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.

Khloe update days 98, 99, 100, 101, 102, 103, 104, 105, 106, 107, 108, and 109...leaps and bounds!!!

It's been a little bit of a wait from the last post, but I think that what I'm about to tell everyone will be worth the wait. First of all, Khloe is getting so big. She is now 7 lbs 5 oz! Unfortunately she is very short for her age and I'm not sure the exact length but I believe she is about 17.5 inches long. She is eating 2 oz (60 mL) of milk and she has been doing very well with her bottles, although not good enough to go home. The bottles are still kind of hit and miss and she has only been awake for about every other bottle and the ones she is awake for, she usually takes most or all of it, but the last few days she has been struggling a little, which is probabaly due to the bad case of Thrush she has developed and I can't say I blame her because I'm sure it's very painful. I'm not sure if I mentioned it on here, but a little over a week ago I beleive, her oxygen was reduced to 1/4 liter on her nasal canula and she did awesome so Monday afternoon they took her off oxygen completely, so she is now officially breathing completely on her own without any respiratory support of any kind!!! She has been doing great and hasn't had any "AB's" and only minor desats when she gets mad or fussy and a few when she eats, but that's normal. Her eyes were the same last week and she will have another eye exam later today (Wednesday), but now that she's off oxygen, her eyes don't need to be better to go home. Now all we are waiting on to go home is for her to eat all her bottles so everyone please cross your fingers and say some prayers because we are more than ready to go home after 109 days in the NBICU. Unfortunately this week she lost three of her four primary nurses which was sad and a big shock to us, though I'm not going to tell the story on here for lack of time. Well that's all for now so check back later. Thanks for all the prayers and love.

Khloe Days 90, 91, 92, 93, 94, 95, 96, and 97...slow but sure!

Well it's been another long wait for this post and here it is. Some of you may have been on edge waiting for more news and unfortunately I don't have too much to report, but what I do have to tell you is pretty exciting, at least most of it is. To start off, Khloe is still getting huge. She's now like a normal baby and weighs just under 6 lbs 7 oz. She is gaining weight like a maniac and it definately shows because she has a double chin, chubby little cheeks, and many little rolls even on the back of her neck. She is eating 53 mL of milk and she has made huge progress with bottlefeeding in a week. They are giving her a bottle about every 3 hours at the time of her cares and she has been doing pretty good, although most of the time it's hit and miss. On Tuesday she ate all, or close to it, of just about every bottle they gave her, but then on Wednesday and today, she has been wore out and hasn't even ate half most of the time, so tonight they are just going to try every other and see if she does a little better. She had another eye appointment on Wednesday. The good news is they haven't gotten worse and are the same and the bad news is they haven't gotten any better and are the same. We are really anxious to go home and for that to happen either her eyes need to get better and she can be sent home on oxygen or she needs to get off oxygen support completely and we can just take to to an eye appointment once a week and she needs to start eating all her bottles. For the last week and a half to two weeks Khloe has been having high blood pressure and they have been somewhat concerned. They weren't sure what has been causing it so they have done some blood tests, which came back negative, and some urine tests to test her kidneys, which were negative as well, so they are still unsure of the cause. Fortunately the last couple days her blood pressure has been lower so for now they are going to keep monitoring her and if it goes back up they will probably start some meds. We are really longing to go home and we are more  than ready because 3 months is more time than we wanted to have Khloe in the hospital and live in a camp trailer and unfortunately they are projecting another 2 or 3 or 4 weeks before we can take her home. This whole ordeal has been quite and experience and they really can do amazing things with babies born so young. That's it for now so check back later. Thanks for all the love and prayers.

Khloe Days 87, 88, and 89...firsts and milestones!

