, and girls are always cuter than boys… Sorry Hayes, you’re still my favorite though… as parents, we’re supposed to have favorites, right? I’m still new to this.
CP and Em (Hayes and Bailey)
Y'all this is such great news! There is so much to be praying about for this family, requesting help and mercy from the Lord. At the same time, this last 104 days should provide motivation for all of us to drop to our knees humbly before the Lord THANKING HIM for all He has done! Please pray over the next couple weeks as Bailey is transferred, has her surgery, heals, and moves back to join her little brother. Please pray for endurance for Chris and Emily as they care for two babies in two different hospitals. Please pray for Emily's mom (Barbie), who is in Houston with them helping them take care of the massive number of details that have to come together every day to make all this happen. And pray for the rest of their extended family members... all those who would love to be right there with them but can't. Pray that everyone would grow in his/her love for and trust in the Lord. Finally, pray that the Lord will use this family's situation to impact YOU and help YOU grow in love for and trust in Him!
1 Thessalonians 5:16-18
Rejoice always, pray without ceasing, give thanks in all circumstances; for this is the will of God in Christ Jesus for you.