Born May 25th, 2008
2:59 pm
6 pounds 13 ounces
Length 19 3/4 inches

Saturday, August 23, 2008

Saturday, August 23rd - Daily posts coming to an end

For the most part things have remained the same around here, which is why I think we will slowly stop posting every day. Don't worry, if anything out of the ordinary happens we will let you know. We will also post on days Kinley has a doctors appointment or something like that. I just feel like the blog has been so repetitive the last couple of days that it doesn't make much sense to say the same thing over and over again. Kinley ate...Kinley was fussy...Kinley threw up or didn't throw up. For now, until the next post, you can assume that nothing has changed with Kinley.

To recap yesterday and the beginning of today though, Kinley is still eating every 3 hours and still throwing up what I consider to be a lot. She is throwing up about 2 - 3 times per day. (Kinley eats 8 times per day.) Kinley is also really fussy when we feed her. It is like she is in pain, so I am going to ask the doctor on Monday about increasing her Prilosec dose for reflux. It is not just with her oral feeds that she has been throwing up either. Last night her 5 am feed was solely through her NG tube. I started the feed at 5 am and it was done by 6 am. Around 6:30 am Kinley threw up. There is no consistency with her episodes of throwing up, which is one of the reasons it is so frustrating for everyone. Kevin and I have started a log to keep track of everything, so if there is a pattern to this madness we can figure it out.

I do think it is worth mentioning how I woke up this morning. Kinley had been looking at her dad all night, but just before 6:30 am she turned and looked at me. Within seconds I had throw up on my pillow and on my arm. I would have woken up if Kinley had just cried. I don't know why she felt the need to throw up. Out came her NG tube and Kevin and I were ready to start the day. It is hard to get mad at Kinley after she has thrown up because I can just tell she feels so much better afterwards. She always has a big grin on her face just after throwing up.

Thursday, August 21, 2008

Thursday, August 21 - What goes in must come out

No problems to mention as far as overnight feeds go. Kinley woke up at 8 am for her bottle, so I took her downstairs and started feeding her. I wanted to let Kevin sleep since he was up really late last night with Kinley while I slept. Kinley had other plans though. She was super fussy for her 8 am bottle and about halfway through her feeding I found out why. She was working on a pooh the whole time. When she was finally able to go, it went everywhere, except in her diaper. We have not had any problems with her diapers before this incident, so I will just chalk this up to bad luck. Unfortunately, I had to wake Kevin up to help me clean up since it was all over Kinley, me and the area that I was feeding Kinley. After that mess was taken care of, Kevin took over feeding Kinley since I was not getting anywhere. Kevin was able to get Kinley to take about 2 oz, so we just gave about 40 mls through her tube. Everything was fine until about 10:00 am when Kinley threw up, and it was quite a bit I must add. Time to get out the bath tub and put her NG tube back in. If only Kinley knew that if she didn't throw up she wouldn't have to have her NG tube replaced all the time.

Kinley also happened to have a huge pooh during her 11 am bottle. Not quite as bad as last time. This episode only required a new outfit, not a full blown bath. Other than that, we laid her down in her Boppy (so her head would be elevated) to take a nap while her NG tube feed was going and that seemed to help her keep her food down.

All the other bottles for today have been pretty consistent. Kinley has been fussy for all feedings, but has taken about half of the 100 mls that are in each bottle. The rest was given through her tube. Kinley has also not vomited anymore today. YEA!!

Angela, Kinley's home health nurse came by for a visit this afternoon. I was anxious to see what Kinley's weight was since she has been throwing up so much lately. While we were in the hospital we were told that Kinley should gain about 30 grams per day. Angela said that anywhere between 18 and 30 grams is good though. After getting Kinley's current weight we calculated that Kinley had gained an average of 25 grams per day since Sunday, which was Angela's first visit. I was pretty happy with her weight gain, I thought it would be much worse with how much she has been throwing up lately. Everything eles looked good, so Angela will be back again on Monday to re-check Kinley.

