Birthday

Quick update. We have a birthday and a plan! Luca will be born via c-section first thing in the morning on August 26th… aka 4 weeks from now (aka basically tomorrow). All of the doctors involved have met and planned for the c-section at 37 weeks due to my gestational hypertension (thankfully all tests came back negative for pre-eclampsia) and to have the team of doctors, surgeons, transporters, etc. ready and waiting. My OB has promised that 37 weeks is enough time for Luca’s lungs to develop as good as possible to prepare for the multiple surgeries. He has been growing as he should and is otherwise healthy, so he should meet the 6.5lb weight requirement for surgery by that time.

The neonatologists met with me separately from the OB and went over their role. They will have a team in the OR to stabilize Luca and pay special attention to his breathing. Upon delivery, he will be started on IVs immediately to administer a drug called PGE, which keeps circulation in the baby’s heart similar to the way it was in utero.  A common side effect of this drug is it stops the baby from breathing. Given the fact that Luca will probably already have trouble breathing combined with potential of this side effect, he will most likely be intubated and on a ventilator right away. Once he’s stabilized, the transport team will take him next door to CHLA and I’ll move to recovery. AJ can go with the transport team right away and will be with the baby.  I’ll follow once discharged, hopefully within two days, but was told to plan for three.

I was also able to get a clear answer on what the good stats meant at my cardiology appointment earlier this month. Below is a diagram – see if you can follow along. 🙂

hlhs

 

The first good thing was a ratio that went from 3:1 to 5:1. The higher the better.  Blood needs to flow through the right and left atriums (the upper red and blue sections) because it can’t go through to the left ventricle (bottom red section) as it is almost non-existant.  The flow through the pulmonary vein (the middle blue tube) drains into the left atrium and pressure builds because there’s restriction in the flow from the left atrium to the right atrium.  Blood flow through the pulmonary vein at a ratio of 5:1 means that the septum is moderately restricted versus severe.

The other number measures the different in pressure between the left atrium and the right atrium.  I believe the scale is 1-5.  The rating was originally a 3, but is now a 1. The higher the number, the more restriction of blood flow.  Therefore, the lower the better.

No sonograms or baby updates at this appointment, but we have a cardiology appointment next week.  We will see then how Luca is doing and are hoping for any positive news. We can’t wait to meet this little guy!

luca 33 wks

 

Here’s what you can pray for between now and August 26th:

  • A complication free c-section. The faster I heal, the quicker I can get to Luca.
  • That the neonatologists can quickly and successfully intubate Luca and get him any breathing assistance he needs right away. Any time spent without oxygen getting to his brain means brain damage. He’ll be checked before and after each procedure to monitor the size of his brain for damage. 
  • Continue to pray that Luca’s valves and lungs are not damaged from any pressure experienced from the restriction in utero.
  • That this baby will grow, grow, grow. As you know, the bigger the better for surgery.
  • The hands of the cardiothoracic surgeon. Luca’s heart will be smaller than a walnut and swift and steady hands can make all the difference.  For each heart surgery, Luca will be on the heart-lung bypass machine which also carries a high risk for cognitive damage. Luckily, Dr. Starnes and CHLA have a record of short time spent using the bypass machine.
  • All the doctors in general.  I was told to expect “a million people” in the OR during delivery, and while it’s obviously an exaggeration, there will be a lot of people and a lot going on.
  • Finally, for a miracle.  It doesn’t necessarily need to be for Luca to suddenly have a totally healthy heart, but there’s so many hoops for him to jump through that we’ll take a miracle anywhere in the process. 

14 thoughts on “Birthday

  1. You continue to floor me with your bravery through this journey.
    Your son is lucky to have such a great mom and dad.
    May all the prayers for Luca be answered.

  2. Thanks for the updates. I will continue to keep Lucas in my prayers. By the way, August 26 is my Daughter’s birthdate. I was bedridden with her too because of gestational hypertension. I too was scheduled for a C-Section but gave birthday naturally. She will be 27 this year. God continue to be with you all. Linda.

    >

  3. Enjoy these final weeks of pregnancy, they will go fast! Praying Gods perfect peace over you and AJ as wait to meet your son. Please take care of yourselves because Luca will need you well and strong to be there for him! Praying for Luca!
    PS got my bracelet! I’m an official team member!

  4. Praying for you all constantly, but more specifically now for a safe delivery, quick recovery for you, and most importantly the wisdom for his Doctors. Sounds like you guys have an amazing team who is going to take good care of your boy!

  5. I so can’t what for Lukas birthday. This little man is so loved by so many. Megan and AJ keep strong and positive. Love you guys

  6. It must be exciting and nerve wrecking to know delivery day will be fast approaching. We will be praying for all three of you. No doubt AJ will want to be with both of you at the same time, and you’ll probably want to run out with him right after they whisk the baby away. I want to offer my assistance, but I’m sure there’s nothing little ol me can do from San Diego besides send prayers and good vibes. So I’ll do that 🙂

  7. Remember God knows you and loves you. Whatever the three of you have to go through, He is there–right beside you.

  8. Reading your story brings me back 15 years ago with my son Austin. Dr. Starnes was his Surgeon as well. My sister told me that during the delivery, there was so many doctors in the room watching and waiting to take him away. 36 weeks, I delivered at White Memorial and he was rushed to CHLA. He was also immedietly started on Prostaglandin and was required to be intubated for support. . In Austin’s situation he had a tumor in his heart which filled the entire right ventricular cavity and protrouding throughh the tricuspid valve into the right atrium and obtructing the right ventriuclar out flow tract. AFter a long discussion the surgical team, we had decided to remove the tumor and convert Austin to a functional tricuspid atresia. He went through 3 heart surgeries by the time he was 18 months old. the BT shunt,, Bidirectional Glenn Shunt and finally the Fontan. This 3 stage is part of the HLHS.

    Austin is 15 years old now. His heart is the least of things we worry about with him. He is diagnosed with Tuberous Sclerosis. I just want to let you guys know that you are not alone in this. Faith and trust in God has pulled us through this. If you need anything please let us know.

  9. Dearest Megan, AJ and Luca, thank you for your latest update and the photo of your gorgeous boy. It sounds like Luca is already gaining the strength that he needs for the next part of his journey in life, and that strength is coming from you Megan, his amazing mum. I will pray for you all and your family and the teams that will channel their amazing skills and knowledge through their work on little Luca xxx
    By the way I wasn’t able to get my bracelet, they don’t post to uk but I do carry an angel around with me! Xxxx

  10. Praying for you guys and sending our love!! God is bigger than any of this and He DOES have a plan… good plans… plans for a future and a hope.
    PS, how can all this wisdom and strength be coming from the cute little Megan in my kindergarten Sunday school class? God is good!!

  11. August 26th our lives will change , our family will be complete 😘 I can’t wait for this handsome , strong, amazing little boy to be born ! Luca Wyatt there is such a BIGGGGGG support team standing behind you and fighting with you . It’s amazing to know that 1 little boy is loved by so many people without even being born . You’ve brought so many people together . It breaks my heart that I am not able to be there when you are born and make your entrance into the world but I will have my phone next to me the whole entire day just waiting for news and for your very first photo 😍 we love you so much Luca

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