Big Girl Crib

Yesterday, not a whole lot changed medically. Katherine is still stable and working on healing. They had slowly been increasing her feeds and she was up to 11 mL/hr yesterday when she threw up several times. So, they stopped her NG tube for about 2 hours and only set her feeds for 9mL/hr when they started her back up and she has been fine through the night with that. She didn't have a fever or really seem to be upset when she threw up, so they just thought her little tummy needed a break and it seems to have worked.

There were two pieces of exciting news yesterday. First of all, Katie's nurse felt that she was getting big enough to graduate to a big girl crib instead of the little warmer that she has been in since she was born. She has not had any problems maintaining an appropriate temperature so they went for it! She looked so big in her warmer and now she looks so tiny in her great big crib! It also gives her more room to squirm around because she is a real wiggle-bunny.

Also, yesterday morning Michael smiled at her... and she smiled back! We have seen her kind of practice smiling when dreaming before, but this was the first time she smiled when she was awake and in response to something we did. Whenever she was sleeping yesterday, she also smiled a lot more as well. We take this to mean that she is a little more comfortable and content now. It was kind of concerning to only get to see the "mad face" for such a long time. What a relief to get to see some new expressions!

Big Girl Crib



Sweet Precious Girl

Well, so far so good for being off the vent. Monday night, she was a little hard to settle - but I am guessing no harder than any other infant that has had an empty belly for the past several days. She woke up about every half hour to an hour, we would settle her down, and repeat. She must have actually really fallen asleep around 1am because the next thing I knew, my 6am alarm was going off. The nurse said that she had started settling herself whenever she would stir, which is wonderful. Yesterday, they took her sedation back down some - she is now off her Versed drip and down to .8 on Dex (from 1.0). They did an echo of her heart, which showed that she has good function of the heart, although there is a slight amount of valve leakage. They have weaned her high-flow nasal canula (the breathing tubes that sit in her nostrils like in the movies) down to room air (meaning it is shooting the same amount of oxygen we get at her) and only 4 liters (not pumping as much of it at her). All of this is good, as it is bringing her closer to being able to breath with no assistance whatsoever. Her oxygen saturation is sitting around the 80s with the current high-flow settings. To give a little perspective, in an average person 95%-100% is considered normal. According to the Mayo Clinic, below 90% is low and considered hypoxemia. Katie's goal is to be 75% or above.

The best thing about yesterday was that I was able to hold my little Katie-bug for most of the afternoon. She definitely likes to be rocked and was asleep for hours in my arms. It was wonderful to be able to look down and see her little angel face. We pray that she continues to improve and that she doesn't have to go back on that big mean ventilator. We are very much looking forward to the day we get to take her home and hold her without any cords, wires, and tubes attached to her.

We also got to have dinner and visit with our heart friends, the Clarks (http://www.heartofteammurphy.com/), yesterday  near the hospital. It is always such a blessing to get together with them and our other heart friends, the Williams's (http://www.babytrentwilliams.blogspot.com/). There is nothing like getting to talk to friends and fellow parents who have a unique ability to understand what we are going through at the moment, since they have been through it themselves. We can't wait til Miss Katherine is old enough and well enough to play with her friends, Trent and Murphy!

4 Weeks Old

Today marks Katie's 4 week birthday and an official month in the hospital. She also got to be reextubated this evening. I will give a cautious "Yay!" On the plus side, she is now back on high-flow and no longer on the vent. However, she is still off her feeds so she is hungry and feeding her as a comfort measure is not an option. They are also not able to use as much sedation now that she is off the vent, lest she forget to breath. Soooo, we shall pray that she is a good girl and does not get too fussy. Hopefully she will get some rest tonight.

Update 3/25

Katie's infection continues to clear up. This morning during rounds, the docs said that her white count was back in the normal range, which is good. Her belly is looking a little better as well, although she is still off of her feeds. We are hoping that once they do restart her feeds, her stomach doesn't just do the same thing again. They are doing more pressure support trials, to practice getting ready for reextubation. However, they are taking this slow as she is still recovering from the infection and her belly issues. Please continue to keep Katherine in your prayers, as well as the other children here in the CVICU. They have been quite busy of late with lots of kids that need prayer and healing.

Recent Pics

Peek-a-boo Katie

Katie in my arms after she was extubated the first time

Pics of Katie after she was reintubated (through the mouth this time). Her nurses decorated her warmer with blankies from home. 

More Pics

Here are some more photos. They are a little bit older since we have had some trouble uploading from the hospital. Once we have newer images downloaded onto our computers, we will post some more recent pics.

Getting to Know Katie-Bug

Katherine has had her right chest tube removed, so she is now chest tube free. She still has the wound vac on her chest incision, which continues to very slowly improve. Not a whole lot has changed medically over the last couple of days. She has had a little difficulty with her little tummy, so they have had to stop and start her feeds through her NG tube a couple of times. Right now, she is tolerating food well, so they are slowly increasing how much they give her. She doesn't seem to like being rushed at all, hehe. In the meantime, we have been able to get to know her a little better since her sedation is a lot lower at the moment. She has an incredibly strong grip and loves to hold on to things. We prefer that she hold on to our fingers instead of her tubes, which she will attempt to pull out if given the opportunity. Thus, we and the nurses tend to keep her swaddled up when we are not close enough to her to grab her hand if it starts to go for a tube. She also likes to have her head held when she is upset, or gently stroked when she is not too aggravated (this sometimes puts her to sleep.) She also now has a little stuffed ladybug hanging from the light above her warmer that she likes to practice looking at. We have been so concerned about her being able to live and to heal up, but we have also been missing being able to have normal experiences with her at the same time - changing diapers, cuddling with her, kissing her, and all of the other everyday parenting experiences. It is such a blessing to be able to start getting to know things about her and her personality.