Yesterday I was pretty stressed out with Kinley's feedings. After getting some much needed rest I was able to step back and look at everything in perspective. When Kinley was on ECMO and the ventilator I told myself that I would be happy to hear Kinley cry. (Not that I wanted her to be unhappy, but at least it meant that she was healthy enough to cry.) I also said that I would be happy when Kinley was able to eat orally, and at that point I would have been happy with 5 mls orally. I guess what I am trying to say is that Kinley has come a long way and she is one tough little girl. If she needs more time to get the bottle feeds down, then we will give her the time she needs. She deserves that after all she has been through. I am sure that with time and encouragement she will eventually prevail and we can take the NG tube out for good.

I also wanted to thank everyone for being so supportive of Kinley, Kevin and I during this difficult time. The thoughts, prayers and gestures have all been greatly appreciated. When Kinley does have one of her bad days, that we all have once in a while, it is so nice to know that there are so many people out there, family, friends and the community, encouraging her. I may have been focusing on the negative the past couple of days, but Kinley, Kevin and I are actually pretty lucky to have such support. Thank you, it really does mean so much!

Wednesday, August 20, 2008

Wednesday, August 20th - A day of ups and downs

I finally did it...I woke up at 2 am to start Kinley's tube feeding. (I won't mention the fact that I still slept through my alarm though. My alarm woke Kevin up and he ended up waking me up. Whatever works I guess. I just wish Kevin could have slept better since he had to work again today.)

I woke up for the day to Kinley coughing and spitting up a little in bed. It must have been from her 5 am feed that she had through her tube, but that was over at 6 am and we woke up around 6:20 am to the coughing. At least it wasn't anything major. We got cleaned up and went on with the day.

Kinley's bottle feeds today have been very sporadic. She took about half at 8 am and around 2 oz at 11 am, but then threw up a good portion. Since I was home by myself with Kinley I had to clean her up and put a new tube down by myself. It was not fun, but I did it. Kevin was home to feed Kinley at 2 pm and she took her whole bottle !! A while later she threw most of it back up. (See what I mean about the ups and downs today?) Kinley required a full on bath after this episode, and of course a new NG tube. Her 5 pm and 8 pm bottles were nothing spectacular, but at least they stayed down.

I had a little bit of a meltdown after Kinley's 2nd throw up of the day today. It is so hard to watch her struggle to eat from a bottle, and then after all that hard work to see it all come back up is heartbreaking. Not to mention the fact that by the time she is all cleaned up and calm again it is time to feed her again. She gets so fussy and acts like she hates eating from a bottle that I almost dread feeding times, and that is pretty much what our lives revolve around at this point. Thank goodness Kevin is more patient that I am and he was able to take care of Kinley tonight so that I could try and get some much needed sleep. Hopefully things will be better tomorrow.

Since Kinley has been fussy again today we were not able to get in tummy time again. We have been holding her so that she can work on her head control though, so at least she is getting that.

Sorry for the lack of pics lately

Mom and Dad giving Kinley a bath in our PCU room at Children's Mercy. This way Kinley will be all nice and clean for her trip home.

Here is Kinley after her bath. She is so excited about getting to finally go home. Can't you tell?

When we arrived home with Kinley there was a big sign and balloons to welcome home Kinley. Unfortunately it was past Kinley's feeding time when we got home, so this pic is not until the next day when the balloons were a little droopy.

I think Kinley has enjoyed trying out all her new toys. She really likes her swing.

Kobi, our Boxer, has been a terrific "big sister". She follows Kinley all around the house and watches over her.

Kinley is in her play yard, so Kobi is still protecting her. They are really cute together.

One thing I really wanted to do once Kinley came home was to go on a family walk. It was really nice to get to enjoy the fresh air.

Well, at least Kevin, Kobi and I enjoyed the fresh air. Not so sure about Kinley.

Wait a minute, Kinley is thinking this might not be too bad.

This was the closest pic I could get of Kinley smiling, but she did smile a few times on the walk. It must not have been that bad after all.

Here I am pushing Kinley! Finally, Kevin let me have a turn. Just kidding, we took turns the whole walk. It was very nice.

Well, Kinley survived her first walk with mom, dad and Kobi. If only we knew what she was thinking here.