Well the last few days have been somewhat exciting. Khloe has been doing great and has made a lot of progress. First of all, she is getting huge. She's about 5 lbs 13 oz and she's now getting 50 mL of milk. We have, for now, given up on trying to breastfeed and been sticking to bottlefeeding, but that's probable just until Khloe is out of the hospital and we'll probably do both once she's home. She is doing so good on the bottle. Monday and Tuesday she ate about 75% of at least one of the two bottles each day and Today (Wednesday) she ate her whole bottle (50 mL). That is great considering they increased her milk to 50 mL today. She is really coming along and I hope this means that we only have a few more weeks before she's home because 3 months is more time in the hospital than we would have liked and we're more than ready to leave. Her eye appintment today was the same as last week, Stage 2 Zone 2. It's good that her eyes haven't gotten worse, but it's also frusterating that they aren't getting any better. Shelbie gave her another bath today and Khloe pooped in the tub for the first time! I wish I was there because according to how Shelbie told me about it, it was pretty comical. That's it for now, so check back later. Thanks for all the love and prayers.

Khloe Days 80, 81, 82, 83, 84, 85, and 86....the wait continues!

Well I think this has been the longest break between posts so far and I wish I had more to report on. Khloe is doing great as usual. She is getting 47 mL of milk now which is a little over an ounce and a half. She is doing much better at breastfeeding and they have even started alternating with bottlefeeding. She has made a lot of progress learning to eat on her own, but she still has a long way to go. Learning to eat is the longest part of the whole NICU experience and we've been told, on average, it can take up to 8 weeks for babies to finally learn and eat well enough to go home and sometimes it can be even longer, though I hope it's not. I think we're through the 3rd or 4th week to learning and I hope she's on track, but we'll get there either way. Khloe's eye appointment this week went good. Her eyes are still the same as the week before, Stage 2 Zone 2, which is good, but unfortunately it means they haven't gotten better either. Aside from learning to eat, her eyes is the only other thing we're waiting on for her to go home. One of two things needs to happen, either her eyes need to be fully vascularized so she can be sent home on oxygen or she needs to be off oxygen support and breathing completely on her own and she can go home without her eyes being vascularized and we would have to come up once a week for her eye appointments. The reason they won't send her home on oxygen with her eyes not being vascularized is that the oxygen has such a high concentration of oxygen that it damages eyes that aren't fully vascularized. As you can see, day we take her home completely depends on her now and is out of the hands of me, Shelbie, or the hospital staff so I hope she's stubborn and really starts moving forward. She is still getting so big and as of tonight she is 5 lbs 9 oz! She is such a little chunk now and she's like a normal baby, she even has a double chin along with her daddy's big head. She is so cute! That's all for now so check back later. Thanks for all the prayers and love.

Khloe's NICU Summer Photo Shoot!

Here are the pics I promised from Khloe NICU Summer Photo Shoot!

Khloe Days 78 and 79...getting big!

Well tonight's post is going to be a short one. Khloe is doing great! Her feeds have been increased once again and she is now getting 41 mL of milk. The milk was being given to her over a period of 45 minutes, but because she is getting so much, her body was digesting it quick enough and it was making her sick and she was throwing up so they increased it back to an hour and she has been doing much better. She has been getting a lot of formula lately because Shelbie was gone for a couple days and it has made her diapers very stinky. I don't mind it though because a few days ago she was constipated for two days and didn't have a messy diaper at all so I'd much rather she have very stinky diapers. On the last post I said that they wouldn't be reducing her respiratory support anymore until just before she goes home, but I was wrong. They have lowered it from 1 liter to a 1/2 liter and she is doing great. If she keeps going at this rate, I don't think she'll have to go home on oxygen at all so cross you fingers. She is getting so big as of last night she was 5 lbs and tonight she lost 5 grams so she's just under 5 lbs now. She is so stinkin' cute and I can't wait to take her home and show her off. Well that's all for now so check back later. Thanks for all the lover and prayers.

Khloe update days 72, 73, 74, 75, 76, and 77....getting closer all the time!

