It has been a while since I've had a chance to write an update about my friends, the Perrins. A lot has happened in the last three weeks, that's for sure!
Let's start with Hayes. Chris was able to hold him for the first time on September 28 (Day 55), and they had all kinds of great conversations about sports. Chris is the director of game-day operations for the Houston Texans (in addition to his full-time job as an accountant), so he had all kinds of things to share with Hayes about that week's game. This is something that Chris has been so eager to do with a son--talk about "the game"--so this was no small blessing! Considering that Hayes could have died on multiple occasions already, we know that this is a MIRACULOUS blessing and one that is not taken for granted! Check out his SWEET face!!!!!
Since that day, Hayes has continued to PROGRESS (also a word that the doctors didn't really expect to use to describe Hayes' condition). He moved from continuous drip feeds through the feeding tube to bolus feeds (where they dump a feeding's worth of milk through his tube at once instead of a slow steady drip). He handled this really well and was required to practice sucking at the same time he was being fed so that he would begin to associate the sucking motion with feeding. Shortly after, he began to drink from a bottle!!!! This is again totally miraculous, because the doctors told Chris and Emily to expect that Hayes would NEVER be able to move off the feeding tube to a bottle or other form of feeding, because his brain most likely wouldn't tell his airways to shut off to push his food to his stomach! AMAZING!!! The next time you swallow anything... a drink, food, saliva, your gum... you'll know that this is a GIFT!
Chris heard that reggae music is stimulating for babies' brains, so he did his good daddy duty and played some Bob Marley for Hayes on the iPod. Hilarious!
Hayes is now almost 4 pounds. He continues to struggle with some apnea episodes, and while it's definitely an area that we hope improves, this is normal for a baby in his stage of development. He is completely off the ventilator and is just relying on the nasal cannula for a bit of supplemental oxygen... something else that the doctors told Chris and Emily not to expect he'd ever be able to do for any length of time.
There is still so much that is unknown about how long or how completely the Lord will allow Hayes to develop. He is amazing people left and right though as He works to grow this little boy. Our merciful Father is granting Hayes the ability to do things that no medical professional thought he'd be able to do.
A couple months back, I gave this little guy the nickname "Tank", and when you see this next photo of his handsome face, you'll see that this nickname is seeming more and more fitting every day! If you scroll a few blog entries back and see his tiny, very frail self just a couple months ago, you'll know how HUGE the details found in the last few paragraphs are!!!! The Lord has performed miracle after miracle in this little man's life! We have reason to HOPE in our strong, perfect, wise, and purposeful Creator! Please continue to pray with great hope that the Lord will continue to work miracles in Hayes' life and that the 25% of Hayes' brain that is remaining will be used in astounding ways as he develops further. Please also pray against further infection, especially as we enter cold and flu season.
And on to Bailey. Throughout this whole ordeal, Bailey has definitely dealt with a greater number of physical issues (recall her ruptured intestine and surgery, necessary heart surgery, collapsed lung, and a couple smaller infections). Despite this fact, her prognosis has consistently been more optimistic than her little brother's. She has an ostomy bag until her intestine repairs enough for it to be reattached, and this has slowed down her feeding progress compared to Hayes. She has had to be fed smaller amounts and has progressed each step a bit more slowly, because the tear in her intestine was so high that they have to be careful not to rupture it again. The problem is that the ostomy bag, while helpful as her body heals, is an additional site for infection to enter her body.
Bailey began to regulate her own body temperature, and so she was able to start wearing clothes. (Hayes did this as well several days after Bailey.) Here she is in one of her super-cute flowery outfits next to her Beanie Baby so you can get an idea of her size. Chris estimates that she's about 12-14 inches long max. He also joked that if you had to wake up to a life-size Beanie Baby, you'd quickly see how traumatic this whole experience has been for the babies! Ha!
Bailey moved from the ventilator to the nasal cannula a few days after Hayes. And finally on day 65, Chris was able to hold her too! Can you even imagine waiting 65 days to hold your baby girl!?! I cried when I saw the photos. I imagined how happy it must have made Emily to see Chris have the opportunity to finally hold both the babies. As a mom, it's fantastic to hold your babies... and it's equally fantastic to see them all snuggled up in Daddy's strong arms.
