The first picture there is yours truly. It was taken nearly 1 year prior to Jarom being born. I had no idea what was going to happen or how life would change.
When we went to UCSF the first time, we went to the NICU and saw other CDH babies in various states. They do this to help you prepare for what you will see your child go through. If you have to go through this, spend as much time there as you can. Prepare yourself mentally. There were 3 kids I can recall at that time. Amy, Austin and Tristan. Amy was on ECMO, she did not survive. Austin was a tracheal occlusion who did survive but had terrible after complications due to a more premature birth. Tristan was full term no intervention and went home but did have after complications.
The day Jarom was to be delivered, we were in a hospital room with another couple. The nurse was performing an ultrasound on the other woman and was going to do one on Jarom next. When it was our turn, she hastily completed the procedure. Doctors came in shortly and told the other couple their baby had passed away. Fetal surgery had been attempted to correct Spina Bifida some days before. They took her in first and Jarom was delivered after. A week or so later, the couple asked to see us and gave Jarom all of their baby's things. It was very sad. Todd and Terry.
Jarom was taken into the NICU. There was a baby named Jadon there. He was full term CDH. He was huge compared to Jarom. In that moment I thought I had made a mistake. Jarom was in bad shape. Jadon looked at me and was very active. Slowly, Jadon deteriorated due to his lung capacity not being able to support his growth. His single mother was very overwhelmed and stopped coming. Jadon passed away 9-7-2001.
The hospital put us in contact with Paul and Stacey of Las Vegas. They came and did the same procedure as Jarom. Their son Seven passed away 9-24-2001. There were other genetic abnormalities. It was very hard on us all. I will always have a bond to them.
There were also babies with Heart Problems. You would think that heart surgery would be more serious than CDH but those babies were in and out in no time seemingly. Jaqueline had cardiac and mild diaphragm surgery but had some seizures later. I think she survived.
Jarom had 3 surgeries. 1 in utero, 1 to fix the diaphragm, and 1 to correct an issue with his stomach. He suffered a collapsed lung on 9-8-2001. In the photos above where he is very swollen, I believe now that we were being told things to prepare us for him to not make it. I was oblivious to this and didn't realize it until much later.
One thing I learned is that you have to be strong. I wasn't really able to cope with seeing Jarom go through these things. I was able to put the plan together and keep things moving. We also had a great nurse in Jennifer Parson. 9-17-2001 My brother took me from UCSF to Utah to get our other 2 sons who were at their grandparent's house. He took us back to UCSF 9-24-2001 and I spent my time taking care of them. Carrie did a fantastic job taking care of Jarom.
I noticed that babies who had interaction did much better. The staff also paid more attention. Do yourself a favor and fight the good fight. I really beleive that interaction is 90 percent of the battle.