Our trip to Seattle was very special in a lot of ways. It was full of reminders of God’s grace, goodness and provision. We were reminded of how God has truly provided for our family in every way, but we were reminded especially this trip by the people that He surrounded us with during our time in Seattle. These people who shared the touch and go days right along side us…who were also living their trying situation of having their sweet babe critically ill, needing/wanting to be their with them, by their side, all of the time…. while also trying to also be there to love on and support their other children and spouse through it all. ‘If only you could be in two places at once,’ I used to say all the time. A bond we will hold forever-a bond no one else could or should ever have to know–though a true blessing in its own way. We were beyond blessed to be able to see many of the families this trip, as God clearly orchestrated it all. Nothing was really planned-it just happened… God made it happen and it was really good.
We also got to see Poppy’s old broken heart!! The transplant team coordinated with pathology, and it happened!! They still had her old heart!!! The pathologist was so gracious and kind-even eager to share with us the complexities of her old heart. He pointed out her minuscule left ventricle, faulty tricuspid valve, and even told us about some fibrin tissue that was found in her right ventricle. He said that the fibrin tissue was definitely out of the ordinary, and most likely contributed to her heart failure as well. What a chance of a lifetime?! I wasn’t sure how we would do in there…actually getting to see her old heart with her with us…emotional…heavy… to say the least. But it ended up being a very cool experience!! We feel very blessed and privileged to have been able to see it and visit with the pathologist about it! He also explained that they have started keeping transplanted organs around longer and longer for teaching purposes. Within the diagnosis of HLHS, there are soooo many different variations-each is really unique in its complexity. So they can pull out Poppy’s, and her friend Adrian’s, among many others, to show/teach different variations of HLHS! Soo cool!! What a gift in so many ways. Thank you Jesus-You make everything good!
Poppy saw Transplant Cardiology for routine follow ups. Her labs, echo, and all other numbers looked great! Praise God!! She is 18.3lbs, and 28 inches long!! She has slowed down a little on her weight gain, so they increased her total volume by 50mls/day. On one hand, I know she needs it, and I want her to get all the nutrients she needs to be healthy, but when you’re trying to wean from the NG feeding tube, it’s just a bummer, because now this is more volume she’s going to have to be able to eat in order to pull the tube!! Ahhh!! So we do it, and this is just part of tube weaning…lol…just when you think you’re making a little progress, they need more volume to grow–it’s just how it goes. I pray for patience and perseverance multiple times a day for this feeding challenge in particular. It is a challenge that will take lots of time-all in God’s time.
Poppy had been acting inconsolable and then sleepy and inconsolable and then sleepy since we had arrived on Sunday…and had been having periods like this in the weeks prior, but not really consistently, so I had written it off as teething or being tired. By Tuesday, it was definitely becoming more frequent and harder to calm her down and then all of a sudden she’d be asleep- very out of character for her, even though I know babies can do this. So I decided to call Neurosurgery just to see if they thought it was worth bringing her in, since we happened to be in town for other appointments. They said definitely bring her in. Upon arrival, they checked her shunt settings, and sure enough, one of them was off. They ended up doing a haste MRI to see what her ventricles were looking like. They found them to be a little more enlarged than last time, but still within the normal range for Poppy. So they set her shunts back to where they should be, and we were on our way. We have no idea how it had gotten off, but were praising God that we were there and able to be seen!!! He just orchestrates it ALL!! Soo incredible. She seems to be a bit better since the adjustment- Praise the Lord!!
Ophthalmology found that her degree of eye crossing has increased, but that with her correction, she’s actually seeing within the normal range for her age!! They are still trying to figure out the specifics of the eye muscle surgery being coordinated with her heart cath/biopsy. I think it’s a case of, we will know it’s happening when it’s happening. There is a lot to coordinate and everyone is really trying to make it happen-it’s all we can really ask for.
