You’d think we’d be ready

Well, after all the talk last week of Kaily having to stay in the hospital until at least the middle of December, things have changed again. On Monday the doctors decided that it was time for Kaily to go home on Tuesday (November 27). We were quite surprised as this was very different than what we had been told just a week before. We asked our questions and left that day thinking that Kaily was coming home with us on Tuesday.

You would think that after three months of Kaily being “here” we would have things all ready for her to come home. We were not quite ready, so we hurried and got things all set for her. We returned to the hospital on Tuesday expecting to bring her home later that day only to learn that she had a “respiratory episode” during the night. Every time this occurs she earns another five days in the NICU. It is supposed to be an incentive to be good, but Kailyn really has learned to love her bed in the NICU. We have told her how awesome Saline, the town we live in, is. She seems intrigued but not too sure if she wants to move there yet.

So, right now it looks like Kaily very well could come home on Sunday, December 2nd. Of course she will have to be on her best behavior the rest of this week. Regardless when her departure from the hospital occurs, our house is now ready for a baby. Mom, Dad, and big sister probably are not totally ready, but it is time. We will truly miss all the people who work in the NICU. They are amazing, and we are extremely thankful for their wonderful care for our tiny daughter. However, we won’t miss having to go the hospital every day. Today marks the 117th day of being at the hospital every day. That is really hard to believe. The day Sara was admitted to the hospital it is was 95 degrees outside. Today it is in the 20’s…it is SO time to go home.

Kaily is doing great taking all of her food from bottles now. She pulled out her feeding tube last Sunday and the doctors decided to leave it out. She stepped up to the challenge and is now choosing when and how much she wants to eat. She’s taking in the amount that they think she should. Boy, can she scream loudly when she’s hungry! I think our habit of sleeping through the night is about to be rudely interrupted! It’s truly amazing to see our daughter without any tubes for the first time in three months. She has come a LONG way since her world debut. We have so much to be thankful for this holiday season.

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These are just too small…

Kaily is starting to outgrow some of her preemie clothes! It is hard to believe, but true. Her legs can barely stretch out now in a couple of her sleepers. She has started to have some consistent weight gain. The doctors would like it to be at a slightly more rapid pace, but at least she isn’t sitting still. Her weight now is around 4 lbs. 12 oz.

As of a few days ago, she is off all oxygen help. On rare occasions, the nurses have to blow oxygen by her nose to help her out, but the canula is off now. She is loving having one less tube around. She continues to have some breathing issues, especially while eating, but she was having the same issues with the canula. They expect these issues to resolve themselves as she continues to grow.

Kaily had her eyes checked again earlier this week, and they continue to improve slowly. She will have them checked again in 10 days or so. Her eyes still have some developing to do, but the doctor doesn’t see anything that requires surgery now. We are really happy about this news.

She also had her hearing checked and everything in that department is good. She will be checked again in the springtime.

She felt that Thanksgiving in the NICU was a bit lame so we are hoping this is good motivation to get out of here before Christmas. Thanks for your interest and concern for our family. Please pray that Kaily will continue to get stronger and will be able to take all of her food from bottles. This would be a HUGE step in getting her home soon.

Enjoy the first full family pic, live from the NICU…

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MRSA, a new home, and the top is up…

Pretty much it was expected. Due to the length of time Kaily has been in the hospital, she has tested positive for MRSA. This isn’t the scary version you may have heard about in the news. To be honest the whole family probably has it now because we have spent so much time here. The MRSA will really have no effect on Kaily’s health at all. One effect of the MRSA is that whenever a doctor or nurse needs to work with her they get to wear a nice blue gown so as not to spread it to other patients. The other effect is that she was moved to a new room with a couple of other MRSA positive kids. After almost three months of being in Room One, she has moved to Room Two. She seems to be enjoying her new digs. We like it because she is in a corner bed, and we have more room to move around. Also, this room has been quieter, so far.

The other major event of the last week has been the top of her bed is now up. She is out of the box and enjoying the wind in her hair. She finally topped the four pound mark for an extended period of time and has been able to keep her body temperature at the correct spot, so the nurses raised the roof. It is nice to be able to get access to her easily. We can change her diapers now from the top instead of having to use her “portholes”.

Overall Kaily is doing really about the same except for the above. She still needs work on her breathing and eating, but she is on the right road. We were starting to think she might come home next week, but after a sobering conversation with a nurse and her doctors, we are hoping to be have her home by Christmas. Pray that she would be able to wait for Santa at home. We have no hard data on this, but we are telling her he doesn’t come to the NICU. Germs from all those chimneys don’t go over well here.

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Double it up…

Kailyn has doubled her birth weight, at least for today. She tends to gain weight some days and lose weight others. Fortunately she has been gaining weight more frequently than losing it. She now weighs around 4lbs 4oz.

Overall not much has changed for Kaily. She is still doing well and basically has the same needs as the last time we posted. She needs to grow, she needs to have her respiratory issues stabilize, and she needs to be taking more of her food orally as opposed to her feeding tube. To be honest, the key to her respiratory issues and the eating issues is for her to get bigger.

Kaily is more alert and interactive now than she has been. She enjoys her time out of her box, and we often have great conversations. For example…this weekend Michigan plays Ohio State in football, always a big deal…Graig was explaining why we don’t really like Ohio State football. Those who have more fond feelings for Ohio State football we can like, but not the football team itself…it is a fine line…anyways, he asked how she felt about Ohio State, and she promptly pooped. She is learning so well…go Blue!!

The girls had bath time the other day. Everyone really enjoyed the event and Kaily actually got clean in the process. Enjoy the pics.

Thanks again for peaking into our world.

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I don’t need help…make that not much help…

Kailyn is doing pretty well. Over the last few days the doctors have been trying to give Kaily some time with no oxygen support at all. They take the nasal canula off most of the time and then put it back on when she is eating or getting food through her tube. She is still working on breathing while she is eating. She has done pretty well with this plan so far. It is really good to see her with one less tube on her face. Right now she only has the feeding tube in all the time. We would love to be able to see her totally off the oxygen all the time by the time she can go home, and it looks like we are well on our way to see that happen.

Right now the biggest thing for Kaily to deal with is to gain weight. She has started to put on a few ounces over the last week, but the doctors would love to see more consistent weight gain. She tends to put on some weight and then lose some. She is approaching the 1800 gram mark (around 4 pounds) which, in the NICU world, is a nice milestone to pass as she can get the top of her isolette bed put up all the time. Right now she is at 3 pounds 14 ounces (1750 grams). So close…They are adding all sorts of goodies to her food to help her gain some weight, and it seems to be starting to work out. They had to work on a “formula” for a few days to find something that would work. Hey, the girl knows what she likes to eat.

Last week she had her eyes checked again, and so far they don’t see any need for surgery. Her eyes still don’t look great or even work right, but they aren’t supposed to yet. She was supposed to be in mom for three more weeks, and a lot happens in eye development in those last few weeks of pregnancy. She will have them looked at again in two weeks.

We still don’t know when she might come home. It appears as if it might be a few more weeks, but if she were to start packing on the ounces, she might get to head home sooner.

Thanks again for checking out our world…we really appreciate it!

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