You probably noticed Emily's awesome hair in that last photo. She always has GREAT hair, even if it's in a ponytail! Probably not the most important detail, but it's definitely noteworthy.
Anyway, back to Bailey.... With regard to feeding, she was on continuous feeds through the feeding tube, getting less than Hayes so that her intestine didn't rupture. She got extra calorie supplements as well so that she would keep growing. She was moved to bolus feedings, getting smaller amounts than Hayes at each feeding, and went through the same sucking-while-being-fed practice with the hope that she too would be able to move to bottle feeds and have her intestine reattached (she needs to be able to tolerate bolus feeds before this surgery can happen). I told Chris it was a little bit strange to pray that his kids would suck... but I agreed to do it in this case. It won't be the last time we pray such things for them, I guess, so we better get used to it. Bailey was progressing, slowly, but surely.
"Was" is the key word in that last sentence. Sadly, Bailey came down with an infection several days ago. They backed her off the bolus feeds and went back to the continuous drip-style feed. She was put on antibiotics. Then stronger antibiotics. It wasn't working well. Chris and Emily went to the hospital yesterday morning, and she looked very sick (see the left photo below). By the time they went back in the afternoon, she had been put back on all her monitors, had her cute clothes taken off, and was back on the ventilator (see below right).
Today, it seems as though her infection is getting a bit better, as her spinal tap was clear. Can I just stop and say that I've had just a couple needles in my spine throughout my life, and they were not fun! I had a spinal tap when I was about five, and I still remember it. I don't remember a lot of details about being five, but I DO remember that. I know that these things have to be done, but it makes me sad for these tiny little ones. They have these kinds of things done REGULARLY. They are troopers! Thankfully they won't remember ANY of this!
The goal for Bailey is to change her antibiotics again tomorrow to something stronger, re-start the bolus feeding (as a reminder, that's when they do a feeding of several ounces all at once through the tube as opposed to a slow drip through the tube)... and as soon as she's healed from infection and tolerates the bolus feeds, then hopefully they'll get to reattach her intestine to get rid of the ostomy bag and eliminate this entryway for infection. There are also discussions about whether or not they will remove her PICC line (a central IV line), because that too could be an entry route for infection.
Somewhere during the last three weeks, Chris and Emily learned that Bailey has ROP (Retinopathy of Prematurity). There are several levels, 4 being the worst. She's at level 2. This could mean nothing really, except that she might need glasses. It could also be worse, and could end up leading to complete blindness (that's usually a level 4 issue, from what I understand). Basically, it's too early to tell.
If you have followed all the way through this note, you are able to see very clearly that our bodies are very complex and that, in order for life to go on, so many things have to right all at the same time! Bailey's and Hayes' bodies have had some pretty crushing blows in the last 11 weeks or so since their birth... but overall, SO MANY THINGS HAVE GONE RIGHT!!!! We have reason to praise the Lord, and we have reason to HOPE in Him!
Please continue to pray for both babies, for Chris and Emily, for their other family members who do so much to support them, for the doctors and nurses caring for Hayes and Bailey, and for their church family who is walking through this with them helping them do things like mow the lawn and clean their house in addition to holding them up with prayer and encouragement. In the midst of this trial, Chris and Emily have already had countless opportunities to share their faith with others, pointing many people to the Truth of the Gospel of Jesus Christ. They are not only speaking of the hope they profess, but they are demonstrating it daily! As you pray for the babies, pray not only for their healing, but that the things the Lord is doing in their lives will continue to change the lives of many and that He will be glorified!
Thank you to those of you who are concerned and praying for our friends! I will leave with this simple truth from Scripture as Job is talking to God:
I know that you can do all things, and that no purpose of yours can be thwarted.
--Job 42:2
Amen! May we all be reminded that the one true God can DO ALL THINGS! He is the ONLY One who can do all things! Every one of our prayers is heard by this infinite God. Let's appeal to Him on behalf of the Perrins with increasing HOPE, trusting Him fully!
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!
(Left--Bailey all cute and happy; Right--Hayes and Emily)
