I haven’t sent an update in awhile, but since the babies will turn 7 months old this week, and we have some more medical hurdles to clear in the next couple of weeks, I thought it would be a good time to update everyone, and solicit some more of your prayers.
Both Hayes and Bailey are doing really well since settling in at home, and we’ve managed to keep them both healthy to this point through flu and RSV season which is a major accomplishment considering the weakened status of their immune systems. We were even able to get through a scare a couple of weeks ago when Emily was diagnosed with the flu, thanks in large part to the help of good friends and family who stepped up to help out when I couldn’t be there so that we could keep Emily quarantined long enough to get better so she didn’t spread it to the babies. Luckily we caught it early enough that Emily was able to get back on her feet in 4 or 5 days, as daddy, grandma, aunt, uncle, and good friends’ love just isn’t the same as mommy love! We visited the pediatrician yesterday for the final round of flu/RSV shot for this season, and the pediatrician said that she thought both babies were doing great… what a huge praise!
Bailey is now 22.5 inches long, and 10 lbs 12 oz (from 1 lb 9 oz at birth), which puts her at about the 25-50th% in length, and 10-25th% in weight for her adjusted age of a little over 3 months… if any of that means anything to you. I don’t think she could be a better baby. She is so playful and expressive, and really very calm most of the time… especially compared to Hayes… which might not be the best comparison for “normal” baby behavior (he is very fussy). Speaking of normal babies… we finally got Bailey off the oxygen! Her breathing test was during the time that Emily was sick, so I took off work to take her. I think it was more a test on me (and my patience), as she had to lay in a crib for 4 hours, and I had to try and keep her relaxed, and keep her from kicking off her monitor equipment… those of you who have seen her live in action, know that if she is awake she’s moving. She only kicked or pulled the monitors off twice, so I think I passed my test. More importantly, she passed the breathing test and has been off the oxygen for two weeks now… no more helium sized oxygen tanks with 50 feet of tubing running through my house, no more dragging a tank with us everywhere we go, no more taping a nasal cannula to her face and trying it in her nose when she keeps trying to stick it in her mouth and suck on it (gross). She’s been doing great (as far as I can tell) since she has been off of it, and will have a follow up appointment in a couple of weeks for the pulmonologist to check how she’s doing without. Please continue to pray that that goes well, and she continues to breathe well without any additional support.
Hayes is now 23 inches long, and 12 lbs 1 oz (from 1 lb 7 oz at birth), which puts him at about the 10-25th% in length, and 10-25th% in weight for a boy at his adjusted age of a little over 3 months. So they are both a little undersized, but Hayes is in the 50-75th% weight for length percentile which means he’s a good weight for his size. Unfortunately Hayes has not been as laid back as his sister. We are hoping that this is largely due to the pain and discomfort of the double hernia he was born with. They didn’t want to fix this until he got older and stronger, so he has required a lot of attention most of the time to try and keep him calm… a lot of holding, bouncing, rocking, shushing, etc. We have been told that because of his brain damage he wouldn’t have the self soothing abilities of a normal baby, so we are hoping/praying that his issues have less to do with that, and more to do with
the hernia because he has finally reached the point where they can do surgery. The surgery is scheduled for 8:30 tomorrow morning.... Earliest possible time and place we could get this scheduled for, and since we’ve been praying for this day to get here for the last three months it can’t get here soon enough! Dr. Bloss (who performed all of Bailey’s surgeries) will performing the procedure, in addition to circumcising him as this wasn’t done at birth (I assume due to risk of infection or something… don’t know why they didn’t do this at birth). It’s supposed to be a fairly routine procedure, and of course we have the utmost confidence in Dr. Bloss, but we would still appreciate your prayers. If all goes well, and he’s able to come off the vent fairly easily and timely, we should be able to take him home later tomorrow afternoon/evening. If not, they will keep him over night, and should be able to come home on Friday. So, in addition to praying for the surgery procedure, and for Dr. Bloss and the rest of the medical staff, please pray for his recovery, and that there aren’t any infections, side effects, or setbacks.
Also pray that this is able to help him relax, and be more comfortable, and that the issues we’ve been having with him aren’t all brain related. Of course we also continue to pray for his brain, and for miraculous healing to take place there, and that remaining portions of his brain can take over some of the responsibilities of the damaged portions. By all accounts he has been able to do more than the average baby who has suffered the degree of damage that he has. Unfortunately because of the discomfort from the hernia, the early childhood development (ECD) specialist has not been able to take him through all the motions, and really assess how he’s coming along. Bailey on the other hand is doing extremely well with her therapy, and we praise God for that! Hopefully we will be able to get a better idea of where Hayes is at next week when ECD specialist work him out again. In addition, he has an appointment next week with the neurologist who diagnosed him following his first MRI. Pray for a positive report there as well.
I know everyone has been asking for more pictures so attached are several of the latest. Maybe it’s just the stress level and sleep deprivation, but they really do seem to have a lot of personality and are a lot more fun to interact with than I thought they would be. I hadn’t spent a whole lot of time with babies before, which was a conscious effort on my part, because I just thought that all they did was eat, sleep, poop, and pee. I was pretty much right (only with less sleeping and more pooping/peeing than I ever could have imagined), but every now and then, in about 10-15 minute increments, they can be pretty fun.
Thanks again for everything you’ve done and continue to do,
CP, Em, Hayes, and Bailey
I am amazed daily at how the Lord has grown these babies! They have squish! They smile! Hayes is upset for much of the day, but he does smile! These kids LOVE their family, and they know that they are loved by their family. These and many other things are miracles that are not to be taken for granted.
Please continue to pray for the Perrins. Pray for Hayes tomorrow as he goes in for surgery. Pray for the physicians. Pray that he experiences relief from his discomfort. Pray that his brain continues to develop. Pray for Bailey's continued growth and development as well. It's always a bit scary to even enter a hospital with your children, knowing that it's a germ factory. Pray for protection from illness for everyone in the family so that there is nothing else getting in the way of the babies' wellness, healing, and growth.
PRAISE the Lord for all that He is doing in their lives! Praise Him for preserving the lives of both of these babies through so many major obstacles. Praise Him for using this whole situation to draw the Perrins and countless others closer to Himself, the only One in whom we have any hope!