Hill Family Blog: An update on Kaity Bug

Wednesday, December 9, 2009

An update on Kaity Bug

When Kaitlyn was 6 weeks old, she had a blood transfusion due to severe anemia caused by her antiviral. She was off the medicine for about 6 weeks as we waited for her blood to stabilize. When everything was back to normal, she was put back on the meds and tolerated them well for about a month. Lab results when she was about 3 months old showed severe neutropenia (low neutrophils, a type of white blood cells) and slight anemia. We started her on a med called neupogen and reduced her antiviral. Last week I got a call telling me that her nuetrophils were up, but she was severely anemic again. They asked me to come in the next day for labs and a possible blood transfusion.

Luckily, my parents were in town and they took Kinsey for the day. I took Kaitlyn to the hosptial a little before 9 am and got some labs done. While we waited for the results, I gave Kaitlyn her neupogen. Her labs finally came back and her red blood count had dropped even lower and was at a pretty scary level. We decided to do the transfusion.

Kaitlyn has very small veins and it is often a struggle to get blood drawn and IV's put in. The nurse that was doing the IV is a former NICU nurse and felt pretty good about getting it in. Unfortunately, after two tries it still wasn't in so she called in the charge nurse from the NICU to do it and asked her to bring a transilluminator, a device that shows where veins are. It took the NICU nurse two tries but she finally got it. Poor Kaitlyn. She just screamed and screamed and screamed. It took three people to hold her still. I am sure that half of the hospital heard her.

Anyways, we finally got the transfusion started and Kaitlyn started to pink up really quickly. She was very pale when I took her in. I talked with her doctor and he said that he wanted to start her on another medicine, epogen, also an injection, to help her body make red blood cells. We gave her a dose that same day and she handled it great. She was so happy after getting some blood and taking a nap. She charmed everyone with her sweet smiles. The nurse kept bringing people in to see her.

I finally was able to leave the hospital a little before 7 pm that night. I was the last person in the children's clinic (other than the nurse) and I was actually locked in. Kaitlyn and I slept VERY well that night. :)

Kaitlyn is doing great now and seems to feel better. We went back on Monday and did labs again but I haven't gotten the results back yet. We also did a hearing test on Monday. Her left ear is still testing perfectly which is wonderful. People keep asking me if we are out of the woods for additional hearing loss. No, we are not even close. She could easily lose hearing into adulthood. We are hopeful though and in the meantime, we talk to her all the time and let Kinsey make lots of noise!

I passed the "test" to be able to give Kaitlyn her shots at home and will give her her first one today. I feel fine with it but Jason is not excited to have to hold her down while I do it. :)

I think that is about all. I am started to feel like a pharmacy and Kinsey thinks that she is a doctor but other than that things are almost back to normal. I will still go the hospital once a week for labs and a check-up but that is sooo much better than 3 times each week!

Kaitlyn's "big eyes" wondering what is going on

Making her better

Kaitlyn watching tv with me

Our nurse thought it was so funny that Kaitlyn was so into the TV. When it came time for the IV to come out, she put a movie on to distract her and Kaitlyn never made a sound.

I LOVE her chubby legs! They were so, so skinny when she was born, just a little bigger than my thumb. She is doing so good!

3 comments:

april said...: It breaks my heart they had to poke her so many times for her transfusion. That must have been so hard...I have a hard time when my babies get their routine shots. I am so glad to hear that it went well and it is good to see her with chubby little legs!!; December 9, 2009 at 5:37 PM
Lacey said...: She's just so tiny on that huge bed! Her chubby legs are just adorable. So glad that everything went well and she's responding well to her new meds.; December 9, 2009 at 7:00 PM
nicole lindsay said...: i hate it when babies get hurt. it just breaks my heart. She really is extremely cute! What a brave little girl.; December 10, 2009 at 11:46 AM

Moments...