Tuesday, August 19, 2008

Tuesday, August 19 - We are all very sleepy

Well, last night went about as well as the first night that we tried to do her 2 am feed. I know I set an alarm last night, but slept through it again. This is totally frustrating for me. I try to be the best mom and caretaker that I can be for Kinley, but I must be so exhausted (even more than I thought) because I have never been one to sleep through an alarm. In fact, I never really even hit the snooze button before all this, and I used to be somewhat of a morning person also. I will definitely need to call the discharge planner and Apria to see about getting set up to do more of a continuous feed at night.

After a rough start to the morning, Kinley's 5 am, 8 am, 11 am, 2 pm, 5 pm and 8 pm feeds all go as planned, nothing spectacular, but also no throw up. We are happy with that. I did call Kinley's social worker to see if we can get her set up in the Infant-Toddler program in Johnson County. This program would provide an occupational therapist to come out to our house and work with Kinley. I have been told that Kinley will qualify for the program and that someone will be out to our house early next week to evaluate her and get us started on the necessary paperwork. At this point hopefully they could work on Kinley's feedings as well as range of motion, rolling and tummy time. I also called Kinley's discharge nurse to see about getting set up to do continuous feeds at night, so hopefully I will hear back from her and we can get Kinley eating a little better.

Kinley has been pretty tired again today. Pretty much all she has done is eat and sleep, and if it weren't for me waking her up to eat I am sure she would have slept all day long. Now that we have been home for a couple of days and are starting to get into somewhat of a routine, Kevin and I need to start working with Kinley a little more doing tummy time. We have been so focused on her eating lately that we kind of forgot about tummy time. Maybe tomorrow she will be more awake and up for it.

The big news for today is that Kevin had to go to work for half a day. This meant that Kinley and I were on our own for a few hours. I was a little worried at first, but Kinley did good, so that made my job easier. I definitely like it when all three of us are home together though.

On a side note, Kinley has started to figure out where her mouth is and how to get her hand up to her mouth. I caught her a few times today sucking on her hand. That has to be some sort of milestone, right?

Monday, August 18, 2008

Monday, August 18th - Pediatrician visit

Last night went better than the first night at home. I think spreading out 2 feedings into 1 really helped everyone. Kinley was able to sleep through the night and Kevin and I were able to get about 4 hours of sleep in a row. Not too bad.

We had to wake Kinley up at 5 am for her bottle and she did pretty well. We still had to use the NG tube for about half of her feeding. She was still pretty tired and took a nap while the NG feed was going. In fact, at 8 am she was still sleeping and we had to wake her up again for her 8 am bottle. Kevin and I are pretty jealous of the amount of sleep Kinley is getting.

I was really afraid that Kinley would throw up after her 8 am bottle, because we were supposed to leave the house around 9 am for her doctor's appointment at 9:30 am. To my great surprise Kinley did not throw up and we finished her 8 am feeding (bottle plus NG) right about 9 am Since everything was already packed to go, we were on our way to Kinley's first pediatrician visit.

Kinley loves to take car rides we figured out. She falls asleep when the car is moving and wakes up and cries when we are stuck at a red light. It is pretty cute. It makes all the effort of packing up her stuff worth it to see her so happy and content in her car seat.

We pulled into the parking lot of the doctor's office at 9:35 am. Not to shabby for our first trip out of the house with Kinley. I went to check in while Kevin looked after Kinley. I appoligized for being a little late. (I forgot to mention earlier that we were actually supposed to be 15 minutes early since it was our very first appointment and there was paperwork to be done, but I knew that would never happen.) The nurse looked for Kinley's chart and for some reason it had not been pulled out yet, so she had to go look for it. That was odd, I thought. When the nurse came back she told me that I was not late at all, in fact we were about 24 hours early! For some reason I thought our appointment was on Monday all this time, but apparently it was on Tuesday. What an idiot I felt like. The doctor's office was really nice and said that they would get us in today since we were there already. We didn't even have to wait all that long before getting in to see the doctor. I was very impressed.

