Almost exactly a year ago, we loaded up our family for Seattle. We had packed for the best case scenario of being gone 6 weeks. We had left the apartment cleaned and ready for our new baby girl to arrive. We didn’t know what would come, but knew that God’s will would be done, and though anxious, we were encouraged by the love, prayers, and support of our family, friends, and community. God had already shown us that He had all in His hands, and surely did we feel His peaceful presence with us.
Well, you all know how the story goes. We did not come back in 6 weeks, in fact it was more like 8 months. After 9 days on ECMO, brain bleeds, stroke, months of open chest, countless blood transfusions, heavy duty IV medications, numerous trips to the OR, a heart transplant, loss of her left big toe from clotting issues, a diagnosis of Hydrocephalus, and numerous vp shunt revisions, resulting in 2 permanent shunts, we got to bring our whole family home to Montana!! No words can fully describe the feelings we felt and still feel to get to be here- a true miracle among countless miracles we’ve experienced this past year.
Poppy is 11 months old today. She is here with us. Her new favorite thing is playing in the bath!! She loves to splash her arms and kick her feet and gives mommy an amazing upper body workout at the same time! She enjoys her food and continues to work very hard on her feeding. She has just cut her first tooth!! Though her physical development is a little slower in progression, she has come a long way, and she is getting stronger every day! She is the sweetest most content and gentle soul I know. Her smile is the most precious part. She is pure joy!!
She is alive, thanks to our Lord and to the dear family, who in their overwhelming grief of losing their precious child, decided to give the gift of life. For that, I to this day have no words. She would not be here with us without this priceless gift. We have the privilege of experiencing life with her at home…we get to experience our sweet girl and who she’s becoming..growing and learning new things every day. Thank you Jesus for this time. We pray we never take it for granted.
Congenital Heart Defects affect many. 1 in 100 babies born will have some kind of heart defect, ranging from minor to severe defects. Of the 16 babies we consider to be a part of Poppy’s cohort, mostly all single ventricle defects, 5 of them did not make it to their first birthday. Of the 11 who are still with us, 4 have transplants, and most will need one someday. February 7-14 is CHD Awareness week. Please encourage expecting and new parents you know to ask lots of questions at ultrasounds and be sure a pulse ox screen is done upon birth. You would be surprised how many babies in this cohort were not prenatally diagnosed. Many were caught by pulse ox screen. CHDs affect so many, you can spread awareness of this type of heart disease by wearing red this week.
I mentioned Poppy had numerous blood transfusions…I honestly have no idea how many. For Poppy, getting blood meant decent numbers for a little while. Her heart rate and respiratory rate would come down to a better place, the blood flow to her brain and kidneys would improve a little, and maybe for a few hours, she’d look a little less pale. Blood is such a necessary gift for those who are critically ill, if you can donate, please consider. What better time than to give during Heart Month!
As I write this, we’ve just conquered Roger’s Pass, as we are headed out to Seattle for routine follow up appointments. She will see Transplant Cardiology and Opthalmology as well. We are hoping to have an answer regarding her eye muscle surgery. And, the most exciting part by far is that we just may be able to see Poppy’s old heart!! Pathology still has it as far as we know…we are praying it works out!! How amazing would that be?!
‘Rejoice in The Lord always, and again I say rejoice!’