December 13, 2010
Kinsey: "Mom, do you like being a human?"
Me: "Yes."
Kinsey: "I don't."
Me: "What would you rather be instead?"
Kinsey: "A ballerina."
October 26, 2010
Kinsey told me: "I think right now Jesus is saying 'Halloween is in 5 days! I will make it NOT rain that day.'"
June 18, 2010
Kinsey's band-aid fell off in the middle of the night. Kinsey decided, "I think Heavenly Father took it off."
June 18, 2010
Kinsey's explanation of teething: "When I was a little girl, you put some things in my mouth, and they hurted, and then they turned into teeth so I could chew! And that's what will happen to Kaitlyn."
June 3, 1010
Kinsey asked me today, "Mom, why do parents not listen?"
May 3, 2010
I braided Kinsey's hair today. When I took it out, Kinsey looked at all the waves in her hair and said, "I look like an old, old lady!"
April 29, 2010
Kinsey drew me a picture today and said, "This is for my two grown-ups; you and daddy."
January 15, 2010
I gave Kinsey a cookie tonight after dinner. She finished it and asked for another. I told her that I had already put them away and she said, "Well, can you put them un-away?"
January 15, 2010
Today was an unusually nice day (in the 50's) and Kinsey told me, "The sun dried up all that winter!"
December 10, 2009
A classic Kinsey sentence, "Mom, last morning your daughter named me and you dad named Grandpa forgot to weprise (surprise) yours mom!"
November 25, 2009
Kaitlyn woke up from a long nap and Kinsey told her, "Welcome."
November 25, 2009
Kinsey told me, "Mom, I have been holding my pee for one hours! I need to go potty." The other day she told us that she had been in rest time for "30 hours."
November 13, 2009
After her bath tonight Kinsey said, "I look as nice as a daisy!"
November 12, 2009
Kinsey said, "Kaitlyn can hear me in her left ear but not her black ear!"
November 10, 2009
Someone asked Kinsey how old I am, she said, "I don't know what letter Mommy is."
November 7, 2009
We are working on knock knock jokes but Kinsey doesn't really get them. The other day she told me this joke..."Knock knock, who's there? The missionaries! Ola!"
October 30, 2009
Jason is teaching Kinsey some Spanish. The other day she was practicing her counting and started out with "One-o."
October 26, 2009
I was doing Kinsey's hair in the morning and it was tangled. She said, "My hair is all rectangled!"
October 26, 2009
The other day I told Kinsey that we were going to go to a Halloween party at the church. She told me, "Nephi goes to our church."
October 24, 2009
Jason took Kinsey to Wendy's to eat and she told me, "I had a kids meal and Daddy had a big guys meal."
October 22, 2009
During prayer tonight..."Help Kaitlyn to be happy when her binky is in, when it falls out then she not be happy."
October 22, 2009
Kinsey told me, "Kaitlyn is hearing me! In her listening ear." She knows that one ear "doesn't work very well."
October 12, 2009
The other day I was hurrying Kinsey to get out the door and she looked at me and said, "Chill Mom."
October 9, 2009
Kinsey told me that Kaitlyn has "ABCDEFG" (referring to her CMV).
October 7, 2009
Kinsey asked me the other day if we could take a "talking picture" (video).
September 9, 2009
Kinsey told me, "I love Kaitlyn. She is such a good cleaner!"
September 9, 2009
Kinsey: "Why does that doggy have a handle?" (the dog was on a leash)
August 30, 2009
My brother came over for dinner today. After he left Kinsey said, "I just love that man."
July 19, 2009
The missionaries came over today. After they left, Kinsey said, "Them missionaries are so lovely and cute."
July 18, 2009
Kinsey noticed some guys moving furniture outside of our apartment. Some had taken their shirts off and she asked me why. I told her that they were probably hot and explained that sometimes guys take their shirts off outside but that girls shouldn't and figured that would be the end of the conversation. But a little while later she saw the guys outside again and said, "Them boys took off their shirts. They're HOT!"
July 5, 2009
The other day Kinsey told me that when she gets older, she will be angry. I later asked her what she thought the word angry means. She said, "It means I be soooo tall!" I don't know how that one got so mixed up...
June 25, 2009
The other day I started to hiccup and said to Kinsey, "I have the hiccups." A little bit later she yawned and told me, "I have the yawns."
April 22, 2009
Kinsey told me today..."Daddy mine family and you mine family. All both of you mine family!"
April 21, 2009