Kinley's appointment went well. She is 95% for length, 50% for weight and 40% for head circumference. The head circumference measurement was a little concerning for Kevin and I, especially after her abnormal head MRI, but the Dr. S didn't seem too concerned. This was just something to keep and eye on. Other than the NG tube and "battle wounds" that Kinley has, Dr. S said she looks like a normal 2 1/2 month old. That was great news.

Kevin and I have been trying to get some errands run since we brought Kinley home, but just can't seem to get them done. We thought maybe we could stop on the way home from the doctor's appointment, but by the time we left it was time to feed Kinley again, so we went straight home to do just that.

Kinley's 11 am feed started off great, but then ended with a crash and burn. After taking about 60 ccs from the bottle Kinley threw up again and out came the NG again. This is getting a little ridiculous. Kevin and I can't think of anything we are doing differently from when she was in the hospital and we were feeding her, but for some reason she is not keeping her food down well at all. I think we are going to try and step back a little. Maybe only feed her one ounce by bottle and tube feed the rest for now until we all get settled into being at home. If that doesn't work then we will have to come up with another plan. It is all trial and error at this point, but we are not giving up. One thing is for sure, Kevin is becoming an expert at putting NG tubes down. I bet he could do it in his sleep (if he ever got any sleep that is).

Kinley's 2 pm feed and 5 pm feed went better after Kevin and I regrouped and decided not to try and push Kinley to take most of her bottles. She didn't even take 3o ccs at her 2 pm feed, but her 5 pm feed she took about half. The good news is that when all was said and done (bottle plus NG) Kinley did not throw up either time.

Rounds for Kinley today were pretty late. Yes, I know that she is not in the hospital anymore, but around late afternoon we received a follow up call from some of Kinley's favorite nurses at Children's Mercy. They were just checking to see how we were doing and if we had any questions. Kevin and I knew what great care Kinley received while at Children's Mercy Hospital, but to get this much support after being discharged is above and beyond. Words can't express how grateful we are.

Around 6:30 pm Kevin and I found ourselves in a unique situation, we had finished Kinley's 5 pm bottle and it was not quite time for her 8 pm bottle. We actually had some down time. So what did we do with that time? Took Kinley on her first walk. Since Kinley really likes riding in her car seat we thought she might like a walk. Plus this was something that we could include Kobi, our dog in, so that is what we did. It was a really nice evening and everyone enjoyed getting outside for a little while.

After our walk it was time to feed Kinley her 8 pm bottle. Kevin and I did not do a very good job sticking with our new game plan of not pushing Kinley to eat her full bottle. She was doing so well and even smiling during her feeding that we let her keep going. She took about 70 ccs before throwing up, NG and all. I guess that is what we get for trusting a 2 1/2 month old. For her 11 pm feeding we tried a bottle again since she was still awake, but made sure this time to stop her before throwing up.

For Kinley's overnight feeds we are back to waking up every 3 hours during the night to set up new tube feeds. We were told that we should not do a 4 hour feed unless Kiley is hooked up to various monitors. Had we know this before hand we would not have done it last night, but no one mentioned that to us. We had even talked about possibly doing an even longer overnight feed while in the hospital. I am going to check with the discharge planner tomorrow to see if we can get he needed monitors through Apria, the home health equipment supplier, because I think it will end up being better for everyone.

I wil try to get some pics posted of Kinley's firsts today, but it is hard work just keeping up the blog. Hopefully I can get Kevin to help with the pics tomorrow.

Sunday, August 17, 2008

Sunday, August 17th - Our 1st full day home

Our first night with Kinley did not go as planned. Either the alarm we set for Kinley's 2 am feeding did not go off, or we slept through it. Either way, Kevin and I did not get Kinley's feeding going until closer to 4 am. We compressed it a little (gave it a little faster than we normally would) to try and get her closer to being back on schedule and ready to eat at 5 am. That was all fine and dandy. We gave her 5 am feeding closer to 6 am just to give Kinley's stomach a little more time to rest between feedings. It didn't work out like we had planned because during her 5 am feeding (which was given at 6 am) she threw up and out came her NG tube. Kevin and I felt so bad because it was our fault that we got her off schedule. We stopped her feeding, cleaned her up, cleaned her bedding and let her rest for a little while before Kevin put the NG tube back down.

