I received an email today from my sister and thought maybe some of you are wondering the same things. Here are her questions and our answers:
Were the doctors optimistic when they explained the situation to you?
The doctors see hypoplastic ventricles often at Children’s. They tend to see it more with the left ventricle, but it is actually better to have it on the right. The reason is because the left ventricle is the work-horse of the heart and when you try to rewire the right to do the left’s job it doesn’t last nearly as long. Rewiring the heart to do the RV’s job is easier on the heart in the long run. Having said that, in the general population this is a rare congenital heart defect. So what is ‘common’ at Children’s is still quite uncommon. So, yes, they are optimistic with the caveat of having to also put the heart back in the chest. Additionally, this is a medium-term (30-40 yr.) fix. Ryan will need further heart repair later in life.
Did they have a “plan of attack” when they talked to you?
The plan of attack won’t come any earlier than later this week. His heart may not be the first thing to get an operation so we are waiting to see which specialist will go first.
Can he sustain life til the first required surgery?
As far as his heart goes, they don’t see any reason he can’t live until the first surgery around 4-6 months. There are multiple things going on, but strictly speaking about this defect, there isn’t any instability at this point. Having said that, these situations are fragile and can change at any moment. Currently, Ryan is stable.
Is there a surgery that is needed ASAP?
With a normal Fontan process, there is a first surgery, called the Norwood procedure. In Ryan’s case, he doesn’t need the Norwood and therefore gets to skip to the second surgery which doesn’t take place until 4-6 months of age. So, there is no need for any surgery ASAP for the HRHS… there are other heart problems that Ryan faces i.e., pulmonary stenosis, and the docs will get together with us this week to talk about other surgeries that may happen sooner than later. We don’t have a definitive answer on this yet.
How are Henry and Leighann doing emotionally?
We are certainly disappointed that Ryan’s heart is not normal. In fact, he has quite an unusual heart, i.e., HRHS, absent PDA (ductus), an additional superior vena cavae, pulmonary stenosis, and tricuspid artresia (a missing valve). So, we are facing an uphill battle. However, this is not new news for Henry and I. The cardiologist has been clear from the beginning that she supsected the right ventricle was smaller than normal, she was waiting until birth to confirm it. We were hopeful it was smashed against the sternum and not severely underdeveloped. We talked at length about the Fontan procedures pre-birth so Henry and I have some familiarity with it. This doesn’t mean we aren’t affected by the news. Honestly, it’s a big downer. But on the other hand – we don’t feel the heart is any worse off than we were led to believe. The newest information for us is that one of Ryan’s pulmonary veins is small, he doesn’t have a tricuspid, and his stomach is exposed.
In short, we were on a little high coming out of the birthing situation and Ryan making it through the first day. We took a few days to celebrate his life, the answer to prayer that he made it this far, the little things God put in place to make that happen. We are now back to reality – our son has a heart defect. He is a heart baby, we are a heart family. We will have these ups and downs throughout this whole process. It will be a long road. While this saddens us, we know deep down that God is in control. There is a peace that passes all understanding, as many of you have prayed. God formed Ryan in my womb. He is not surprised by the latest news. This is not a sprint, but a marathon – a marathon with many hurdles. Ryan did great coming over the first hurdle and he’s hitting little milestones as we speak. His ventilator is on the lowest setting. He started today on breastmilk through a tube to his stomach (yeah, all this pumping is not for naught!). His color is good. We are simply taking one day at a time. Yesterday was a low point, but we will get through this. We ask for continued prayer; for Ryan, for the doctors, for us. Henry and I are discussing now how to incorporate the two hobbits into the picture. We ask for prayers on that front too; that we would have wisdom in telling them what’s going on, introducing them to their brother and figuring out logistics for visiting, etc.
God is good, all the time. 🙂
Comments (26)
I love you! Thank you for being transparent. I can’t imagine being in your shoes and I can’t imagine handling it better than you if I were. Yay on the breastmilk. Time for mama power!!! Pump mama, Pump. Praise the Lord for the ventilator setting. Go ryan!
Hey,
my friends and I are praying for you guys. Thanks for the updates. I love you guys. You guys are soo brave. I’m praying that the Lord will use you guys to bring glory to his name.
Praise God that Ryan’s breathing is improving, and he is getting breastmilk! You are right, this is a marathon, and I will pray for your strength on this journey. You, Henry, and all your hobbits are in our prayers constantly.
” Therefore, since we have been justified through faith, we have peace with God through our Lord Jesus Christ, through whom we have gained access by faith into this grace in which we now stand. And we rejoice in the hope of the glory of God. Not only so, but we also rejoice in our sufferings, because we know that suffering produces perseverance; perseverance, character; and character, hope. And hope does not disappoint us, because God has poured out his love into our hearts by the Holy Spirit, whom he has given us. ” Romans 5:1-5
Persevere, and have hope. He is with you.
Thank you so much for sharing. We are praising God for the hurdles He has helped you overcome and praying for the rest of your marathon. We will specifically be praying for wisdom in introducing your two little hobbits to their little brother.
