Saturday, August 2nd - Up to 1 Ounce

Today, during rounds, it was decided to increase Kinley's bottle feeds from 25 ccs to 30 ccs. 30 ccs is the equivalent to one ounce. The remaining 60 ccs of Kinley's 90 cc feeding will continue to be delivered through her NG tube over 1 and 1/2 hours. This is the only change made to Kinley's care today. Her methadone, Prilosec, erythromycin, sodium chloride and vitamin with iron will all remain the same.

For the most part, Kinley is continuing to do a good job of keeping her food down. She has only thrown up one time since yesterday. It happened around 5:00 am and it was only about 10 ccs.

Between the two of us, Kathy is the first to attempt the 30 cc bottle feed with Kinley, at her 11:00 am feeding. We were not sure what to expect since Kinley had only had this amount one time before (by accident) and threw most of it back up. This time was different though, mom was there. Kinley ate all 30 ccs without any problems and she kept it down. The fact that she kept everything down is worth mentioning because this was the same feeding where Kinley received one of her vitamin with iron doses.

Kinley's 2:00 pm feeding did not go quite as smoothly as her 11:00 am feeding. Don't worry. There was no vomiting. Kinley was just tired. She took 20 of the 30 ccs from her bottle and simply wouldn't eat anymore because she kept falling asleep.

By 5:00 pm Kinley was feeling more like herself. She ate all 30 ccs and immediately took a nap. I took advantage of Kinley's nap time to read her some more Harry Potter.

After shift change, we returned to give Kinley her 8:00 pm feeding. She was a little fussy during her bottle and she did have one coughing session, but she was able to finish her bottle without having any come back up. We hope that Kinley can continue her non-vomiting streak through the night and into tomorrow. (Knock on wood.)

Friday, August 1st - Nasty Vitamins

Kinley had a great Thursday night and Friday morning of keeping her food down. She has not thrown up a single cc of milk since yesterday around noon. We hear that a majority of this lack of vomit is due to how much Kinley slept. She slept from 8:30 pm to midnight. Hopefully she can continue that little trend when she comes home.

There are a couple of changes made during rounds today. Kinley's methadone dose (which is only given once a day) will be lowered from 0.8 mg to 0.7 mg. Also, they will be increasing the fortification of Kinley's milk. It is currently fortified to increase the calories per ounce to 22, but they are going to give it a bit more and increase the calories per ounce to 24. This calorie change is based on Kinley's weight gain. Dr. O and Delores (nurse practitioner) do not feel that she is gaining weight fast enough. Delores always likes to point out that Kinley's arms and legs are not fat enough.

Around 11:15 am Kinley received one of her two (a while back they divided it into two doses because Kinley could not keep it down) beloved doses of vitamins with iron supplement. Soon after, I sit down with Kinley to feed her her 25 ccs bottle. Kinley finishes the entire bottle, but about 15 minutes later the iron supplement got the best of her and she threw up a good portion of what she just ate including her vitamins with iron. That vitamin with iron supplement must be some pretty nasty stuff. I am just glad that I don't have to take it.

Without the vitamins and iron beating up Kinley's inside, she took her 2:00 pm and 5:00 pm feedings like a champ. To try and get Kinley hooked as early as possible, I have started reading Harry Potter to her after she finishes her bottle feeds. I can't say that she stays awake the whole time, but music therapy told us that even when Kinley is asleep it is good for her to hear our voices.

After shift change it is time for Kinley's 8:00 pm bottle feed. Just like her earlier feedings, she took the entire bottle without incident. Kathy and I are overjoyed to see Kinley eating so well without, what felt like, constant vomiting. We know that a 90 cc bottle feed is pretty big, but seeing her eat like this gives us more hope that she will be able to come home without an NG tube. To be quite honest, we really don't want her to have to come home with an NG tube because that means that both of us will have to learn how to put one in. And we have seen how upset Kinley gets when the trained nurses do it.

Thursday, July 31st - Increasing Bottle Feed

Only one change during rounds today, Kinley's bottle feedings will be increase from 20 ccs to 25 ccs. The remaining 65 ccs (90 ccs is a full feeding) will be given through her NG tube over the course of 1 and 1/2 hours.

Kinley continued to vomit today, but we feel that she is getting better. As of 1:00 pm she has thrown up 4 times, 2 of them were around 15 ccs and the other 2 were more like "wet burps" and were around 2 ccs. The "wet burps," which both occurred during her bottle feeding, are why we feel that she is doing so much better. I don't really count those as vomiting.

Kinley's 2:00, 5:00 and 8:00 pm feedings (both bottle and NG) go smoothly with no vomiting or wet burps. Way to go Baby Blue Eyes!!! Kinley has slept a lot today (without the help of Tylenol) and that makes Kathy and I very happy for many reasons. First of all, it means that she is comfortable and not in any pain. Secondly, the combination of sleeping and keeping her food down will give her a much better chance of gaining weight.

July 30th Pictures

Here are some pictures that go along with yesterday's post.

TUMMY TIME!

Man, my head weighs a ton!


Just looking around.


This gravity thing is pretty tough to get used to.


Nancy, the OT, has been very impressed with how high Kinley can lift her head.


Working on rolling. (FYI - we roll her.)

READING WITH MOMMY!

"The Case of the Missing Hat" is one of Kathy's baby books.


Kinley loves being read to, especially by mom.


She finds it very relaxing.


Maybe too relaxing.

Wednesday, July 30th - A Little Better Day

When we arrived at the hospital today we were pleasantly surprised to hear that Kinley didn't throw up at all last night. Yea!! So far today she has only thrown up once at 6:00 am and it was around 15 ccs.