On the way home, I missed a call from Dr. Albers (one of her transplant doctors). She had asked me to call her back to visit further. In my mind, I was thinking it was regarding the eye muscle surgery coordination, and I had all but convinced myself that they had decided against it at this time. I nervously played phone tag all day, and was finally able to connect with one of the transplant nurses, Pam. Dr. Albers had relayed her the information she was wanting to discuss. It turns out, the phone call wasn’t at all about the eye muscle surgery, in fact it, she was calling about Poppy’s EKG she had done in clinic. An EKG is a test where they hook up leads to the chest and get a really close look at the heart rhythm- it indicates what part of the heart is triggered when- how effectively it is pumping, and is printed out on a strip. Poppy’s EKG has changed. It showed that Poppy was in a bundle branch block rhythm. Most people have a normal sinus rhythm. Since her new heart, she’s always had really close to normal sinus rhythm, and if not, it’s been because her magnesium was low. Since her labs and everything else looked really good, it would be less likely that it’s a sign of rejection, because rejection is most commonly observed when more indicators are “off.” However, it is still likely enough that it is rejection, that they will have Dr. Hardy repeat the test this week, to see if she’s still in that rhythm. If she is, they will move her 1 year post transplant cath/biopsy that would have been end of May/early June, to later this month. With the biopsy results, they will be able to determine if she is in fact, in rejection and to what degree of rejection if she is, or if she isn’t. I guess you could imagine, my heart just sank at this news. Reality hit that yes, indeed, with heart transplantation, you really are trading one set of life long health challenges for another. A heart transplant, while a true life preserving miraclulous gift, is not a cure for heart failure- it simply buys more time until you need another heart, and the constant monitoring and nasty anti-rejection drugs are all part of it. Rejection can be apparent, and it can be sneaky-it really just depends. She’s been doing so well, that a concern like this just kicks you in the gut, as you remember that your child is medically fragile, and that this is part of it-this is the kind of stuff they taught us about in training, and told us to half expect at some point or another. As you can guess, we are anxiously awaiting her appointment with Dr. Hardy. The possibility of heading out to Seattle again this month and what that looks like is daunting. We are constantly trying to give our concern and worry to God-ultimatley He has this, we are just along for the ride. He has called us to be parents to our sweet babes, and this is what we do-we do whatever it takes, and pray and pray and pray countless times over for His grace and peace to overwhelm us and take over…for His guidance and wisdom over the situation to be apparent to us as we walk through life with Him. We would love your prayers for Poppy and our family as well.
We are so very blessed to have your prayers and support and with that, also ask for your prayers over Adrian and his family, as well as another one of Poppy’s friends, Bowen and his family. Adrian, as you know, is very critically ill. He had HLHS, was Poppy’s neighbor, days a part in age. He had a time of doing fairly well-he was even on the recovery floor learning how to eat and getting ready to go home at some point- and then he got sick, and it sent him straight up to the CICU and he’s been there ever since. He waited a long time for his heart. But it finally came. His kidneys suffered greatly during the wait, and soon after his heart transplant, was found to be in renal failure and put on dialysis. He has had a very tough road. He and his family have been through the ringer, and he continues to have great challenges. Please hold them closely to your heart and keep them in your prayers.
Bowen is from Butte, and is just a few days older than Poppy. They were actually neighbors as well for a time! He has already had an open heart surgery, and is preparing for his big repair in just a few weeks. He has recently come down with a cold, and his oxygen saturations are such that he has been admitted locally in order to be on the high flow oxygen that he needs. Please pray for a speedy recovery so that he can be good and well for his upcoming surgery. Please also, keep him in your prayers in the weeks ahead, as his family anticipates and endures another open heart surgery for their sweet boy.
Thank you all for your fervent prayers for our brave heart warriors and families. It truly means so much ❤️
” For this reason I bow my knees before the Father, from whom every family in heaven and on earth is named, that according to the riches of his glory he may grant you to be strengthened with power through the Spirit in your inner being, so that Christ may dwell in your hearts through faith–that you, being rooted and grounded in love, may have strength to comprehend with all the saints what is the breadth and length and height and depth, and to know the love of Christ that surpasses knowledge, that you may be filled with all the fullness of God. Now to him who is able to do far more abundantly that all we ask or think, according to the power at work within us, to him be the glory in the church and in Christ Jesus throughout all generations, forever and ever. Amen.”