This week is a big week for Ryan. He needs your prayers! I spoke with the cardiologist and the plastic surgeon today and we are a go for Thursday. Ryan will not only have the Glenn procedure (open heart surgery) but also begin the process of repairing his very unique anatomy! The Glenn is typically well-tolerated by single ventricle kids, but Ryan isn’t the typical heart baby because he has ectopia cordis – his heart is outside his chest cavity. His lungs are slightly compromised – possibly a result of his pulmonary arteries(PAs) being small. To have a successful Glenn, you must have healthy lungs and PAs.
In addition to rewiring Ryan’s heart during the Glenn, the plan is also to have a general surgeon repair Ryan’s diaphragm and put his omphalocele back into his body. The plastic surgeon also hopes to pull the extra skin grown over the last eight weeks over the heart at the end of the surgery.
Driving home yesterday from the hospital, I remembered it was in August, 2008, we found out our third child was going to die. I went through a myriad of emotions – from grief to trying to figure out how to tell people the baby inside me was going to die. How would we explain it to Natalie and Ainsley, just 2 and 4 at the time? Now, here we are six months past the point where the doctors thought Ryan would never be…birth.
But Ryan did make it to birth. In fact, he had a very hectic, but well-planned birth. We finally had a complete diagnosis: Pentalogy of Cantrell with Hypoplastic Right Heart Syndrome. In addition to his heart beating outside of his chest, it is poorly formed. Because he didn’t have a ductus, he didn’t need the routine first procedure – the Norwood surgery – but two weeks after birth, his O2 sats dropped because his pulmonary arteries were too small for proper blood flow so the doctors decided to give him a central shunt.
Ryan stayed on the ventilator for another long and tedious three weeks doing CPAP trials to strengthen his diaphragm. As it got stronger, they talked of weaning him off the oxygen and vent and allowing him to come home – a very foreign concept to us since we were told he wouldn’t come home for up to a year. We were thrilled and terrified at the same time.
Unfortunately, Ryan didn’t wean off the vent and oxygen as planned. Instead, the cor triatriatum membrane in his heart started to close and pinched off vital flow. I walked into the unit one April day to find a team of doctors around Ryan’s bed. They explained he was ‘very sick’, their term for crashing, and he was on standby for the cath lab. They were gracious enough not to tell us they didn’t think his vessels would tolerate a cath and he would need emergency open heart surgery. And, they were gracious enough not to tell us they weren’t sure he would tolerate open heart surgery and we’d be kissing our baby good-bye. We didn’t find THAT out until we all breathed a sigh of relief after a successful emergency cath.
The good news is Ryan’s cath was successful. The medical team’s creative solution (a medical first that we know of) worked and allowed Ryan to stabilize and be extubated. Two days after the procedure and almost six weeks after entering the world, Ryan was able to finally breathe on his own.
Without the tube, Ryan came off sedation meds and suddenly became a responsive, happy baby! We started talking about the ‘h’ word again and officially brought our son home on April 28.
Getting ready to come home…
The next two months flew by. We took that time to get to know our baby on a 24/7 basis and act like a normal family. We had two doctors visits for many of those eight weeks home, but honestly, it was way less than running an hour one-way six to seven days a week to see Ryan. Except for a brief hospital stay for dehydration, we had a pretty uneventful life.
See, like I said, a normal family.
Mid-June arrived and with it the surgery to place the tissue expanders. We had no idea what to expect after the surgery. He tolerated the procedure, but with the addition of oxygen support, so we returned home lugging an oxygen machine. But hey, home is good!
Life changed a lot for us with Ryan connected to a 7-ft. leash. His tissue expanders required twice-weekly visits to the plastic surgeon to inject saline. He was home a total of two weeks before being readmitted for low sats. He was put on high-flow oxygen and has remained in-house ever since.
It has been a long four weeks since his July 28 admission. His O2 sats have been very volatile and after his pre-op cath dipped so low for so long the team suggested I call Henry to come to the hospital preparing for the worst.
