Benson, Tetralogy of Fallot surprise! Part 1

As almost all who might read this blog (all 2 of you) know, Benson was born with a congenital heart defect. And we had no idea. Sometimes these defects are caught, and if you read the previous post, the ultrasound techs had a slight suspicion that something was wrong, but not enough evidence to warrant any concern. And I post this, not to rehash information that you’re probably aware of, but to have something out there on the web for another worried TOF parent, to know they aren’t alone.

Benson was to be my 4th c-section. Kade was an emergency, Charlie was breech (I was trying for a V-BAC), and after that, I really had no other options in Great Falls other than a c-section. I started having some Braxton-Hicks with Benson about 2 weeks before the scheduled c-section date. I have never had Braxton-Hicks before. And thankfully, these never hurt. But we live over an hour away from a big hospital, and not only was Benson going to be my 4th c-section, I had also had a T-cut incision (both vertical and horizontal cuts) which put me at a greater risk for hemorrhaging. So, although initially I was hopeful that I was going into labor, I soon got over that and prayed that baby would stay in until the scheduled date.

He stayed in. Thankfully!

When it was time to go and have the baby, we left the other kids in the loving care of my parents, and we headed to Great Falls the night before. And I threw out my back. We hobbled to the labor and delivery floor, and got things going. I tell you, if you HAVE to go the c-section route, the no-contractions part is a nice perk! I got on the surgery table, and as they were cutting me open I heard my OB proclaim that my uterus was stretched paper thin. A nurse later told me she could see the baby’s hair through it! Scary! Everything else was progressing text-book, surprise, it’s a boy!, when they then cut the umbilical cord. They let me do the token “hold your baby” for a couple of seconds, and then the nurses whisked him off.

This next part is from Aaron from the journal we started for Benson, as I was still recovering from the c-section and the anesthesia:

We got to walk into the operating room to get set-up. They let me come in after everything was done. At 8:17, Dr. Lee delivered you by c-section. Man, child, you had some hair! The nurse let mom see you for a sec, then over to the warming bed. After a little clean-up, you were grunting and not crying. You were getting pretty blue. I held you as we walked to our room. You got your first shots, eye medication, all the while receiving O2. The nurses made the call and you were taken to the NICU. Once in the NICU, many tests later, we were talking with the cardiologist. The official medical issue is called Tetralogy of Fallot (TOF). And with that understanding, a plane ride was ordered and I left your mother in recovery and flew to SLC. Before we left, your Uncle Eric came in and we wanted to give you a blessing. The nurse asked if Eric was a minister. If not he was not allowed in. I said, “He is now.” It was funny. He came in and we gave you the blessing. Then off in the cart to a ride in the ambulance. We went Code B– lights and sirens– to the airport. The flight over was bumpy, but you did great.”

Benson’s Private Jet Ride

 

I was told as Dr. Lee was stitching me up that Benson had been sent to the NICU, and once I had recovered I talked a little with our Pediatric Cardiologist, Dr. Ruggerie, about what was going on. I was informed that Benson would be sent to SLC. I didn’t even really get to hold him aside from that initial meet-and-greet. Once I had enough feeling in my feet to at least be wheeled down to the NICU, the kind nurses took me down to see the baby. It was awful. There were all sorts of wires and tubes already all over my precious boy, a breathing tube taped to his mouth.

Not exactly the first picture of your baby that you want…

Not how you want to see your much anticipated newborn.

We named him Benson Crain Shepherd Matthews (Benson was Aaron’s grandmother’s maiden name and his dad’s middle name, Crain is a family name on Aaron’s side, Shepherd was my grandmother’s maiden name)

The nurses were not able to let me hold my baby– all I could do was touch his precious little toes. Dr. Ruggerie told me they would be doing some genetic testing on Benson once he was in SLC to see if he had a condition called DiGeorge Syndrom (thankfully, it tested negative!), as TOF commonly occurred with DiGeorge.

While Aaron was in SLC, I was in the hospital, beginning my detested relationship with the breast-pump, and recovering from surgery. I was released Thursday morning, and headed down to SLC early Friday.

An abbreviation of Aaron’s experience in SLC with you:

“…after we landed in SLC, we got another ambulance ride to Primary Children’s Medical Center. It was a mad rush when we got here. Doctors and Nurses, 12 of them around… How did it look– there is an adage– no man is an island. You proved it wrong, my son. You are the island and you have a sea of doctors that want to help you. And they did. Now is a 48 hour waiting game… (Jan 31) No change. Many of the drugs you are on have been brought so you are not as red. Your vitals are stable. If it was not for your heart issues… you are perfect. I sit here in this room next to you and think– wow– how lucky I am that Heavenly Father has blessed us with you in this time where we can help you. The Lord has given us understanding/wisdom about our bodies…(Feb 1)… Talked with the cardiology team and have some paths to take… we have 3 options to take. Option 1 is a full repair. It has to happen anyway. Downside– it is really risky at the onset. We need to watch and then you would need more repairs down the road. However, it would be fixed. Option 2– a BT Shunt. This to me was/is the most risky. The risky part is being so far away up in Shelby. If something was to happen [i.e. a clot or the shunt were somehow damaged] it would be a death sentence for you. 3rd option is to place a balloon in your heart to open up the pulmonary valve. This has less risk for the long term issues. It is the least invasive. But of course, there are issues with this procedure as well [if it was ineffective, then we would have no option but to do one of the first options.]“

He had a reaction to the Prostaglandin E1 that was used to keep his ductus arteriosus (umbilical artery) open. While red and blotchy looking, it didn’t seem to cause him any discomfort. Once they were able to stabilize his O2 levels, they were able to stop the medication, and the discoloring went away.

The doctors could not agree upon which path would be the best for Benson in the long run. So they gave Aaron the options, told him to consult with me, and to consult with the Lord in the Meditation room.

The machines keeping Little Dude alive before they did the balloon valvuloplasty.

Once it was explained, your grandfather and I went into the meditation room and prayed. He then gave me a blessing. During the blessing I was told the right thing will be done. I felt immediately Heavenly Fahter’s love around me. It is going to be OK. I called your mother and we talked about all the options. We did weigh all of them and went with the balloon. The first reason was it is a starting point. It was less invasive. And if it works we can go home soon. So it was thumbs up and sign on the dotted line. 30 minutes later, it took 5 people to wheel your bed and all of your equipment down a floor to the Cath lab. I kissed you and they gave me a pager with a ‘Go Away’. 3 hours later, the pager went off…I walked in as they were getting you all hooked back up. Your O2 was at 98%. You look great. It is now 2 hours since the procedure. you feel a little bit better– pinker. You look healthy. At this point all medication has been stopped. Your levels are stable. We do make changes to your liquids that are called TPN. However, it has been labled by me– Mountain Dew, with a kick. It is your mixture of things you need, from minerals, vitamins, lipids, protein. It is a lot better for you than real Mountain Dew… Your room has a joyous ring to it my son. The team– your team– is so enthused on how well you are doing after this. We keep weaning you off the ventilation. Slowly you are showing great signs of improvement. The Lord’s had has been shown today.”

Daddy finally getting to hold Benson