Khloe Update Days 145 through 147....HOME SWEET HOME!!!

After 21 weeks or 147 days, WE ARE HOME!!! Khloe was born on Friday June 3, 2011 weighing 1 lb 5 oz and on Friday October 28, 2011 Khloe was discharged from the hospital and went home weighing 10 lbs. Wednesday her eye exam went great and we found out that her eyes are getting better and her R.O.P. is regressing. She is now Stage 3 Zone 3. Thursday we went to the hospital to learn how to change her G-tube dressing and her doctor came to her bed to do rounds and surprised us by saying she was going home Friday. We are so thrilled to be out of the hospital and things are going great. She has been home for two days now and she has adjusted well. She is doing about the same with her bottles, but thanks to her G-tube, we don't have to worry about her not getting all her calories and nutrients. She is such a joy and I can't describe how nice it is to not have a nurse looking over our shoulders at all times and we can go anywhere with her without being tied down by all sorts of sensors. After almost 5 months we truly feel like parents at last. We will miss all the friends we made in the NBICU and we hope to keep in touch with all of you. Once again we want to thank everyone who has helped us through this difficult time. Thanks for all the prayers and love. It's good to be home!

Khloe Update Days 137 through 144...Post surgery and many heart felt thank yous!

I'm sure everyone has been anxious to hear about the surgery since my last post and now your wait is over. Monday, Khloe had her surgery for her Gastrostomy Tube (G-tube). Shelbie and I were nervous and on edge all morning. The surgery was scheduled for noon at Primary Children's so Shelbie and I were there around 9 so we could snuggle with her before she was sedated and intubated. We didn't want to leave her, so we stayed for the intubation and it was so sad. I've never heard my little girl cry like that and I got pretty teary eyed listening to it. The flight came about 11 to get her ready to go and they were told to have her there precisely at 12 so when the time came we were on our way and we got to the bottom level when the flight team was told it was pushed back to 12:30 so we headed back to the NICU where the doctor performing the surgery told us there was some miscommunication and they were now doing the surgery right in the NICU and it had been pushed back to 2:00. Shelbie was very upset, but I was relieved that we could stay there. The surgery was a very quick procedure and only took about 7 to 10 minutes to perform, but with all the preperations the whole wait was an hour to and hour and a half. It all went very smooth and Khloe was knocked out for the rest of the day. She was extrubated around 10 PM after we left and she has been doing very well. She is pretty much back to her old self and they have stopped giving her Tylenol for the pain and she has managed it really well according to Shelbie and has been just a little fussy. Khloe is sick of being on her back. She is so used to being held and snuggled, but we can't do any of that right now so she gets pretty angy. They started off slowly increasing her milk every 3 hours and she is now getting her full feed through the tube and Wednesday, they will start offering her the bottle again. To most people the thought of her feeding tube is kind of scary and it is to me and Shelbie too, but it will be a good thing because she is just not up to par when it comes to being bottle fed and we are told that if her eye appointment goes well on Wednesday, we could possibly taker her home this weekend so cross your fingers. We are excited to finally be able to see the end of this whole journey and can't wait to go home. We have had so many experiences with no shortage of blessings and we want to thank everyone who has been there for us physically and spiritually. So many of you have been praying for our family and those prayers have been felt every day. Many have brought us food and donated money and all of it has gone to a good cause and been much appreciated. Shelbie, Khloe, and myself are so lucky to have such loving and caring family and friends. Thank you all for everything.

Khloe Upday Days 122 through 136...closer than ever!