And here we are today. Ryan survived his close call, but because we were waiting for his skin to expand, the medical team wanted to wait until his scheduled date for the Glenn.
A recent family visit…
I am feeling much the same today as I did six months ago… a little anxious for the unknown. Thursday Ryan will undergo the Glenn surgery – the second routine procedure for single ventricle babies. It basically takes the superior vena cava (SVC), two of them in Ryan’s case, and connects it to the pulmonary arteries (PAs) thus bypassing the right ventricle all together. So instead of the blood coming up through the SVC into the Right Ventricle and being pumped into the PAs, when Ryan breathes in, his lungs will pull the blood from the SVC into the PAs and then into the lungs to be oxygenated.
I keep getting asked when the doctors will put Ryan’s heart back inside his body so I want to address that quickly. The doctors have no plans to force Ryan’s heart into his chest cavity. Instead, they will place healthy skin over it after the Glenn, perhaps give him a bone graft during the Fontann (at 18-24 months of age) and allow Ryan’s body to grow. The key is that as Ryan’s body grows, his heart will become a smaller portion of his chest and hopefully one day become flush with his body. The heart doesn’t respond well to being pushed or squished so we will simply allow it to sit exactly where it is now.
This leaves us with many questions – what will it look like? What happens when Ryan starts to roll over, walk, run, etc.? We don’t know at this point. It was hard for me to imagine what Ryan would look like with his heart outside of his chest. Now, it is hard for me to imagine what he will look like with his heart inside his chest. We’ll just have to wait and see.
This video is the first view I got of Ryan’s heart. Henry brought it to me while I was still in the hospital recovering from the c-section. I can’t wait to show you pictures post-Glenn of his new anatomy.
We know Ryan is super complex. We know he is a-typical. We know that what is routine for other patients lays him up for weeks. But we also know that from the time Ryan was diagnosed in-utero, the chances have always been slim, but he has continued to beat the odds and surprise the professionals. Please pray Ryan’s body responds well to the Glenn – that his lungs and PAs do what they are supposed to do and do it well until the Fontann.
Comments (38)
Lord Jesus, I ask you to guide the minds and the hands of the doctors who will be manipulating Ryan’s body. I thank you that you are omnipresent – holding Ryan while also holding his parents while also guiding the doctors. Be their eyes Father, and their hands. Give Henry and Leighann as well as all their loved ones that perfect peace which passes all understanding. I thank you that this fallen world is only temporary and that one day we will all receive a new and glorious body with no flaw. I thank You for being Sovereign and that even when we don’t like or even understand Your ways that You know exactly what You are doing. Ryan’s name is engraved in the palm of Your hands. Because of the precious blood of Jesus, Amen!
We are going to spend the evening tonight with the boys praying for your family. Eli really is sad for Ryan in the hospital with all the tubes, he remembers them. We are praying and love you guys!!!
Thanks for explaining all of that, still praying & thinking of all of you! Keep looking up! 🙂 Love the pictures!!
I have goosebumps, I can’t even imagine the emotions you as a mother must be experiencing. Ryan is a strong happy boy and I think the love he feels if what thrives him best.
Is the surgery TODAY? Or this week? Did I miss that part reading? I can’t recall.
Either way, its always a very scary thought for parents to watch their child be so far away from them, hooked on tubes and about to endure scary procedures.
You know that I will be praying and I will put him on the prayer list today on my blog. Ill get the word out a lot and have many other join in on prayer.
You are a good mama…..
I’ve been thinking about your family all week remembering that tomorrow might be the big day! We’ll be praying that things go well and Ryan comes through the surgery and heals quickly. And for you and the rest of your family as well!! I can’t even pretend to imagine what you must be going through but I’m very thankful that we both serve a God who does and that He can hear our prayers at the same time and be everywhere at once!! Hope you have a wonderful day and that the Lord gives you all extra special grace until the surgery is over.
