Megan and Jon Nelson Baby Elena Nelson

First post: Jun 9, 2019 Latest post: Feb 5, 2021

Welcome to our CaringBridge website. We are using it to keep family and friends updated about our baby girl's journey.  

Thursday, April 4th, we had our 20 week ultrasound scheduled.  I met Megan in Alexandria for our appointment.  With the joy of finding out we were going to have a baby girl came the devastating news that our baby had a congenital diaphragmatic hernia (CDH).  CDH is when the diaphragm does not form or has a hole in it which allows organs from the abdomen to go up into the chest cavity.  The organs take up the space needed for the lungs to fully form, grow and develop. Along with this other complications can arise. After this ultrasound we knew that our baby's stomach was already up in her chest shifting her heart to the right.

We were told that there are different severities of this condition. We knew immediately that we would have a stay in the NICU after birth for respiratory support and to repair the hole in the diaphragm.  The hospital in Alexandria does not specialize in this condition and would not be able to provide the level of care needed after birth so we were referred to St. Cloud for a follow up.

After a long weekend of not knowing what we were up against, Monday came around and we were on our way to St. Cloud for our next appointment.  They confirmed that our baby had CDH and that it was too severe for them to handle.  

We had gone from Alexandria (a little over 20 minutes away) to St. Cloud (just under an hour away) and now we were being referred to Minneapolis Children's Hospital which is about a two hour drive when traffic cooperates.  We had our appointment set for the following Monday.

On the way home from St. Cloud we talked about the frequent appointments we would be having, the time they would take, money, our jobs, etc., but we knew we wanted to do anything we could to meet our baby girl at the end of it all.

Megan began researching CDH on that drive and read a story about a boy from Detroit Lakes, MN who had a trial surgery called FETO performed at the Mayo Clinic. To put this not-so-simple surgery simply, they place a small balloon into the baby's trachea to promote lung growth.  The balloon helps the lungs retain fluids which helps them further develop which reduces the need and/or length of time needed for interventions after birth, in hopes that they will be able to repair the hole sooner afterwards.

Megan called Mayo immediately when we got home.  They were very supportive and eager to meet with us.  Just like that we had another appointment scheduled for Thursday and we would be heading to Rochester, now 3 hours away from home.

We would have to leave Wednesday night after work for our full day of appointments.  Blizzard warnings were in effect through the whole state and I was worrying about the road conditions all day.  I was questioning if we should even waste our time going to Mayo, almost in denial that my child would be sick enough to need the care that this caliber of a place could provide.  We decided to give the roads a try and if they were bad we would turn around.  They were just fine the whole way and we arrived in Rochester to check into our hotel for the night.

The next morning we arrived at Mayo.  They called Megan's name and we were on our way back for our first consultation.  As we were going through the routine explanations, questions and concerns, Megan asked what was the possibility that we would be candidates for the FETO surgery we had read about.  We were told that there were many boxes that needed to be checked off before even being considered and that we would know more about that throughout the day.  They explained that only the most severe cases of CDH would qualify for this procedure.

Next we went to ultrasound.  They confirmed what we knew from our last ultrasound and reiterated that our baby's lungs were much smaller than they should be and discovered that a portion of the liver and some intestine was also in the chest.  Small lungs and liver involvement are two of the boxes on the list for FETO to be checked off.  

We met with Dr. Rodrigo Ruano, a world-renowned pioneer of the FETO procedure.  He was very optimistic that our baby would benefit greatly from this surgery as long as we met the rest of the criteria.  One-by-one, after a few more day-long visits to Mayo, we checked off the rest of the boxes.  A meeting of the minds took place with the entire team that we had met thus far at Mayo.  They all had to be in agreement that this surgery would benefit our baby.  We waited in a room by ourselves and heard a knock on the door.  Dr. Ruano entered and relayed that the Mayo staff involved with our case qualified us for FETO surgery.

We had additional appointments where Megan underwent an MRI and amniocentesis to confirm that our baby was still a candidate for the procedure.

We scheduled pre-op appointments for May 30th.  Everything was a go and we would have to be back to Mayo at 6 AM the following morning for the first procedure attempt.  I say first attempt because there is no guarantee that baby will be in the correct position for this procedure to take place.  

We checked in, got our room situated and Dr. Ruano came for a visit.  He did a bedside ultrasound and said the baby was in the perfect position.  She opened her mouth at him and he exclaimed, "She's saying put that balloon in there, Dr. Ruano!"

They rolled the girls out of the room.  Everything went fairly quickly and as planned and we were only the 6th performed FETO surgery within the walls of Mayo Clinic.  Dr. Ruano has said many times throughout that Megan is a very strong woman.  I couldn't agree more.  We stayed overnight in the hospital for observation.  Megan and baby were doing so well that we were discharged the following morning.  

Megan will be staying in Rochester for the remainder of the pregnancy as she needs to be within a half hour of the hospital if for any reason she or baby needs medical attention.  They will track the progress with weekly appointments during that time.  Sue (Megan's Mom) will be staying as well since Megan does need someone with her at all times and my Mom (Debbie) will provide relief for a week or two.  In 4-6 weeks, they will perform a follow-up procedure to remove the balloon and birth typically occurs within a week or two of removal (35-36 weeks gestation).

Robbie and I are back in Sauk Centre holding down the fort.  In car sales it is quite difficult to get weekends off but we worked out a schedule that allows us to visit Saturday night through Monday.  If anyone is up for a road trip they are welcome to tag along or visit at anytime!  :)

Thank you for reading our story.  We are excited to meet our new baby girl and are very fortunate and humbled to have a great support system in place to make this all happen.