Kinley's 8 am feeding went a little better. She took about half of her bottle orally and we had to give the remainder through the tube.

Around 10 am Angela, our home health nurse stopped by to see Kinley. She went over some paperwork with Kevin and I and let us know what a typical visit would be like with her in the future. Kinley has orders for the home health nurse to come visit 1 to 2 times a week. Angela will check Kinley's weight, length, head circumference, respiratory status, blood pressure and generally look Kinley over to make sure she is still doing well. Kevin and I feel a little more at ease knowing that there will still be a nurse that keeps tabs on Kinley while at home. When Angela weighed Kinley today she was up 40 grams from yesterday at the hospital. It is not completely accurate since she was weighed on 2 different scales, but it still made us feel good.

Kevin took Kinley upstairs to feed her at 11 am while I stayed and went over some more paperwork with Angela. Kinley took her regular half of her bottle and, again had to put the rest through the tube. Maybe Kinley is still tired and confused about her new surroundings. Kevin and I will try to give her time to adjust, but it will be really nice when Kinley is able to take full bottle feeds. Hopefully that is Kinley's future plan too.

Kinley took a nap in her swing after her 11 am bottle which was really nice because it gave Kevin and I time to eat brunch. We were pretty hungry by this time.

It is 2 pm and time to feed Kiney again. I feel like all we do is get ready to feed Kinley, feed Kinley, clean up from feeding Kinley and try and stay on top of all her meds in the meantime. Hopefully we can figure out what is bothering Kinley today because during her 2 pm feeding she threw up again and out came her NG tube again. Just like last time, we cleaned her up, let her rest, and then Kevin put the NG back in for a second time today.

Kevin and I have been trying to find a good time to get out of house to run some errands today, but cant seem to find a time that works. Tomorrow should be interesting because we have to leave house for a doctor appointment with Kinley's new pediatrician. I guess it is just me being a new mom, but I just keep thinking how difficult it will be to leave the house with her. How do you feed her when not at home? How will we tube feed Kinley in public if she doesn't finish all of her bottle orally? How many change of clothes do we need to pack for Kinley, Kevin and I in case she throws up again while we are out? It will be interesting to see if we pack everything we need.

Kevin and I have been trying to work out a schedule to mix milk and have it ready to go when Kinley needs it. Kinley is still getting breast milk fortified with Enfamil to increase the calories per ounce. The part that makes it difficult is that once milk is thawed it is only good for 24 hours and once it is mixed it is only good for 24 hours. Kevin and I have not been a good judge on how long it takes to thaw breast milk, so we always seem to have to use fresh milk at least for today. We are in the process of trying to get a routine worked out for this process and we got some good tips from Sofie's mom, so I am eager to see how this all goes tomorrow.

It seems like Kinley just finished her 5 pm bottle, but already it is 8 pm and time for her next bottle. I try feeding her this time and she took 65 ccs. When we were giving the remaining 30 ccs through her NG tube Kinley threw up again and lost her NG again. That makes 3 times today. It is pretty frustrating because we can't seem to fix the problem and it makes it really hard when we don't know what is causing the problem to begin with. Maybe the doctor can help us out tomorrow. This time Kinley threw up a lot and it went all over me and her. We have to give Kinley a full bath after this, her first real bath at home. I wish it was under better circumstances, but oh well.

We are going to try something different tonight with Kinley's feeds. Since Kinley gets a 95 cc feed at 11 pm and a 95 cc feed at 2 am that is a total of 190 ccs in 4 hours since tube feeds run for an hour. We are going to set the pump to run the 190 ccs in over 4 hours tonight to see if that works better for everyone. That way Kinley won't get too much milk at once and Kevin and I don't have to worry about 2 feedings during the middle of the night. We just have to get everything set up once and let the pump do the rest.

I guess every one's first day home as a new parent is difficult, but hopefully Kevin and I can figure this out because I really don't want another day like today, tomorrow. All Kevin and I want is to have Kinley happy and as healthy as possible at home.