A NICU story Part I

Posted by Kim:

Connor's birth went smoothly and for some reason Paul and I were under the misconception that we would have a baby that was 5 weeks premature, a little small, but healthy and ready to go home. Unfortunately that was not what happened. Connor ended up spending 2 weeks in the hospital after I was discharged. He was at Longmont United Hospital for one week and then at Denver Children's Hospital for one week. The following are letters I wrote to Connor while he was in Longmont United Hospital.

Written by Kim

October 23, 2002

Dear Connor,

Today has been a very difficult day for Dad and me, but somehow you knew just what to do to make us feel better. Last night was heartbreaking for us because we did not want you to leave our room. Dad was so sad when he had to put you down in your crib so the nurse could roll you to the nursery, but we knew it was the best thing to do and all we want is for you to be healthy.

Together Dad, the doctor and I decided we would start your tube feedings (gavage) last night and I think we made the right decision because you seem to have a lot more energy. I just never want to leave your side.

Unfortunately Mommy is feeling good physically and there are too many patients in the hospital so I must be discharged. I hate the thought of being without you, but I will be here with or without a room.

After your 4:30 feeding Dad and I went to dinner with Aunt Amy and Uncle Jeff and then we all came back to see you. Auntie Amy could hardly wait! She loves you so much. She says that you are the cutest baby she has ever seen and I know it is true.

After Auntie Amy and Uncle Jeff had a chance to cuddle and snuggle with you it was time for dinner. It turned out to be a great feeding. You breast fed at 7:30 and 10:30. It was just the encouragement Dad and I needed. We love you so much and just can't wait to take you home. This was definitely what we needed. Thank you Connor, we love you!

October 24, 2002

Dear Connor,

Today is going to be a tough day. Dad and I were very encouraged by your eating last night, but today you have to spend time under the bililights. You just look so vulnerable. I hate having to put you back down when you are done eating. Luckily Pooh has been by your side the whole time to keep you company. We'll have to thank Aunt Lisa for that.

You are so special to us and we love you so much. We are going to have the greatest times together.


October 25, 2002

Dear Connor,

Today was such a wonderful day! I guess you decided it was time to go home. When I came to the hospital this morning the nurse, Robyn, told me you no longer had the tube in your belly and you had taken both of your late night meals by bottle. I was so surprised I could hardly believe it. I had wondered why the nurse decided to take out the tube when Robyn said it was you who decided to pull out the tube. Apparently you pulled the tube out yourself and the rest is history. You breast fed and bottle fed breast milk all day long.

We also had a fabulous visit with the pediatrician Dr Rosquist. She said she is very excited about your progress and if all goes well the rest of the day you may be able to go home with us tomorrow. That would be the most wonderful thing. I can hardly wait for tomorrow.

Hopefully we will all be together at home. It will be a great surprise for Grandma Sarah too, because she will be arriving tomorrow night and will be so excited to meet you.

I know I keep telling you this, but I can't help it, Mom and Dad love you with all of our hearts. You are my special little guy!

October 26, 2002

Dear Connor,

Today was a very difficult day. I stayed overnight at the hospital so I could be with you every single minute and make sure you had some really good feedings. Unfortunately when we weighed you, you only gained one gram and I knew that was not a good sign but I still kept hope that you could come home. When Dr Rosquist came in she was a little concerned because you really hadn't gained any weight and you looked a little yellow. We looked at your bilirubin test results and they decided you needed to head to the tropics again (light therapy). Hopefully this trip will be the last.

The good thing about today is that you have started to eat more. It is usually a combination of tube and bottle feeding, but we'll take it. Our goal is to get you to consistently eat 30-35 ccs of breast milk at each feeding. Even though I was upset that you could not come home, I know it is for the best. The worst thing in the world would be for us to take you home and have to bring you back to the hospital.

Daddy has been working so hard on your little bedroom and it looks so great! He painted the wall and assembled your crib. You are going to look so adorable in the room. I think we picked the perfect theme (Americana). Now that we know our baby is a boy Daddy wants to add some Buffalo Bills memorabilia to your room. With their new colors the Bills stuff will match perfect. So, I am sure you will be a big Bills fan.

As the day wound down it began to get better. The most wonderful thing happened. You got to meet your Grandma Sarah for the very first time. Daddy picked her up from the airport at midnight and they came straight to the hospital to meet you. Grandma Sarah thought you were the most handsome little boy she has ever seen. I have to say that I agree. I just can't wait to bring you home so I can hold you whenever I want to. You are going to be the most spoiled little boy because Mom and Dad are going to make sure you have everything you could possibly want or need. We love you!

October 27, 2008

Dear Connor,

Today was a nice quiet day. We spent the day together feeding and reading stories whenever possible. But mostly you had to spend time in the tropical bilisunshine. I am looking forward to holding you all day tomorrow.

Grandma also visited you today and held you for a while. she loves you so much. We are all looking forward to the day you can come home.

Throughout the week Connor had many ups and downs, but I never suspected that things were about to get worse. Everyday I would go to the hospital thinking this is going to be the day we are going to go home, but because of his rising bilirubin count he had to spend every second of each day under the bililights. Apparently if his bilirubin count got too high it could have caused brain damage This increased bilirubin count was due to the fact that Connor was not pooping and no one seemed to be able to figure out why he wasn't having bowel movements. The only times that he was not under the lights was during feedings. Connor ate via a tube that went in through his nose and down into his stomach (gavage feeding). The great thing about the feedings was that I was able to hold Connor while he ate through the tube because they thought this would help him to associate feeding with Mom as I planned to nurse him whenever he was ready. Unfortunately many times he would eat and then spit up the majority of the breast milk. I was so thankful that I was able to pump enough milk that he never had to have any formula to supplement his feedings. I was with Connor everyday from 7am until 1am, missing only one feeding a day. While exhausted when I went home being away from Connor was absolute torture and I was so frustrated not knowing what was causing the rise in his bilirubin count. Every time we took one step forward it seemed like we would take 2 steps back. Until October 28th when things got much worse, but at least was the beginning of the end of your NICU stay.

To be continued........