I haven’t updated on Belle’s progress for awhile, mainly just because we have been so busy living life. My last update was at 7 months, only a few days before a surprise line break bought Belle and Daddy a one way chopper ticket to CHP. Thankfully, they were able to repair her line in the ER, and it showed us she could maintain her glucose level for longer than we previously knew. (I must say it is AMAZING how they use these tiny tools to fuse this tiny line together and it actually works again. I also should say that it was NOT a pleasant experience and it took 3 of us to hold a very hysterical Belle still enough to let the IV team work using sterile procedure). We were able to go home that night and the line has worked ever since, thank God. The last few months have been amazing as we have just really had a wonderful summer enjoying our home, camping, and visiting with friends and family. Looming over Joey and I was one issue with Belle that has been quite frustrating. She hadn’t gained any significant weight for over 3 months. It seemed that time kept passing and Belle was progressing cognitively, but she just kept staying the same size. As much as things were going “well,” this was a dry season of waiting for me as I was becoming increasingly concerned with her lack of growth. Each month the doctors would make a change, and each month she would weigh almost the same. Finally, at our last appointment, Dr. King seemed to have hit the sweet spot with her calorie intake because she gained a pound in a little over a week! Only a few days after that, Belle had her iron infusion (Also not a pleasant experience with a baby!) and the pair of changes have really given her the boost she needs. She is in to EVERYTHING now, so much more energy, and just so happy. We had a great weekend camping when she got to play in the creek for the first time (feet only!), ride in the bike trailer with her brother, and spend lots of time with her cousins, aunts and uncles, Mimi and Pap, and tons of friends who came to visit us.
A friend who I hadn’t seen in months came over today and I was so touched when she asked me about how Belle’s liver, line infections, and weight gain have been going. Months ago, I think before Belle was even born, I blogged asking people to pray those specific prayers for her. I pray for those things regularly, but it blew me away that someone had remembered those specific requests and was still praying them fervently. It made me realize I should update on those areas as well as specifically where we are now in the big picture of Belle’s journey with MMIHS.
Liver Function– All signs point to Anabelle’s liver doing great. Her numbers are all normal, not elevated at all. We have Omegaven (Belle’s omega-3 fatty acid) to thank for that and as time goes on and I learn of more families on TPN, I’m learning how incredibly fortunate we are that her care is from a hospital that is active in the Omegaven study and that Belle started this life saving lipid at one month old. Liver failure is the reason kids on TPN use to need transplants in the first months or years of life. Although her doctors have made it clear that there could be some liver damage they aren’t seeing, with her numbers being great, it is of no concern at this point. Praise God!
Line Infection– Belle will be 10 months in a week and we have not had a line infection yet. That is only by the grace of God.
Growth-I already explained that this has not been going as well as it needs to be. Belle made a big jump the last few weeks, but she still isn’t where we would like her to be at this point. There are some new possibilities in the works in Pittsburgh that Belle’s doctors think may work great for her with fewer restrictions than Omegaven, but with the same benefits to her liver function so we are excited about that possibility in the next few months. She definitely has knee rolls and two chins, so we know she isn’t malnourished, just petite!
There are two new areas we would ask for your prayers. Again, we fully believe that Belle is doing so well due to the many specific prayers lifted up in her name so I am shameless in requesting prayer for her, and unapologetic in acknowledging where her help comes from.
“Stinker Belle”– We are so thankful that Belle is progressing cognitively and physically. However, as she grows, all of the things that are “normal” (whatever that means) about her are also proving to make it more challenging to keep her from hurting herself. She has affectionately earned herself the nickname “STINKER BELLE.” For example, she has found that the same line that gives her the nutrients she needs doubles as a great teether (Lord help us!). It fits perfectly in her little fingers and she thinks it is so hilarious to grab it when we aren’t looking and yank as hard as she can. She insists on holding Daddy’s hands when he is trying to hook up TPN (which has to be sterile) and she gets a kick out of kicking whatever she can out of our hands while we are working. Her walker which use to remain stationary now moves and that means making sure her pump moves with it. If you pray for Belle, please give thanks that God has allowed her normal cognition and mobility, and pray for us that we will be able to keep her safe through the next stages of her life when she is too young to understand and too active to slow down.
Seasons Change- One of my favorite verses is Ecclesiastes 3:1-“There is a time for everything, and a season for every activity under the heavens.” I truly believe that to be true. In Belle’s life, there was a season to prepare for her arrival, a season to live in the hospital, a season to adjust to home life, and our current season to enjoy amazingly fun and normal days as a family of four. For me personally, thanks to my gracious friends and colleagues giving me a gift that only my coworkers had the power to do, the last year has been a season to stay home with my two kids, to be wife, mommy, nurse, health manager, chauffeur, to enjoy the precious gift of time that is not promised to any of us. However, seasons change. Just as this last year was a season to stay home, August will bring with it the season for me to return to teaching. This is a decision that is deeply personal and that Joey and I have put great thought and prayer into when deciding what is best for our family. I’m not going to get into the reasons why I’m going back, but I do ask for prayer as we make another transition. We consider this an experimental decision that we will have to reevaluate continuously with Jonah and Belle always being our top priorities.
We give all the praise and glory to God for giving Belle such health and good days. When I knew Belle would be sick, I NEVER dreamed life could look so “normal” for us. I NEVER thought she would get to do all the things she is getting to do. I could NEVER express our gratitude to God and to our friends and family for helping us navigate this life. I mean seriously, the girl can’t eat! (Actually she can, but she can’t get calories from food. I know, confusing! ). She is a living breathing miracle, as are all the thousands of people living their lives to the fullest on TPN. I know life probably won’t always look this way. I know there will be dark days, probably dark weeks and maybe even dark months. We have had dark days and dark weeks and dark months. So we try to focus on breathing in every smile, giggle, new experience, and GOOD day. There sure have been a lot of good days lately. And still we (sometimes grudgingly) give thanks for the character refining, lesson learning, and the humility building that come along with the bad days, for we have learned that they too are gifts that the many seasons of Belle’s life have brought us.
All Our Love<3