Just Keeping it Real

The cardiologist appointment we had yesterday was quick and to the point. Dr. Pruetz did the echo, got some good images of what he wanted, and informed us that nothing has changed. Though the septum is not fully intact, the restriction is still very moderate, the stats show that Luca’s valves are muscularized and that lung damage is to be expected.

I asked him about the c-section plan my other doctors discussed with me and found out that delivery was scheduled on a date that Dr. Starnes, the surgeon, is not in the hospital……… There may be a change in date now, but we won’t know until next week. I feel very adamant that anytime my baby’s heart will be open that Dr. Starnes will be the one working on it. It is one of the main reasons we chose CHLA.

This entire pregnancy has been filled with unknowns and it’s been hard for the doctors to give any clear and concise answer on what exactly will happen.  Now that we have a plan pretty much in place and we’re getting down to the wire, I got real with Dr. Pruetz. I asked him if this was his baby and I was his wife and he was sitting in this room with a heart doctor to get a clear picture of reality, what’s the answer he would expect.  He said, wow you’re tough, but I understand what you mean. And he got on with it.  This is where we are…

We can expect a very, very sick baby.  The baby will be immediately taken to the OR for surgery on day 1 of life. A septectomy will be performed to clear the blockage, not to be confused with a septostomy which is done via catheterization. This is a full on open heart surgery. We can expect the baby to be intubated and on a ventilator (breathing machine) immediately upon delivery and throughout the septectomy. During this time, he will also be on the heart-lung bypass machine. Once that surgery is complete, his chest will be left open and his body will probably experience severe swelling.  A primary concern will be renal (kidney) failure and should Luca experience any of that, he will not be a candidate for the first “re-plumbing” surgery, the Norwood.   Brain damage is a concern while on the bypass machine.  The doctors hope to get his swelling down in enough time to perform the Norwood surgery without having to close his chest. Best case scenario for the Norwood would be within a few days of the septectomy, but given the swelling they are expecting, it could take longer.  He will continue be on the ventilator throughout the Norwood and back on the bypass machine. More chance for brain damage. The moment of truth will probably come after this surgery. Luca will be recovering from two open-heart surgeries after the Norwood and we are to expect swelling, kidney problems, etc. post-op.  All of this doesn’t even matter if Luca’s lungs aren’t working properly to begin with. But, if he makes it through the Norwood, there’s a 50% chance he will come home.  If that’s the case, there’s a good chance he will come home with oxygen given the lung issues they anticipate, but they hope to have him feeding on his on by that time. We can expect at least a two month stay between the CTICU and step-down ICUs IF both of these surgeries go well without any additional complications. That’s best case scenario, though, unfortunately, not the expectation). Assuming we make it home, there’s a 50% chance Luca will survive to make it through to his second surgery, which would be around 6 months.  If we make it to the second surgery and beyond, that’s already considered a miracle.

So 2.5 weeks til delivery and that’s where we are. This is probably just really awkward and I know people don’t know what to say or how to even approach this. Neither do we.  Just please continue to pray for us and Luca.

 

20 thoughts on “Just Keeping it Real

  1. I have been following your family’s story and I thank you for letting me (just a Galaxy fan) be a part of it. I will continue to pray for you all and our Galaxy house will certainly be thinking of you all during the next few weeks. Sending good thoughts and lots of prayers your way.

  2. My heart aches for the two of you anytime I read these updates. I’m praying, praying, praying for your family and baby Luca everyday. Keeping you in my thoughts always!

  3. Megan & AJ,

    I went to UMD with you guys. Megan we worked together at the Fund for Exellence. I’ve been following your story and my heart aches for you both. You are ao brave and so strong and please know that Luca and your family are in my prayers.

  4. I love reading your blogs and how positive you and AJ are staying through this tough time. GOD has a way of working miracles and there’s no doubt in my mind that this is indeed one of them. You and your family will continue to be in my families prayers everyday. Keep your head held high, GOD will always be with you. XOXO

  5. Sending love and healing prayers for you all!! I believe in miracles and am praying Gods miraculous healing for Luca!!!

  6. I am continuing prayer for you and your family. I am so glad that you are being rough with the doctors and getting the answers that you need even when they are tough answers. There is no need to go into any situation blinded if a flashlight is given to you from the beginning.
    I commend you and AJ on your journey and know that with the amount of prayers going on for you all, God is definitely getting the message.

    Love you!

  7. Praying for continued courage and strength for you both on this journey. While there is so much uncertainty for Luca’s outcome, he has been blessed every day by the love he already knows from two amazing parents every day

  8. Megan,

    I will continue to keep your family in my thoughts. I can only imagine the heartache these uncertainties is causing you and your family.I hope with all my heart that you get this miracle. Sending you love and putative thoughts from Florida.

    -Courtney

  9. We never know how long God will loan us our children. You are amazing parents already and Luca is blessed to have you as a mom. I know the feeling is mutual. You are an inspiration to so many. Praying for continued blessings and a miracle!

  10. That is a really big mountain for you guys to climb in a few weeks, I’m sure it makes for a lot of sleepless nights. Enjoy the time left you have with your little guy while he’s in there. Enjoy the little moments he kicks to remind you he’s there. Talk to him, read to him, and sing to him. I loved being pregnant but I never truly appreciated having my daughter to myself while she was in there until I my emergency c-section and she wasn’t with my 24/7. I’m praying that little boy is born with the strength that only God can provide. What a testimony this little guy is going to have. My only words of encouragement are to soak up these next weeks before the chaos begins. Big hugs to you guys!

  11. Thank you for sharing your story. It gives us something to pray for, something really important. We have gone down a similar road. May God have his hand on Luca, you, and AJ…from a big Galaxy family of fans.

  12. Thanks for sharing your story and spirit in such detail. I’ve not experienced anything similar in my own life, but to read your words and feel the courage and hope that you openly share with the readers of your blog, well… it’s deeply inspirational. Not only are your words not awkward, but the bravery and serenity that you are expressing – even with the odds stacked against you and your family – are a beautiful and refreshing in a world where so many of us are consumed and defeated by our own oft-insignificant problems. Thank you for that inspiration. I don’t pray in the conventional sense, but I’m sending all my positive energy from the Northwest. All my love and luck to the three of you!

  13. Best of luck to your family. My brother was born with HLHS and has had many complications, but he is 21 now and still fighting!

  14. Praying for your family- for a miracle for baby Luca, for certainty in your delivery date to be found this week and for continued strength for you & AJ.

  15. I believe that Jesus is in full control, and I will pray that He will continue to give you the strength, faith, and grace you need to be more than a conquerer. We love you

  16. My God bless and strengthen you and your family. Your grace through such a challenging time is an inspiration. We are praying for all of you.

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