Wow!! How did this happen?! Our sweet baby girl is 10 months old already!!! In some ways, the past year has seemed like it has lasted an eternity, and in the same way, it seems like it has flown by. It’s been filled with so many ups and downs, trials and unknowns, miracles, and endless blessings. We have gotten to see our sweet girl blossom and witness The Lord at work in everything. Pretty overwhelmingly amazing.
At her Seattle appointments this past week, Poppy is 17 lbs 14oz. and just over 27inches long. 19th percentile in height and 37th percentile in weight. She continues to LOVE her new heart!! Praise The Lord!!! Dr. Kemna (transplant doc) and I got to visit about how her med schedule will change when she’s 1 year old and it’s soo exciting!! At 1 year of age and if she continues to do well, her transplant and blood pressure meds can be cut from every 8 hours to every 12!! That would mean instead of a 6am, 2pm, and 10pm, she would go down to 6am and 6pm!!! I can hardly wait!! 😄 Also, she saw neurosurgery and her brain and shunts look amazing!! And so does she!! Poppy also saw Ophthalmology and was diagnosed with Esotropia (crossed eyes). Her doctor was hoping the glasses would correct this, as well as help with her extreme farsightedness, however, her eyes are still crossing fairly substantially, even with her glasses. Her eyes won’t straighten out on their own over time either. The only way to correct this is eye muscle surgery, and if done before 18 months, there is a chance at gaining back her depth perception, although not guaranteed. If we wait until she’s a little older to straighten them, there would be no chance at depth perception. Her doctor said that obviously this is the least of things in comparison to all that she’s been through, so deciding to do it now or to wait are both very rational decisions. Needless to say, we were a bit surprised by the talk of eye surgery, but are so thankful she was seen this trip by her fabulous ophthalmologist!! Brad and I have prayed and talked about it, and are also asking for the transplant team to weigh in on their end. So far, we are inclined to do it sooner than later, in order to try to gain back her depth perception, but…? It’s truly a case of not if, but when….at some point she will want her eyes straightened and why not try while she has a chance at depth perception…if we wait until she’s older, she will absolutely not have depth perception. We continue to be in prayer and communication about the risks and benefits of it all. We will discuss with her Ophthalmologist again in February.
Day to day…she’s really trying hard to sit up. She is now reaching for toys during tummy time, rolling over by herself is still a work in progress. She is becoming more and more chatty everyday, and is also enjoying feeding herself bits of thickened purée by spoon and getting really good at her chewing!! We aren’t able to count any volume yet, she’s really just getting a spoon or 2 each sitting, but we are so proud of her!!! Totally a MIRACLE!! Thank you Jesus for this feeding progress!! Slow and steady with this girl 😉 She is really doing awesome! We could not be more thrilled! 😊
On another note, please continue to pray for dear sweet Adrian (Choo Choo). Though he got a new heart, he is in kidney failure and is continuing to struggle. Please keep he and his family close to your heart. He has been at Seattle Children’s his entire life, and is nearly 10 months, still in the CICU. The pain and exhaustion I saw in his momma this last week weighs heavy on my heart. Adrian and Poppy are just days apart in age….I remember what it was like in to be in her shoes…everyone else’s babies were holdable, getting ready to go home, or at home with their families and as happy as you are for them, it hurts just as badly, because your baby is very sick and not holdable and critical….every day is touch and go and the word ‘home’ is not even in your vocabulary….I’ve been tearing up just remembering ever since I saw her…my heart aches for her…all I can think about is a song by Citizens called ‘Oh God.’ It was a song I played constantly during Poppy’s time in the CICU.
‘Oh God’ by Citizens
In the valley, Oh God, you’re near
In the quiet, Oh God, you’re near
In the shadow, Oh God, you’re near
At my breaking, Oh God, you’re near
Oh God, you never leave my side
Your love will stand firm for all my life
In my searching, Oh God, you’re near
In my wandering, Oh God, you’re near
When I feel alone, Oh God, you’re near
At my lowest, Oh God, you’re near
Height nor depth nor anything else
Could pull us apart
We are joined as one by your blood
Hope will rise as we become more
Than conquerors through
The one who loved the world
Praying for God’s healing hand to touch Adrian and for His loving peaceful presence to overwhelm his family.
‘Be joyful in hope, patient in affliction, faithful in prayer.’ Romans 12:12
Thank you for your fervent prayers!! Wishing a blessed new year to you all!! ❤️