Well once again I'm sorry for the long wait between posts. I had a week off from work so I got very sidetracked spending time with Khloe and Shelbie. Khloe is getting so big and cute. She is doing better than ever. She is still on 1 liter on her high flow nasal canula and we've been told that's what she'll stay on until just before she goes home. She is still learning to breastfeed and it's a slow process, but she'll get it eventually. Breastfeeding is all we are really waiting on to take her home, well that and waiting for her eyes to develop, so it's all pretty much up to her when we go home. I just hope it's not too much longer. Her eyes have gotten worse. They were in Stage 1 and Zone 2, but this week they are in Stage 2 and Zone 2, so I hope that doesn't mean a longer stay. If we could just keep her oxygen at a good level her eyes would get better, but she has these desaturations so they turn her oxygen up and then she's high, so I hope it get's figured out soon. She is getting 39 mL of milk and she is still gaining weight like a champ. They have even had to start giving her formula because she is eating so much and she runs out of breastmilk. As of tonight she weighs 4 lbs 13 oz, that is 7 oz up from 6 days ago when I posted last. For the last couple weeks the NICU has been taking summer pictures of the babies that are off the ventilators with them dressed in cute summer clothes and this week Khloe got hers taken and it is way cute. She is in a little hula skirt with a bow in her hair. I was hoping to get them posted tonight, but found out Shelbie accidentally took them to Ephraim with her so I will get them on here as soon as possible. She is doing so good and making her mommy and daddy proud. It was really great having a week off. We did a lot of shopping at yard sales and the D.I. and kid to kid. We got a lot of cute books for Khloe, including a lot of Disney princess books and we also got her a lot of cute outfits, but the best part of my time off was snuggling my daughter. It's amazing how nothing else in the world matters when I have her laying on my chest. It just makes everything right in the world and nothing can get me down. I love that little girl so much and I can't wait to take her home. That's about it for now so check back soon. Thanks for all the love and prayers.

Khloe update days 66, 67, 68, 69, 70, and 71...one step closer!

First I want to appologize for the long wait for this post. I've had a busy week and every time I tried doing it, I got sidetracked. Well it's been an exciting week in the life of Khloe! She is now 10 weeks old and the time has flown by, well for me at lest. Most of you don't know it, but she was being given caffeine to help her breathe and now she is old enough that she shouldn't need it so she has been taken off it completely. She is doing great in the open crib and is still holding her temperature wonderfully. She is doing so good that they have moved her back to room 6 which is one of the "big kid" rooms and she is definitely now one of the big kids. As most of you know, her milk was being fortified to 27 calories and it has made her gain weight so fast that they have reduced it to 24 calories. As of tonight she is 4 lbs 6 oz and is getting more and more cute little rolls. Our little girl is getting so big. She is learning to breastfeed and she is a natural. She is actually surprising the nurses, so I hope this means she'll be going home sooner rather than later. Her respiratory support has been reduced several times this week, the last of which was yesterday and she is now on 1 liter on the high flow nasal canula and the next step is low flow which I believe is the last step before being completely on her own. She is taking a liking to music and there have been a few nights that her nurses have had to put on some music to keep her calm. She had another eye appointment this week and her eyes are still in stage 1 and zone 2, but they have actually improved a little bit. She is definitely a little stinker and she thinks it is very funny to poop and pee on mommmy and daddy when we change her diapers and it usually takes 2 or 3 diapers to change her, but we wouldn't change it for the world. She is getting 35 mL of milk and as usual she is doing great with it. I think that is all for now so check back later. Thanks for all the love and prayers.

Khloe Update days 62, 63, 64, and 65....halfway there!!!

Well just as I predicted on Wednesday, Khloe hit the 4 lb mark this weekend on Sunday! She is officially halfway through the requirements to go home! She is holdinig her own body heat very well and hasn't had any instances where her temperature went down and she is 4 lbs on the dot! We have started working on teaching her to feed and after only two short lessons, she is starting to get the idea slightly, all due to the fact that she loves her binki I'm sure. She loves it so much in fact that she decided to show her true redhead personality on Saturday and scream whenever Libby tried takinig it away and naturally she calmed down when she got it back. She must be my daughter not only due to the fact that she looks exactly like me, but because she has my charminig redhead personality! Hopefully she can learn to eat fairly quickly so we just need to worry about getting her off her respiratory support, then she is home free! Oh, and hopefully she does this all in the next 5 weeks because that is Septemeber 11th and her actual due date and that's the date they told us that they kind of use as a guestimate to go home, but they also said it could be later or sooner. Overall though halfway there ain't bad at all in my book. She's been doing really well and getting bigger and chubbier all the time. She did get a slight yeast infection this week as well as an eye infection, but they have been treating the yeast with a cream and it is cleared up and they started treating her eyes with slightly gelatinous medicated eye drops so hopefully that will clear up soon as well. She's getting 35 mL of milk and it definately shows because she is gaining weight quick, sometimes almost 2 oz a day. This weekend Shelbie and I made an excursion back home for our niece's baby blessing and decided to clean our apartment a bit and get her room ready for her up and hopefully soon coming journey home. It still has a little work that needs to be done but we got a bulk of it done and by that I mean her clothes are put away and all her gadgets like her swing, high chair, and bassonet put together. We can't wait have her home so we can finally use all that stuff. All in all things are going great as usual and Khloe is really moving forward so check back for more updates. Thanks for all the prayers and love.

