It’s been a while since I’ve updated, mostly because it’s been so busy! Things are good!! Praise God!! Poppy is doing awesome!! She’s has had nothing but good reports from the doctors!! Hallelujah!! She is now 8 months old, 17 lbs, and if I remember right, just over 27″ long!! She’s filling out 9 month clothes and seems comfortable in 12 month!!! She gains every week!! Praise God!! She’s progressing with her tummy time and is really close to rolling over as well as laughing!!
Feeding continues to be a daily struggle. I have tried allowing her to be hungry (holding some feeds) and then trying her with a whole slew of delicious food choices. And with this approach, she really does the best, but even being hungry, her best consumption over the course of a day was 1oz, and obviously that’s not nearly enough. She quickly becomes dehydrated and then it shows up in her heart rate (goes up), and obviously that’s not good. She’s just not skilled enough orally yet to consume enough to make this a viable practice. So unfortunately, we have no oral progress to report, however she has not really regressed either, which is a blessing. We just continue on..slow and steady, trying trying every day, praying our family’s enjoyment of delicious food rubs off on her someday. She’s really a quite a social girl if you can believe it. Even though she is not allowed to go out, and really only sees healthy family members, she just loves being a part of everything!! She loves to smile, cuddle and coo. I just know she will laugh any day now…I’ve had her SOoo close!! 😉 She’s also been getting some nice quality time in with her grandparents, aunts, uncles, and cousins, which has been really special.
Her next appointments are in Seattle, where she will see in addiction to cardiology, neurology and neurosurgery. Neurology will be visiting about her latest EEG and hopefully devising a plan to wean her off of her anti seizure med, keppra, if things are good! Neurosurgery will have her do an MRI and evaluate how are shunts are functioning and discuss the safety of her getting a gtube. For kiddos who will need a feeding tube for a long period of time, a gtube is really the way to go for a number of reasons. Keeping the tube in her nose can create tissue damage over time, as well as create additional challenges to eating, just by having a tube down the back of the throat. The concern with Poppy getting one, is due to the fact that she has her shunt tubing in her peritoneal space already and a gtube (tube that goes directly to the stomach) may just be too great of an infection risk. The last thing she needs is an infection to her brain caused by her gtube getting infected and infecting her shunt tubing etc….not to mention she’s immune suppressed, compromising her overall defense against any infection. Umm…scary!!! But speech, and occupational therapy as well as the transplant team want to double check with the neurosurgeon himself just to hear his take on it. If it was truly safe, she really would benefit from a gtube, so we will be discussing that as well. Cardiology will do an echo, EKG, and monitor for rejection. She is approaching 6 months post transplant, so we may be seeing some dose changes to her meds?!?! And looking ahead to finally getting her caught up on her immunizations. She will have all with the exception of any live vaccines, as her immunosuppression would not allow. She will also be getting the synagis shots for RSV season.
As we jump in the car to begin the 10 hour trek to Seattle, I anticipate the winter weather we will encounter, the 4 mountain passes we will go over, the diaper blowouts, food/drink spills, the potty breaks at any given gas station, the endless amount of coffee I will no doubt consume for both my sanity and for the obvious purpose of staying awake, the anxiety of constantly asking…ok, do I have everything? What if such and such happens, am I prepared? All the meds? What I need to give meds? Extra feeding tubes? All that I need to place a tube? Plenty of feed bags? Formula? Measuring supplies to make formula..Etc…Despite all the what ifs. I am so incredibly thankful.
I am thankful that these piddly pains of traveling are even a part of my life, because if they weren’t, it would mean something different for Poppy and our family. There is not a day that goes by that I don’t think of, pray for, mourn with our friends who have and who are still enduring the worst. It’s something that will always be a part of me. To be so blessed to be back home, functioning as a family, with the biggest immediate stressor being my endless fight with my own household production and trying to find quality one on one time with each of my babies and my husband. Perspective is a humbling gift that, because I’m human, I struggle with every day. All I have to do is put myself back there, where babies and kids of all ages, ethnicities, socioeconomic backgrounds live because they are sick, and right along beside them are their brave parents. Seattle Children’s is a place of hope and miracles, as well as loss and deep and utter sorrow, where God dwells, and time stands still. I put myself back in this place, and then that’s it…what a luxury it is to get to be living at home, together as a family, with our darling girl who is thriving, all by the grace of God. Thank you Jesus.