Kelsey

 

 

I think one of the cutest baby shower gift we got was a child size fishing pole from Bruce’s dad. He LOVED fishing and could hardly wait to take her fishing. Which he did and sadly no pictures of their great adventure.

July 12, 1975 started out as a beautiful bright summer morning. Bruce and I are headed to Memorial Hospital to welcome our new baby. We turned on the radio and they were playing the song “Having My Baby” by Neil Sedaka.

Nine hours later we were the very proud parents of a beautiful baby girl. Kelsey Marie Knutson weighed in at nine pounds 15 ounces and 21 inches long. No idea how much our lives were about to change!

Bruce was so in love with her. He was an incredibly proud Daddy.  I woke from a nap and he said, “guess what I did?” He gave her the first bath. He was so proud. Bruce was a fantastic new Daddy. Never afraid to jump right in and help.

Kelsey had a monster size appetite. She was eating cereal by the time she was 3 weeks old. The only time she was fussy was when she was hungry and she could really let you know.

She had a bit of trouble keeping her weight up right from the beginning. At her 6 week check up she had lost almost a pound. The Dr wasn’t sure what that was all about. But wasn’t too worried. Just said we would keep an eye on it. Of course we would later learn why her weight wasn’t right.

When Kelsey was about 9 months old Bruce enlisted into the Air Force. Before he left he shaved off his mustache. Kelsey was not impressed! She wasn’t sure just who this man was. But didn’t take her but a few minutes to warm back up to her Daddy. She always loved her Daddy. Kelsey would light up every time he came home from work. They were always very close.

I remember asking my Mom and Dad to babysit one evening so we could go to a movie. She was fussy when we got there but they said don’t worry and just go and have a good time. We did have a nice evening but my parents sure didn’t! We could hear Kelsey crying as soon as we got out of the car. We went in and my Mom was no where to be seen. Dad suggested we just take her home. Apparently she cried the whole time we were gone.

Since we were new to all of this I just figured this was all normal. She always had a big tummy but a skinny baby. She almost always had diarrhea, but the drs weren’t worried so we weren’t either.

Bruce was gone for 12 weeks at Boot Camp and Tech School. Kelsey was sick several times while he was gone. She would run very high spike fevers and again the Drs weren’t sure what the problem was. She did this 5 or 6 times while Bruce was gone.

We started potty training Kelsey before Heather was born. I didn’t want 2 babies in diapers. One evening while Bruce was at work Kelsey was on the toilet and kept complaining  about her bottom hurting. She had a rectum prolapse. I called the hospital right away and was told how to help her. This was just one of several things that were pointing to a problem.  We were told she had to be checked for worms, wheat allergy, celiac disease and the list goes on. None of which were the problem.

The Dr didn’t seem too worried about Kelsey so we didn’t worry about it. Besides, Heather made an early appearance and so our attentions were turned to Heather and her problems at birth.

So many signs of Cystic Fibrosis and yet none of the Drs picked up on it. She started walking at about 10 months and did all the normal things babies do. Bruce’s parents loved her so much. It was so fun watching Norm (Bruce’s Dad) play with her. Kelsey loved her grandma and grandpa.

Heather had a lot of problems after she was born. Heather weighed 6lbs. 6oz. at birth and when we got her home she weighed 5lbs and 7 oz. So she was a tiny one. She didn’t have a sucking reflex so she had trouble feeding. Because she was so tiny she had to be fed every 2 hours round the clock.  When she was about 3 days old her bilirubin count started to climb. I was waiting for them to bring her to me so I could feed her and then never came. So I went down to the nursery and there she was laying in an incubator with patches over her eyes!  They had called Bruce at home and told him what was happening. BUT they forgot to tell me. I was not a very happy new Mommie!

Here liver count was climbing and they had to place her under special lights to help. Now, I am trying to remember the sequence of events. Several things took place but I remember them telling us that Heather’s bilirubin count was up to 11 and at 12 brain damage would happen. We were so scared and had no where to turn. Very slowly Heather’s count came down. Hurray do brain damage. We were very happy parents.

We finally got to take her home and Kelsey was so excited to see her sister for the very first time. She loved Heather and never had any jealousy. Kelsey wanted to help me with everything. Heather couldn’t hold down her formula and so her weight was a huge problem. We would feed her 2 ounces and she would throw up 3 ounces (ok maybe not but it sure seemed like it). We tried 5 different types of formula with no success. So back to regular formula and starting food early to help put on some weight.

But with some of Heather’s problems and combined with Kelsey’s the Drs decided to pay attention.

February 1978 we were air-vacced to Fitz Simmons Army Hospital, Denver, Co. We met a lot of people with some really sad health problems – A 12-year-old girl with cancer in her spine – a 1-year-old who had been attacked by a ferret (a family pet).

Then we were told the girls had a disease called Cystic Fibrosis. What? How? Why? and many more questions. I remember sitting in the Dr’s office and hearing him say, ” Your daughters were born with a genetic disease called Cystic Fibrosis”. He then went on to say that Kelsey probably wouldn’t live to be 5 yrs old  and Heather may not make it to 3 yrs old. Our world came crashing down on us and we didn’t know what to do. We were sent back to ND. with lots of medications for the girls.

We needed to be closer to a medical center so the girls would get proper care. I had NO respect for our pediatrician who said she didn’t know anything about CF and gave Bruce the keys to the hospital library. At least she was kind enough to do that. After all the research Bruce did we decided to put in for a transfer to a base back home in Washington. Nothing was available. We tried a couple of others but nothing was available. After talking with the base commander he recommended an early honorable discharge. We took it and were home by early spring.

BEING A PARENT OF 2 DAUGHTERS WITH CYSTIC FIBROSIS

I remember the day we were told the girls had CF. I think I sat there dazed and confused. My world had just came crashing down and I didn’t understand! What do you mean our daughters have this strange disease that we passed on to our children. Wait a minute! What? Slow down. What does that mean? Will they grow out of it? Will they die? What is happening? All these thoughts came flying through my mind in a flash! It was rather like seeing the Drs’ lips move but nothing was making any sense!

I remember asking if they were going to die. He looked me in the eyes and said, “Heather may not live to be 3 and Kelsey wouldn’t live to be 5. Life expectancy was very short for children with Cystic Fibrosis.” So what do we do now, I asked. The Dr talked about physical therapy, medication and on going treatment