Poppy finished up the Intensive Feeding Program a week ago, and her results are more than we could have hoped for. We were praying by the end of the program, that Poppy would be eating more by mouth and be more comfortable and confident with swallowing. If she came home from the program eating half of her calories by mouth, we would have been thrilled!! But what she was able to do, was seriously miraculous! She was able to eat most of her daily calories by mouth, with the exception of liquids, AND maintain her weight! There was no issues at all with her pushing food away, she accepted everything we tried giving her!! We were a little apprehensive before the program started, that she may not quite be ready, with her GI issues only recently being resolved, still being on a super hypoallergenic formula (EleCareJr.), and such a strong gag reflex and protective swallow, we weren’t sure how she would do. God’s hand in all of this is so apparent…the timing of her tonsils and adenoids coming out contributed greatly to her success, as well as her rock star recovery for her to even be healed up in time to do so well! All God. Brad, Karen, and I literally sat there just beaming with tears of joy. Our girl surprised everyone! Thank you Jesus! Since completing the program, she’s starting to eat faster (now down to 30minute meals) and up to 4oz in a single sitting!!!! I mean, for a girl who may take 1 tablespoon prior to the program, and get hiccups right away….it’s just incredible. Tears of joy….our baby girl is eating. I can’t even express the weight of what this means to us. We will follow up with Karen (OT) and Kim (nutritionist) remotely at 2 weeks, 5 weeks, and 10 weeks post program to track weight and labs. Right now, we are trying to find the sweet spot as far as fiber goes, and also add in some high calorie foods to keep her weight in check. Now she just needs to get more comfortable drinking fluids. 😉 Thank you Lord for your wondrous work in Poppy!!!
The results of Poppy’s sleep study showed severe obstructive sleep apnea. For kids her age, the normal number of episodes per hour is less than 1, adults less than 5. Poppy averaged 30 episodes an hour. An episode can be anything from a dip in oxygen saturations, high c02 (not exhaling fully), to reactions in the brain to ‘wake’ itself up to catch a breath….Dr. Wrede said she’s seen kids with a higher number of episodes an hour, but that 30 an hour is indeed severe and warrants follow up sleep study when we go back in October. Since having her tonsils and adenoids out, she has weaned off of oxygen at night (at least at sea level), no longer snores, and swallows her food without gagging!!!! Praying that the higher elevation back home doesn’t require oxygen again, and that her follow up sleep study will show great improvement and not require cpap or any other interventions!!
On Wednesday, Poppy was finally healthy enough to have her routine annual cardiac cath with biopsy to monitor her heart for rejection. She was also able to get her sedated MRI of her head. The MRI will hopefully help her Neurologist, Dr. Kollros better understand what kind of seizures Poppy keeps having, and where they are coming from which will help with prescribing an anti seizure medication that will keep them at bay. She’s currently on Keppra and Vimpat, and recently had an increase on her Vimpat dose because of a break through seizure she had during our stay in Seattle. We are still waiting on the results of the MRI. As far as her cath results go, Dr. Rubio said things looks beautiful! Her coronary arteries and pressures are normal!! Woohoo!! Hallelujah!!! He said he noticed some fistulas forming, that may need to be coiled off in years to come if they should become a problem, but can be totally normal in transplant kids and even elderly adults. Her pathology report from her biopsy indicated ZERO rejection!!!!!!!! 🙂 Thank you Jesus!!! We were so nervous….we could not be more relieved and excited to hear this news!!!! Woohoo!!!! Next cath will be in 1 year, unless something abnormal pops up! We will head back in October for Neurodevelopmental, Sleep study, Otolaryngology, Transplant Cardiology, and possibly Neurosurgery follow ups.
Being back at the Ronald McDonald House was such a blessing in so many ways. We would not have been able to get Poppy the support she needed with her appointments this summer without it. We saw some sweet friends who have found themselves back fighting again, and made new clearly divine friendships as well….It’s such a humbling place..kids and their families just trying to fight their child’s illness and do their best to function as a family…it’s challenging and heart breaking to watch and reminisce of the days when we were there not knowing what each day would bring and trying so hard to cling to God to keep it together…it’s so hard 😦 Only by God’s grace alone is it even possible..and even then it’s beyond my own understanding. He truly grants His divine peace and it’s indescribable and the only way to bear…Many many hugs and prayers for those sweet families so near and dear to our hearts that are living this…a humble reminder that anything can happen..anytime.. and never to take being at home surrounded by family and being in decent health for granted.
Today has been joyous, humbling, and heavy all at the same time. Today we got to head home to Montana to spend the remaining part of summer at home!! We are free from Seattle Children’s Hospital and appointments for the time being!! Oh sweet freedom!! Hallelujah!! Home just in time for harvest, my favorite time of the year in Montana! 🙂 To get to come and be home is truly an incredible gift.
Today also weighs heavy as we think about what life would be like if we hadn’t lost our baby girl back in February at 15 weeks gestation. If things would have gone as ‘planned,’ we would have welcomed our Dahl baby #3, Charley O’Sullivan Dahl to our family today….We were 17 weeks when we found out that our precious baby girl went home to be with Jesus…it’s been heavy on our hearts and minds ever since we learned of her passing, and especially today…all day. We named her after an ICU fellow who God used instrumentally, among so many others, in saving Poppy’s life, and after Pastor Chuck Swindoll whose sermons came as great comfort in the days and weeks surrounding our loss. Her middle name after a very special nurse who was Poppy’s nurse the day we got the call that Poppy was getting her heart. We think and dream of our Charley girl often. We still hurt and a part of us always will miss the little girl we didn’t get to know and raise with Crosby and Poppy, but we trust God and His sovereignty..Life is so precious. We can’t wait to meet her one day in paradise…
Please pray for families who are enduring loss or a health battle with a loved one…may the Lord hear our prayer and grant those who are hurting, grieving, and fighting His perfect peace that surpasses all understanding.