Dear Friends & Family-
First of all, thanks all of you for your prayers and offers to help. We really appreciate you and are comforted by your outpouring of love.
After much prayer and consideration, we have decided to deliver the baby near Children's Hospital L.A.(CHLA). We'll give you more details on our rationale as well as what we expect to happen with the delivery. We are providing this information because many of you have asked about it. would like to know and it's difficult for us to talk about time and time again. However, we apologize to those that just want an update without all of the details.
More Details:
First of all, we have been told that there are six surgeons in the US who are able to perform our surgery. Arguably, the best two are on the West Coast and we have met with both of them. We met Dr. Starnes at CHLA two weeks ago and toured the hospital. Dr. Starnes is a world renowned surgeon and is extremely qualified. While he does numerous complicated heart surgeries every week, he has performed less than 100 of our particular condition (Dr. Hanley at Stanford has done about 400). Starnes also has a very different opinion on how to repair our defect. He believes in doing the surgery in 2-3 stages as opposed to Hanley who does the entire repair at once. He agreed with our other doctors/surgeons that surgery is not likely the first week because there is no evidence of a pulmonary artery (/even though we would likely need immediate surgery, it would be much less complicated and our odds would be better if there were a pulmonary artery/). Given all we have learned & considering the impact on our family, we've decided to deliver at near CHLA. If, by chance, we need surgery the first week, Starnes is an expert and can perform the surgery. In addition, CHLA has an excellent cardiac unit and we are very comfortable with the staff. We still plan on travel to Palo Alto for repair surgery at Stanford with Dr. Hanley at a later date.
We will be delivering the baby next door to CHLA at Hollywood Presbyterian Hospital. We are meeting with a team of specialists in a couple of weeks that will orchestrate delivery and transfer the baby across the parking lot to CHLA. As of now, the plan is to induce labor between March 3rd & 10th (@38 weeks). Once born, the neonatal team will take the baby to the NICU for a few hours until it is stable enough to be transferred next door. The baby will be put on special medication as a precaution that requires a ventilator, IV fluids (no food for several days), and hooked up to several other tubes/machines (we'll spare you some detail). Erik can/will be with the baby the entire time. As soon as possible, a transfer team will take the baby to CHLA where it will go directly to the Cardiac Intensive Care Unit (CICU). There, the cardiac specialists will evaluate the baby and address any initial concerns. Erik will remain with the baby and Trisha is allowed to join as soon as she is able. They plan on performing a Cardiac Catheritization under anesthesia probably day 3 or 4. It will take several hours and there is a risk because the baby is a newborn and is already sick. At that point, we will meet with the surgeon and know exactly what the diagnosis/prognosis is. We have been told that there are 3 likely scenarios:
1. WORST CASE - There is no pulmonary artery and the collaterals are
not sufficient enough to repair. This is our worst nightmare as
surgery would not be an option and no repair is available.
2. BEST CASE- There is a pulmonary artery and they need to put in a
shunt to keep it open (temporary repair surgery performed at
CHLA). We would schedule the full-repair surgery for 2-8 months
later at Stanford.
3. MOST LIKELY-There is no pulmonary artery but the collaterals are
sufficient to repair in 2-6 months. The baby would be allowed to
come home after it's stable. It may require a feeding tube as
many babies with this condition have to use all their energy to
keep the blood pumping through their body. They're simply too
tired to suck and swallow. Others do fine and are able to breastfeed.
We are not planning on allowing visitors at the hospital. We will update via email as the situation develops. Erik can check email from his phone if you would like to contact us but we will be focused on our family and may not be able to return calls/emails. We will be sleeping in the CICU but will have a room at the Ronald McDonald House next door to shower/change. The kids will be at our house with family and we will bring them up to the Ronald McDonald House every 2 or 3 days so we can take turns spending time with them. The twins have never been away from us so this will be hard for them.
*Prayer Requests*
1. Pray that Trisha does not go into labor early.
2. Pray that the delivery goes smoothly.
3. Pray for the Cardiac Catheritization that requires anesthesia.
4. Pray that the baby has a pulmonary artery or substantial collateral arteries that are repairable.
5. Pray that we are able to bring the baby home in good condition with a good prognosis.
6. Pray for Shayna, Noah, Kyla & Kaylee. Their world is going to get ROCKED! Pray for comfort, understanding, and love during this difficult time.
7. Pray for Erik and Trisha--that we can hold it together with all of the chaos ensuing.
Thanks to all of you for your prayers and support. We appreciate that many of you want to help but there is simply nothing to do at this point except pray. We will update again once an induction date has been set and then from the hospital as the situation develops.
With love,
Erik & Trisha
Please donate to CHLA.
Please donate to Ronald McDonald House