Ryan and I headed downtown yesterday with the help of a friend (due to my ankle) to get his tissue expanders filled. This is the first time we’ve taken the trip as he was ‘in-house’ during the earlier expansions. In addition to the feeding pump, the diaper bag, and my pump, we now have to drag an oxygen tank with us. It’s crazy all the equipment this little baby needs.
We arrived at plastics late (this should not surprise you, I know I stopped stressing about DC traffic some time ago), but they were gracious not to give us any grief. We spoke with Dr. B about Ryan’s expansions and he is optimistic they will have enough skin if we keep our schedule of twice per week fillings.
After getting poked in each side, we wheeled Ryan down to cardiology to be observed for the next hour. Because we have no idea how Ryan will react as the expanders are filled, Dr. D feels more comfortable observing him for a little while after each session.
Ryan breathes with his accessory muscles which could be affected the heavier the expanders get so we are curious to see how things will be going forward.
Dr. Donofrio and I spoke a little about the Glenn procedure as it relates to Ryan. I asked her if his chances are any better than we talked about pre-birth (slim to none) and she just shook her head. She admitted that the Glenn was her biggest fear and our greatest hurdle.
For the Glenn to be successful, the baby has to be able to breathe powerfully enough to pull the blood into the lungs through the pulmonary arteries – with Ryan’s chest wall compromised, Dr. D in unsure if he will have enough strength.
So, our biggest prayer is that the Glenn will be successful. If it’s not, Ryan will continue to have his shunt replaced as he grows and will need a heart transplant by the time he is ten. It’s not a great option, but it’s an option.
I’m a little bummed after having that conversation. It’s nice to live in denial and not think about how fragile Ryan truly is. But, I know nothing changed during that conversation. Ryan is who he always has been. And, God did not change during that conversation either. He is the same as He always has been as well. We pray now that He will continue to intervene in the life of our little miracle.
(c) 2016 Leighann Marquiss
Comments (14)
I will keep praying….Lori Musacchio
wow. so overwhelming. I am glad we have a God we can unload our troubles and worries. I will keep praying and trusting God. Love ya beebs.
WOW! Praying still.
Paula S
Praise God that He is bigger than us! We continue to keep your family in our prayers. Jason, Stephanie and family
Continues prayers for your sweet family!!
We’re continuing to pray. We’re praying for the upcoming Glenn procedure to be successful.
We praise God for all He has already done. Our prayers are with you continually for the upcoming procedures. May God especially bring strength to you, Ryan & the entire family! Much love, Marmi & Pop
We praise God for all He has already done. Our prayers are with you continually for the upcoming procedures. May God especially bring strength to you, Ryan & the entire family! Much love, Marmi & Pop
We praise God for all He has already done. Our prayers are with you continually for the upcoming procedures. May God especially bring strength to you, Ryan & the entire family! Much love, Marmi & Pop
It is so much easier to live in denial, but that’s how our human brains work. We tend to push back the stuff that weighs on us, especially when we have so many other things on our minds. I was the same way with Polly. I guess I knew it then, but it didn’t truely sink in until a while later how close to dying she really was a couple times. I know God gave me a sense of calm or peace to deal with it all…and to keep a little bit of sanity. I am thankful to have a great and loving God that helps us through such trials! He is awesome!! Love and prayers to you all, Leighann!
Richelle
We’ll keep praying for Ryan and your family…
Hard to keep it in perspective when you are so emotionally attached, thank you God for making moms that way, but you know the truth both ways, secular and Godly and he will provide you with everything you need, as always we will continue to pray for you.
I had no idea that the Glenn was so unsure for Ryan. God ses the big picture and thankfully he only gives it to us one puzzle piece at a time. He is in control and as you said, He knows the outcome. I will be praying for miracles of healing, wisdom, peace, and strength.
Lots of hugs,
Faith
i have been away from internet at the camps, only sporadic checking… so I am catching up. so sorry about your ankle!!! And I will be continuing to pray for this procedure!!!! Hugs