Kinsey noticed Jason taking a nap one afternoon and asked me what he was doing. I said, "What is Daddy doing Kinsey?" She thought for a moment and then said, "Homework."
April 1, 2009
Kinsey and I took a walk to take some things to the recycling bins. She usually brings her stroller and a doll or two but didn't ask to this time. When we were halfway to the recycling bins, she stopped in her tracks and said, "Oh my! We forgot mine stroller!"
April 1, 2009
I asked Kinsey is the eggs she was eating for breakfast were good. She thought about it for awhile and then said, "kind of."
March 2009
-I was trying to explain that we didn't need the lights on because it was sunny outside. Kinsey finally kind of caught on and said, "We don't need the lights, the sun is on!"
-That transpired into this...
I was getting ready in the bathroom, a room with no windows, and Kinsey told me, "Mommy, we don't need lights, the sun is on!"
-And finally into this:
Me: Kinsey, you don't need the light on, the sun is on.
Kinsey: No, the moon is on.
(She's two, so she argues everything of course)
February 27, 2009
Kinsey tells me that everything costs "three nine dollars."
February 17, 2009
Kinsey's newest counting method: one, two, three, four, nine, two, three.
February 1, 2009
When Kinsey finds something she is looking for she says, "This it is!"
January 26, 2009
Kinsey has a little basketball that needs aired up. She brought it to me the other day and told me that "It needs batteries."
January 15, 2009
If I don't pay attention to Kinsey when she is trying to get my attention she will start to call me "Kimmie." She will repeat it over and over again until I focus my attention on her.
December 10, 2008
Kinsey and I left this morning and I said, "Bye Hun" to Jason. Kinsey then repeated "Bye Hun" and then started laughing and said, "Kinsey say bye hun."
December 7, 2008
Kinsey has been telling me that our stockings are "Santa's Socks."
December 3, 2008
Whenever Kinsey notices that there is more than one of something, she counts like this..."one two free, one two free--a lot!"
November 24, 2008
Today Kinsey told me that the eggs I was cooking were "cute."
November 16, 2008
After Jason strapped Kinsey in her car seat the other day, she said loudly, "It's too tight Mom!"
November 14, 2008
Today Kinsey told me, "I loo Shampoo." Interpretation: I love Winne the Pooh.
November 11, 2008
I threw some clothes onto the bed and heard Kinsey say, "Oh Mama. No no throw. No no." as she shook her head in disappointment.
October 23, 2008
I put a bow in Kinsey's hair the other day and when she saw herself in the mirror she said, "Oh! Cute!"
October 8, 2008
Kinsey poked herself in the eye today and kept crying about it. Apparently I didn't comfort her good enough because she kept saying "See Cole!" (our friend Nicole). I kept telling her that we couldn't go see Nicole right now and she finally said, "Get in car and see Cole!"
October 7, 2208
We were walking around the neighborhood this evening and Kinsey spotted a dog and wanted to say hi. The dog lay down and Kinsey said "Upside woof-woof down!" (upside down dog)
October 5, 2008
Jason made pancakes this morning. Kinsey really enjoyed them and kept saying "I loo pan pans!"
October 3, 2008
Today I was getting Kinsey ready for bed and she looked up at me and said, "I loo (love) mama. A lot." So sweet!
October 3, 2008
Kinsey was walking up the stairs on her own and I said "Be careful Kinsey!" She said, "I know!" Guess I say that a lot!
September 30, 2008
Kinsey now calls ice cream "abilene" and Winnie the Pooh "shampoo."
August 30, 2008
After a day at the zoo, we were talking to Kinsey about what we had done. We asked if she had fun at the zoo, she said, "Uh huh." We then asked her what she saw at the zoo. She answered, "More and more and more animals!"
August 14, 2008
I was telling Jason how well Kinsey was doing learning her colors. I mentioned that she knows the color white. Jason said, "She knows white?" Kinsey, very confidently, broke into the conversation and said "I know white." We just looked at each other. It was her first "real" sentence that she thought up all on her own. She's growing up too fast.
June 20, 2008
Kinsey and I were taking a walk around the neighborhood when she spotted a dog, or a "woof woof" as she calls it. We went over to say hi and the dog touched her hand with his nose. Kinsey looked at her hand then said "eww" and wiped her hand on her shorts.
April 22, 2008
The other day Kinsey and I were looking at a picture of President Monson. I asked her if she knew who it was. She got really excited, pointed to the picture and yelled, "Bampa!" (Grandpa)