I know a lot of people have been asking and wondering why I haven't posted in about two weeks and I'm sorry to keep you all on edge. It definately hasn't been for a lack of news. I just haven't seemed to find the time to do it, but now the wait is over. Khloe is doing very well, but she hasn't changed much since the last post, aside from her weight anyway. She weighs 9 lbs 8 oz! She is such a little chunker and cuter than ever. Her eyes are still Stage 3 Zone 2 and hopefully they will be a little better this week for her eye exam. Her bottle are still hit and miss, but that will not be much of a problem very soon. On the October 24th, Khloe has surgery scheduled to have the Gastronomy tube (G-tube) put in her stomach. On Friday, Shelbie and I are taking the class that tells us how to use it and care for it. This may sound like scary news to most everyone, but it's a very minor and simple surgery and a relief to me and Shelbie because this means that she could be going home anywhere from 5 to 10 days after the surgery. For the first time Shelbie and I can really start to see the light at the end of the tunnel. We are more than ready to go home. As long as we get some good news about her eyes on Wednesday, with a little luck, we will hopefully be home in about two weeks. That's about all right now, so in the mean time here are some pictures to enjoy! Thanks for all the prayers and love.

Khloe Update Days 110 thru 121...Sad times and setbacks!

I'm sure some of you have been on edge about what will happen next in the life of Khloe. So far it has been fairly smooth sailing with few bumps in the road and most of them were early on, but this last week, that has all changed. Khloe has been doing great. She got off oxygen as most of you know and was making great progress with her bottles and doing better every day. Around the day of our last post which was on the morning of September 21, Khloe developed a bad case of Thrush. For those of you who may not know what this is, it is a yeast infection that affects the tongue and is painful and on top of that she had also developed a yeast infection on her bum. Despite her new illness, she still did ok with her bottles, though not as good as she was doing.  They started her on antibiotics immediately on her tongue and a cream for her bum, which failed to take care of her Thrush, but her bum cleared up quickly, so they tried another for her Thrush which had the same outcome. Having tried two very strong and effective antibiotics and failed, they decided to try a third approach which is a non-prescription old school over the counter medicine called Gentian Violet and when I say old school I'm talking mid 1800's. Gentian Violet is basically a dye they use in inks for pens and printer ink as well as using it to dye bacteria on those glass slides in hospital labs so they can study them under a microscope. It was found to have and healing and anti-bacterial effects and was used quite commonly for Thrush and on open wounds, and the only real side effect is temporary purple dying of the mouth. A day or two after starting this third approach Khloe had started doing worse with her bottles and stopped taking her binky, which she loved, completely. About Tuesday, I think it was, she stopped eating completely and had to have all her feeds through the tube in her nose and started having serveral "AB's". They stopped the medicine and found that it had worked to kill the Thrush and started treating her for reflux, thinking it was causing her throat and mouth to hurt. During this time she has been very irritable and sad and I can't say I blame her. Saturday she had a new development, some sort of canker sores on the sides of her tongue. They are not sure exactly what caused the sores, but the doctors have a theory that it was the Gentian Violet because they researched it and they had to go back to 1970 to find any information regarding this and it was found that it had occurred on a few times. They are having a Dermatologist check it out just to make sure so they have a second oppinion. She has been doing a little better since Saturday and has taken some of her bottle, though it is very minimal and she still won't take her binky and her "AB's have pretty much stopped. If she doesn't get better with her bottles, they will put a G-tube in her stomach which is surgically installed in her stomach and has a hookup on the outside of her body so when we feed her she can drink as much as she wants and the rest we would hook up to the G-tube and it would go directly into her stomach. It's much safer than the tube in her nose and would only be temporary and would be taken out once she starts eating all her bottle. It's a pretty minor procedure and they do it right in the NICU at her bedside and we've been told the babies recover pretty quickly from it, but she will have to be put back on a ventilator for the procedure. This last week has delayed her going home for a while and we are not sure when we will be home. She is making improvement and hopefully will bounce right back. She is now 4 months old today, October 3rd, and she weighs 8 lbs 7 oz. She is 19 inches long and her head is 14 inches around. She is so big, so short, and so cute. I will try and get some recent pictures on her soon so keep checking back and in the mean time, please keep her in your prayers. That's all for now. Thanks for all the love and prayers.