Tyra
Father, thank you so much for Ryan and for his family. We ask that you continue to protect him as you have since before he was even born. Father, you have a plan for his life; I ask that you would comfort Leighann and Henry as they walk through this next step in Ryan’s journey. Please give them a peace that surpasses all human understanding. Remind them of your fulfilled promises as they undergo the uncertainty of what tomorrow holds for them. We ask that you would guide the entire medical team; give them the patience, focus and belief to endure the long surgery process. Thank you for the miracles you have shown through Ryan’s life.
Leighann and Henry-we will be continuing to pray for Ryan and for your entire family.
Love, Marshall & Melissa
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Praying for your family this week. Thank you for the explanation. It was very helpful.
Thank God for making Ryan such a fighter! He’s been so strong and so brave for the past 6 months…braver and stronger than most of us have to be in our entire lives! We’ll continue praying for Ryan and for the rest of the family as he goes through this surgery this week.
Lots and lots of love and prayers for you and your family…and most of all, Ryan! God has His hand on him at this very moment. Have faith, Leighann…love you!
Richelle
You are always in our thoughts and prayers.
wow what an amazing story. I will pray for your son.
My whole hearted prayers are with Ryan and your family always.
thank you for the informative post. ryan has been a fighter and i’m sure he’ll muscle his way through this as well. will be praying for wisdom and precision for the doctors and all the other elements of the procedure to go well.
can’t wait to see post-surgery pix. blessings to you and your very precious family!
Thank you for sharing because I havent been following your blog from the beginning. I will be praying for your family this week and that the Dr. will be wise in all thier decisions during the surgery.
I’m in constant prayer for Baby Ryan and your family! How beautiful your family is
Leighann,
The wave of emotions that flow through you as you are preparing to send your son off for this surgery is so overwhelming and exhausting. Our favorite verse that we held on to as it reminded us of all that we held dear was from Jeremiah 29:11
For I know the plans I have for you, (Ryan and your family)declares the Lord, plans for wholeness and not for evil, to give you a future and a hope.
We had prayed and many with us daily for our family and son just as many are holding you close in prayer. This verse reminded us that God’s plan was laid and perfect.
As you walk forwad with such uncertainty may you feel God’s perfect peace as he speaks in Isaiah 26:3 and 4 for I know you and Henry have placed Ryan in God’s hands.
Praying for all of you
Terri and Family
Leighann,
The wave of emotions that flow through you as you are preparing to send your son off for this surgery is so overwhelming and exhausting. Our favorite verse that we held on to as it reminded us of all that we held dear was from Jeremiah 29:11
For I know the plans I have for you, (Ryan and your family)declares the Lord, plans for wholeness and not for evil, to give you a future and a hope.
We had prayed and many with us daily for our family and son just as many are holding you close in prayer. This verse reminded us that God’s plan was laid and perfect.
As you walk forwad with such uncertainty may you feel God’s perfect peace as he speaks in Isaiah 26:3 and 4 for I know you and Henry have placed Ryan in God’s hands.
Praying for all of you
Terri and Family
Leighann,
We are praying without ceasing for Ryan, the docs and you. I can’t imagine the fear and anxiety you and Henry must feel. You show great faith in your blog and I admire you for that. Hold on to that faith and the God of that faith as you face tomorrow and all of its unknowns. I will be praying hard and long for my precious nephew. We love you all.
I love this littel man so muchand my heart is always thinking of and praying for him. You know that we will certainly remain faithful to pray Ryan through this next step. I will post something later on our blog, probably tomorrow asking for prayers! We love you guys and send our hugs!
Little guy is going to do JUST GREAT tomorrow! You are in brilliant hands and you are ready for it… Brent and I commented yesterday that this is your big week. It seems like this has been on the calendar for so long.
We will keep you in our thoughts tonight and tomorrow.
Till then..