Khloe in her crib!

Here are some pics of Khloe in her crib!

Khloe update days 59, 60, and 61...a huge leap forward!!!

Well you've all been waiting for some really exciting news and here it is. First of all today, august 3rd, khloe is 2 months old! The time is sure starting to fly by even though it may not seem like it to some. Now the most exciting stuff. On Monday, August 1st, Khloe was moved to an open crib! This is a huge step and really exciting because now we can interact with her more than ever and even her grandparents can hold her now, which I'm sure they all can't wait to do. Another reason for the excitement is that she has officially achieved one of the four qualifications to go home and that is maintaining her own body heat. I got off work really early Monday night and spent most of the morning holding Khloe and taking pictures so I will post the pics on here as soon as possible so you can all see how big and cute she is getting. She is getting 32 mL of milk and is doing well with her feedings at least that's what I think because it takes about 4 diapers for one diaper change because she thinks it's funny to dirty the new one before we get it done up, ha ha. As of tonight, Wednesday August 3rd, Khloe weighs 3 lbs 13.5 oz and I expect that she will reach the 4 lb mark this weekend which is another huge step because it is another of the 4 qualifications to go home. Today she had another eye exam and her eyes have gotten better since last week. As you may remember, last week her eyes were in Stage 2 and Zone 1 and this week her eyes have regressed and are now in Stage 1 and Zone 2 which is a really good sign. Well that's it for now and there's a lot of exciting stuff going on so check back laterfor more news. Thanks for all the love and prayers.

Pictures of Khloe I've been promising!

Here are a bunch of pictures of Khloe over the last few weeks that I've been promising.

Khloe days 56, 57, and 58...doing better than ever!

The last few days have been the most exciting days in a long long time. They have been weening Khloe on her incubator by turning down the temperature and she has been holding her own temperature! She has been doing this for a few days now and they put a onesie on her yesterday but took it off before I could see it because they wanted to watch her breathing, but her primary nurse, Chris, put one on her tonight and I got some cute pictures that are going on the blog along with all the other pics I've been promising for weeks. This is great news that she is holding her own temperature because regulating her own body heat is one of the four requirements to go home and if she keeps holding her own heat they are hoping to put her in an open crib this week which is a huge step forward and that means that both sets of her grandparents will be able to hold her. She is doing good on the high flow nasal canula and surprisingly she hasn't had very many "AB's" but she has had a bunch of desaturations. It was so hard to hold her with the CPAP because of all the tubing and doing "skin to skin" was impossible, but now that she is on the high flow I got to hold her and do "skin to skin" for the 3rd and 4th time yesterday and today! She is getting so big and chubby. Tonight she wighed in at a grand total of 1673 grams which is 3 grams shy of 3 lbs 11 oz and She is about 15.5 in long. When I changed her diaper yesterday, I realized just how big she's getting because I used to be able to fit my whole hand around her legs and bum, and now I have to just lift up her legs because she's got some rolls and her bum is no longer skin and bone, now she's got a little padded tooshy. She's eating really well and now she's up to 32 mL of milk and hopefully this week or so she will start learning how to breastfeed which is another one of the 4 requirements to go home along with being a least 4 lbs and breathing on her own but she can be sent home on an oxygen tank. She's doing so good and hopefully she'll keep doing so good that we get to take her home early so cross your fingers. That's all for now so check back later. Thanks for all the prayers and love.