We are continually thinking of you and praying for you. We are so happy Ryan is now able to get breastmilk. We are also pleased to hear the ventilator is at its lowest setting. Thank you for the updates. We will continue to pray for the upcoming hurdles.
-Brent and Julie
We are praying for precious little Ryan…and for you guys as you continue on this journey. Rick and I go to IBC with your mom (Leighann) and little bro (who we love and adore). We also are a “heart” family due to our little guy Aron (HLHS) who just turned 2 in Jan. All of Aron’s procedures have been done at Children’s National….you are in very good hands with the physicians and staff there. Just wanted to say hello…let you know we are praying…would love to be a sounding board if needed. Praising God for your beautiful miracle boy!
hey leighann and henry,
I’ve been praying for little ryan as often as I think of him… which is quite often. I’m so glad that he’s breathing more on his own. Could you have Henry call me about wednesday? i’m planning on coming down and doing whatever you need me for on that day…. love you all.
katie
thanks for sharing.
we’ve been praying for you guys. ka especially wanted to make sure we prayed for baby ryan tonight during her bedtime prayers.
thank you so much for sharing your heart with us and your ups and downs. Thanks for sharing all this information and letting us have the privilege of praying for you all. HUGS…
so many praises!!! thanks for sharing the details. and thanks for sharing your heart. we are praying, praying, praying!
Praying for you to have wisdom as you bring your children into this setting of your new little Ryan. I am praying for God to prepare their little hearts for what he wants them to hear and how he wants them to respond to Mommy and Daddy and Baby Brother. Good news on the breast milk, praying that makes him stronger with each little meal. And great news on the ventilator!
Sarah
Found your blog through a friend of a friend…from one heart family to another – we’ll be praying big!
Thanks for sharing! I’m so glad to hear about the milk and the breathing!! That is awesome!
We will be praying for the girls and the transition to having a very special brother!
Leighann and Henry,
Thank you so much for taking the time to keep us all up to date. It helps to know the specific prayer needs. Your baby boy is Beautiful and a precious gift from God! And yes, God is good all the time! I am praying that God will hold all of you close and give you the strength you need on this journey. Isaiah 41:10 “Fear not, for I am with you; Be not dismayed, for I am your God. I will strengthen you, Yes, I will help you, I will uphold you with My righteous right hand.” May you feel the love coming from all of us that love you! May God bless you all!
What a blessing from God to have “Sara” and her family come into your lives. Sara, “maybe you are here -at this point in your life as a ‘heart’ family – for such a time as this.”
Leighann and Henry, I can only imagine the blessing you will be to those who travel this path behind you.
Praying, praying, praying.
To Sarah Joy
The big sisters are doing great. They are good girls.
They are luck to have such a good mama and daddy. Ryan will be in good hands when he gets home.
You guys inspire me with your strength, praise God, he gave Ryan just the right parents.
Thank you so much for being so honest and real in your updates about your precious Ryan; what a sweet boy. God DID give him just the right parents and He gave you just the right son. We are continually praying for you guys.
Love, Melissa & Marshall
Thanking God for such a faithful family!
Leighann, I am a stranger who found out about you through Maggie. I am so, so sorry about what all of you are going through. I know something of your journey and will keep little Ryan in my prayers. God bless you all.
Love, Jean
We continue to pray for you, little Ryan, and the doctors. Your faith in the Lord’s goodness and His control in this situation is inspirational.
Henry and Leighann,
I’m Johanna’s sister-in-law. I just wanted to let you know that you all are in our thoughts and we are praying for you every night. It is evident that your faith is strong at this time. God IS good..all the time, and His way is perfect! Ryan is His son who He has given to you here on Earth. Wow…He must think so highly of you both to entrust you with such a blessing. Your hobbits are adorable, and I’m sure they will be great big sisters! Thanks for taking the time to post updates.
Praying for you!
Love,
Carmen Davis
You don’t know me…but I’ve been following your story and I just want you to know that I have been praying for your family, and especially for your precious little boy! He is such an amazing gift from God! Continuing to pray for strength and wisdom for you both, and strength and healing for your amazing little son! Praising God that you had some good news today mixed in with the challenges!
Jea and I continue to pray for Ryan, the both of you, and your little girls. Your faith and trust in our Lord is truly encouraging.
I ran across your comment on my blog again this morning and it was a great reminder for me to check on you guys and to be praying. I am praying for wisdom for the doctors, strength for Henry, and peace for mom and dad. This is a tough journey you have begun, but God is good and He is in control.
Heart Hugs,
Faith Mahoney (Maggie Jane, 22 months, HRHS, DILV, TGA, IAA)
I am sure your life is all about questions and answers. Your questions, doctors questions, friends and family questions. Everyone looking for answers for how to best help Ryan and your family.
Questions and answers that the Lord already knows. May you rest in Him and know that so many are lifting your family up in prayer as you seek His wisom in all of these questions and answers.