Madeleine, Kirsten & Brent
Leighann, You do know that Ryan’s heart is complex and that this is a very risky surgery for your sweet little guy. However, I know that you also know that our God is bigger than all of this and He understands what Ryan needs much better than any of his amazing doctors. I am praying for peace and comfort for you and your family, wisdom for the doctors and med. staff, and strength for your amazing little guy. You have been on quite the journey and I look forward to seeing the rest of God’s plan unfold for your family.
Blessings,
Faith
I have tears in my eyes.. I have been reading your blogs since about December, and I feel like I know your family so well, even though I have never met any of you. I am praying unendingly for Ryan and your family. Your family will be in my heart tomorrow.
love from Alaska
Hi Leighann,
I really have no words for what you guys are going through. You are really great parents and especially you Leighann are the best mom for Ryan!
We will continue to pray for all of you and especially for Ryan.
Love,
Hans and Evelien
ps: happy belated birthday
We can’t wait to hear about the successful surgery. Go get ’em Ryan!
What a path you guys have traveled! Even though it has not been easy….you have persevered….with never waivering faith….you have been a testimony to me…..you make me ponder, cry and snort with laughter! I love and adore your family….even though I’ve only spent small amounts of face to face time with you. We will continue to storm the gates of Heaven on Ryan’s behalf….and pray that he continues to defeat all odds!!
Sara
Beautiful, compelling story.
We will be praying for precious Ryan, your beautiful family and the medical team. May His strength and comfort overwhelm you all as you wait to hear how Ryan does tomorrow. May the Lord guide the medical team as they help your son. Peace tonight to you all!
Alison and Andy Johnson
(Melissa and Marshall’s friends)
Madalyn and I have been praying for Ryan all day and will continue to do so tomorrow.
Much love to you and your precious family.
Mara
So many many prayers will be going up for you from today through tomorrow.
God is holding that little boy exactly where HE wants him. Rest in that.
I have asked all of my Facebook friends to pray for Ryan, for the Dr.’s, and for all of you. MotherGoose518’s prayer is great.
so what time is the surgery?
I just want you guys to know that we set aside some time tonight at church to specifically pray for Ryan and for your family. I know any and all prayers can help and we wanted to add our voices to the throne of God. May He be with you as you go through the day tomorrow. God bless.
Tara Crooks
I am praying for you and your family and especially your precious little baby. He is sooo strong to have fought this hard and this long. I am so happy and nervous for Baby Ryan. As a young mother, I can’t imagine the pain or the fright that you are feeling. Prayers and Blessings.
-Myah
Leighann,
You, Henry, Ryan and the girls are in our thoughts often. You’ll be on our minds all day tomorrow, as we wait anxiously for your updates and news that Ryan’s surgery is successful. Big hugs to you all.
–Elana and Blake
Our whole church in Jonesville, Louisiana took him on our hearts when he was born. We will be praying for you tomorrow, as we have already been doing. When one member of the body suffers, we all suffer and we are trying to hold you all up in our arms of love and take away some of your burden with our heartfelt prayers. God knows our every need and he said “suffer the little children to come unto me”. He will be right in that operating room, guiding the hands and comforting Ryan, as well as you all. I fully believe that God wants to get glory from Ryan’s life and you have given him all the glory thus far.
With all our love and prayers,
Thanks for taking the time to create a timeline of your sweet baby’s life for new people like myself. I pray that God will wrap his arms around you and fill you with peace during surgery.. I pray also that God will use the hands of the surgeons to heal him completely. He is a beautiful baby and God has a big plan for his life..
Psalm 121:4 He who watches over Ryan will neither slumber nor sleep.
I know you are feeling butterflies, highstrung exhaustion, and trust in God and the doctors in doing what is best for Ryan. You cannot be in there watching but our God has not taken his eyes off of him the entire time. We all prayed together as a family this morning for your family and the team of doctors. We will be thinking and praying for you throughout this day.
Love,
Erin and John
Just clicked over from MckMama–prayers are with you today. Praises for Ryan’s life! =)