Day 4 Updates

 6/12/2022

The past four days have been overwhelming. Overwhelming with information, questions, meetings, discussions, connections, research, updates, changes, lack of sleep, pivots, and starting to think about what could be the new normal.

Firstly, the pouring out of prayer and support has blown us away. We are speechless at the love we have received and the helpfulness that has poured in. It's been really hard to know what we need these past four days. As we've been told and now see, this is going to be a marathon, not a sprint, so I'm sure needs will arise in the future that we can better name and ask for. Thank you, to all the prayers and love -- we can tangibly feel it.

Macklin's Condition:

There are some important facts to know about Vein of Galen Malformation (VOGM), and they aren't full of everything a parent wants to hear with a child stuffed full of wires in the NICU. We have asked all our doctors and specialty teams to be real with us through this all. We can't formulate questions, a plan, or make adjustments unless people are honest with us. We have been so thankful they have done this and done it tenderly.

• VOGM is about a 1 in 3 million chance to be born with, which makes it extremely rare and extremely untreated by most medical professionals. In this case, those professionals are the Neonatal (NICU team), Neurointerventional Radiologists (surgery team), Hemodynamics (blood flow team), and Neurologists (brain team).
• VOGM has about a 40% chance of survival if treated with surgery. We have been given about a 50% chance of survival for Macklin after attempts in surgery to reduce the blood flow of the VOGM. If you want to read more about the rare condition to understand it, you can do so here.
• Another delicate piece of the puzzle is Macklin's brain. It is slightly underdeveloped due to the extra space and blood flow the VOGM took during his gestational time. Lots of conversation for Macklin is around what his future may or may not look like due to the impacts of his brain formation and the impacts of surgery.
• They are currently keeping Macklin in a "utero" type state so that they can run more tests and gather more information to attack the VOGM in surgery the best possible. Macklin has been AMAZING at following the Doctor's orders and doing exactly what he's supposed to do. This extra time has been really important.

The First Miracle

If you read post #1, you read about the connection we made with a mom of a boy who also had VOGM. Before we made this connection, lots of our research led us to a specialist on VOGM in Boston, Dr. Orbach. It just so happens, our friend of a friend of a friend's connection delivered her baby in Boston and her son was treated by Dr. Orbach for the VOGM. 

In our conversation with her, we asked if there was any way she could get us in contact with Dr. Orbach to glean his expertise on Macklin's situation. She amazed us with, "Yeah, of course, that's too easy" response. Sure enough, within three hours, we were on the phone with Dr. Orbach talking through Macklin's case. This was a miracle. That doesn't just happen people. This high-profile doctor took time out of his Saturday after his son's soccer game to call us.

But it gets better. He wanted to read all of Macklin's MRIs and tests to give us a consult on what he thinks should be done and educate us to the best of his ability on what's best for Macklin. I immediately called UIHC and asked for Macklin's records and ran into some weekend roadblocks. I was told that there was no way we could get those images until Monday due to staffing and hoops and resources. I hustled to pursue another option to access Macklin's "MyChart" which holds all his records, but was also told that would take all weekend.

Second miracle. Within 20 minutes I got an email saying we had been granted access to all Macklin's records on MyChart. I hustled to get everything to Dr. Orbach (this was at 10:00pm his time) and the next morning by 9:00 am eastern time he said he had reviewed everything and wanted to talk to us on the phone again. 

Third miracle. We connected 30 minutes later. We learned so much, and he was so helpful and kind and real about Macklin's situation. The biggest takeaway: there is hope, there is a chance, and we need another miracle to pull it off.

Going Forward

Today (6/12/22), we reconnected with the doctors and they are working on the surgery plan. We even have hopes that they too can consult and talk directly with Dr. Orbach about Macklin's case. Most likely, Macklin's surgery will take place early this week. Until then, we pray that he continues to do what he as been doing and hanging on. The greatest risks right now are that he could go into heart failure and/or something could happen in his brain to further damage it. So we pray that away and hold on to the hope that we can have a predictable chance at surgery to fix this.

Celebrations

1. We were reunited with Keira yesterday. It was so good for our hearts and brought joy into our life again after a few rough days.
2. We are celebrating Keira's 2nd birthday today with family. She says it still isn't her birthday (what 1 year and 364 day old kid knows that?), but we think she will enjoy the love and presents and attention.
3. Courtney was discharged from UIHC yesterday and is on the road to c-section recovery. She is doing great and such a fierce warrior for getting through all the pain.
4. We saw the outside of the hospital walls for the first time yesterday. God's creation is beautiful and refreshing. It was so wonderful to breathe in.
5. You all, friends and family, thank you. We are richly blessed and loved and feel it with deep gratitude.
6. Finally, we can't express how much it meant to us and to Macklin's future to speak with Dr. Orbach so quickly, and he's ambitiously become an advocate for Macklin. We are so humbled God provided this.

Specific Prayer Requests

• For another miracle -- that on the next test or imaging that God would divinely fix the VOGM and Macklin's brain tissue, and he could be the healthy baby God ordained him to be.
• For Mack Attack to continue to handle all the tubes, meds, and fluids with amazing results. He's doing great, but keeping him like this can only be done for so long.
• For all our specialty teams to collaborate in a manner that is best for Macklin and results in a surgery as soon as possible, with all the best people present to care for him.
• For our little fam. A lot is about to change as we stay in Iowa City for the long term for now and try to make it through Macklin's surgery schedule which should be set in the near future.

Isaiah 40:31, "But they who wait for the Lord shall renew their strength; they shall mount up with wings like eagles; they shall run and not be weary, they shall walk and not be faint."