A NICU Story Part II

Posted by Kim:

A continuation of yesterday's post, here are some more letters we wrote to Connor while he remained in the NICU. While our stint in the hospital was about to get worse, it was also the beginning of the answers to Connor's problems. Thank goodness for Denver's Children's Hospital!

Written by Kim

October 28, 2002

Dear Connor,

Today was a day filled with joy and concern. I was so excited to come to the hospital and see you today because I knew you would not need the bililights, which meant that I could hold you all day long. When I called Karen in the nursery last night she told me you had gained 16 grams. Dad and I were both VERY excited about that. When I came into the hospital this morning you took 23ccs from a bottle. I just knew it was going to be a good day. You laid in my arms all morning long, I couldn't bare to put you down. I just love it when you snuggle your head into my neck. You are the most beautiful and loving baby. Sometimes I can't believe you are mine. I often wonder how my life can be any more perfect. I have the greatest husband and the most wonderful son. We sat on the couch and read stories all day. We read about Old Yeller, Paul Bunyan, and Pecos Bill and of course we read your favorite book "Guess How Much I Love You." Later in the afternoon we had a wonderful visit with Aunt Kathy and your little friend Adrian. We had lunch on the floor and Adrian just stared at you. He can't wait until you start going over to his house to play. You two are going to have the greatest time growing up together.

When Mom and Grandma came back to the hospital to feed you at 5pm you weren't feeling very good. Dr Rosquist came to visit and we decided to go for a trip to Denver. You were the greatest little thing and got to ride in the ambulance with the nice nurses. I am sure it was very exciting. We are at Children's Hospital now and the nice doctors are looking you over. I knew we are going to figure out what is going on . They are going to fix it and you will soon be home with Mom and dad. We love you so much. Can you guess how much?

We love you all the way to the moon and back.

After a trip home to pick up Grandma Sarah and Paul we arrived at the hospital to find things spiraling down for Connor quite rapidly. It was kind of like watching a car accident. Everyone was rushing around quickly taking care of Connor and another critical baby that had just been born, but at the same time everything seemed to be moving in slow motion and the sound was drowned out by my mind wondering what was happening. The nurses were amazing, truly like Mothers to me rather than clinical medical nurses. I will never forget seeing Connor's limp little body laying in the crib with the oxygen tent over his head. I just wanted to hold him, he needed to be held by his Mom! The sweetest nurse just stood by his side singing Amazing Grace and rubbing his little fingers. The Flight for Life team came to take the other baby to Denver and we were waiting for Connor's team to arrive. The LUH nurses kept taking Polaroid pictures of Connor and giving them to me. I didn't understand what was going on and I kept screaming inside of my head saying "Stop taking his picture" because I was thinking that they thought these might be his last pictures alive. In retrospect however, I wonder if they took the pictures so when we arrived at the hospital we would be able to identify Connor, because there was not room in the ambulance for us ride along with him. Everything was so scary and all I could think of was the worse case scenario. I kept praying and praying that Connor would be ok. Life couldn't be that cruel, God wouldn't separate me from my baby, he was going to live! I'll never forget the long drive to Denver Children's Hospital, following the ambulance wishing I could be in the ambulance with Connor.

October 29, 2002

Dear Connor,

Again today was filled with joy and concern. We woke up in our little parent sleep room somewhat refreshed and immediately rushed downstairs to see you. You are just so cute I can't take my eyes off of you.

Around lunch time Auntie Amy brought Grandma Sarah down to the hospital to see you. We were all staring at you and saying how you are the most beautiful baby we have ever seen.

Soon after lunch Dr Mitchel came to see us to tell us about a heart procedure they were going to do. You have a duct in your heart (PDA Duct) that should have closed soon after you were born, but it didn't. So Dr Mitchel will go into your chest and tie off the duct so that all the blood flows where it should. We are also hoping that once this is complete it will help your intestines do the job they should do.

You went in for surgery around 4:20pm and Mom and Dad were VERY worried, but luckily Auntie Amy and Grandma were here to keep us company. We were also talking to Grandma Vonnie and Grandpa Roger every hour or so to keep them updated.

Not an hour later the nurse and the doctor came in to see us all and they said you were a perfectly behaved boy and the surgery was a great success. You even pooped while on the surgery table. You are just so cute.

We all hated to leave the hospital tonight, but we knew you were in good hands and boy did Mommy need a shower! Daddy too! But we knew we would be down to see you first thing tomorrow morning. We love you so much!

Even though being transferred to Children's Hospital was the scariest night of my life, it proved to be the best thing that could have happened to us. We had spent the last week in limbo in the Longmont NICU having no idea what was going on or how to make things better. We finally arrived at Children's around midnight, they gave us a parent sleep room that consisted of a bed, sheets and a phone for $1 rental, but at least we had somewhere to sleep. By the time we were at Connor's bedside at 8am the next day Drs Karrer and Hendrickson had already identified the need for a PDA duct ligation and the possibility that Connor had Hirschsprung's Disease. We had hoped after the PDA Duct ligation that the new blood flow would correct Connor's bowel problems, but things remained the same so the doctors took a tissue sample from Connor's colon and when the test results arrived they discovered that Connor did in fact have Hirschsprung's disease, a rare disease of the large intestine where the ganglion cells, or nerve cells that make the intestine push stool down to be excreted, are absent in some or all of the intestine. The stool then backs up in the intestine causing an infection in the belly and would eventually cause death. This disease is more often found in children with Down's Syndrome and has varying degrees of severity.

Thankfully after several days of observation and an enema, the doctor discovered that only the lower sigmoid region of Connor's colon was effected and at 3 months he would be eligible for a Pull Through Surgery. So they kept Connor in the hospital for observation for one week after we arrived to make sure he was stable and to educate us on how to care for Connor's bowels until the surgery.

Each day we would go down to the hospital and sit by Connor's side in the one chair that was there. Every three hours I would go to the breast pump room (which was about the size of a phone booth) and pump enough milk to feed the entire NICU! I was just glad they continued to feed Connor the breast milk and the my milk stayed so that I was able to nurse Connor until he was a year old. These pumping breaks were literally the longest 20 minutes of my life. I am not sure what the new hospital has, but hopefully there is a little tv or something in the pumping room!

Eventually on November 5th after they had deemed Connor stable and taught us how to irrigate his bowels with a tube and saline solution (which we had to do for 3 months) we were released from the hospital and ready to go home. It was so funny because I had been praying for so long for Connor to come home with us, but when they actually said we could leave I started to panic a little and worried if I would be able to take care of this precious little baby. Until now I had hardly even changed his diaper or dressed him in clothes. Luckily love overcame fear and I knew that Paul and I would be wonderful parents. As you can imagine once we arrived home we could hardly put Connor down. He rarely if ever slept in the crib or pack and play and eventually we just adopted the family bed and we haven't changed since!

Connor looked so tiny in his car seat it seemed like it really wasn't very protective.

At 3 months old Connor had his pull through surgery, they removed the lower sigmoid region and he began popping right away and hasn't stopped since! I was very impressed with the care we received at Denver Children's Hospital and I was particularly impressed with our doctors Dr Karrer and Dr Hendrickson. While I never imagined this situation happening I was so thankful to have such a great hospital close by!