Kevin and I notice that Kinley is a lot less fussy today and more sleepy than she has been for the past couple of days. There are a couple of reasons for this. First of all, since Kinley had her 2 month shots yesterday, she is still getting Tylenol and will continue to get Tylenol for 24 hours after she received her shots. Secondly, her methadone dose was changed so that Kinley got her full 0.8mg dose all at 8:00 am this morning. Previously she had been getting 0.4mg twice daily. Dr. O told me yesterday that this is not really a weaning step, but 0.4mg is getting to be too small of a dose to measure correctly. We will have to see how Kinley handles not getting a second dose of methadone at 8:00 pm today. I like the idea of giving the dose in the morning though because that is typically when she is more irritable. Kinley has been doing a pretty good job at sleeping at night.

At 1:30 pm Nancy, the OT, came by to do some tummy time with Kinley and observe her 2:00 pm bottle. Kinley did really well with tummy time. She was able to hold her head up for a while and did some rolling. Before Kinley's 2:00 pm bottle Anita, Kinley's nurse for today, checks Kinley's residual and it was only 2ccs. Way to go Kinley, keep chowing down that milk! According to Anita, Kinley has not been too excited about her bottles today, and we see that when I tried to feed her. With some coaxing, Kinley takes about 17 ccs of her bottle and then throws up a good portion of it, probably around 10ccs. Kinley was not really into taking her bottle and was spitting out her milk before she started to swallow some of it. I just don't think she wanted to eat at the time and would have rather slept through the feeding. After her bottle I read to Kinley to try and help her relax and sleep a little.

Later on the the afternoon Delores, Kinley NNP, stops by to talk with us. Delores is not sure Kinley has a hiatal hernia. She is going to e-mail Dr. S, the surgeon who did Kinley's repair surgery, some x-ray pics to see what he thinks. The reason for the e-mail is because Dr. S is in Bolivia for a medical mission trip. Delores can see why other doctors might think Kinley has a hiatal hernia based on her x-ray. She explains that when Kinley had her repair surgery and her intestines were brought back down into her abdomen, her stomach was shifted a little to make room for the intestines. Kinley's stomach is more midline than normal. Delores also explains that this is one of the reasons that Kinley has reflux. Basically, food has a straight shot (going up and down) from her esophagus to her stomach. To keep an eye on her reflux and how it is affecting Kinley, she will now get weighed every night to monitor her weight gain. As long as Kinley is gaining weight we may just have to put up with a little vomit and spitting up until Kinley will hopefully outgrow some of her reflux.

It is now time for Kinley's 5:00 pm bottle and Kevin is up to feed her this time. Before the feeding, Anita checks Kinley's residual and again it was only 2 ccs! Kinley takes all of her 5:00 pm bottle for Kevin (she is still only getting 20ccs by bottle and 70cc via her NG tube for each feeding) and then fills her diaper with poop. We have to change her outfit because her poo overfilled her diaper, but we would rather have it come out that end than the other, so we are happy. Kevin holds Kinley for a while and then puts her in her crib with her boppy for a nap.

Tuesday, July 29th - More of the Same

Sorry everyone, but this post is going to pretty short and sweet. My brain feels pretty fried and I am having a hard time keeping everything straight in my head.

Overall, today has been a continuation of the past two days. Vomiting and Screaming. As of 9:30 pm she has thrown up 4 times, but none of them were guesstimated as being larger than 12 ccs. So she vomited more times today than yesterday, but in lesser quantity. Katie, Kinley's day nurse, described some of smaller amounts of throw up as "wet burps." Kinley is still very fussy and screams bloody murder whenever she is upset, but we may have found her kryptonite. If we lay Kinley in her boppy, with her right side down, and cover her in warm blankets she almost always falls asleep, for at least a little while. Though, she could also just be worn out from vomiting and screaming all day long. On a side note, I have changed my theory on what is causing Kinley so much discomfort. I no longer think that it is caused by gas. Both Kathy and Katie believe, and it makes more sense, that Kinley's vomiting and screaming is being caused by reflux.

No real substantial changes made during rounds, but there were two interesting ones. They changed Kinley's erythromycin doses from every 12 hours to every 8 hours, but adjusted the dosage so that she still receives the same amount over a 24 hour period. Since erythromycin increase stomach and intestine motility they want it in her system more consistently. A similar change will also be made with her methadone dose. Starting tomorrow (Wednesday) morning Kinley's methadone dose will be moved from every 12 hours to once every 24 hours, but that one dose will be doubled. So over a 24 hour period she will still be receiving the same amount of methadone.

Biggest new for today is that Kinley received her 2 month immunization shots. I will let you all use your imagination at how much she enjoyed them. She received 3 shots. Two in one thigh and one in the other thigh. The reason the shots had to go in her thighs is because they have to be injected directly into muscle. Her arms do not have enough muscle yet to receive a shot.

Biggest news from yesterday that did not get reported. All of Kinley's bedroom furniture was delivered and set up. We do not have pictures yet, but we will work to remedy that. This was the one silver lining that we can find from Kinley being born with CDH (congenital diaphragmatic hernia). It gave us plenty of time to order furniture. A free bit of advice to anyone expecting or planning on having a child soon, order your baby furniture early. The order for Kinley's furniture was placed on May 1st and it didn't arrive until yesterday.

So much for short and sweet. Her are a few pics of when Kinley was not vomiting or screaming.

Monday, July 28th - Less Vomit, More Screaming

I arrive early today to make sure that I am there for rounds. I want to be able to ask questions before any changes are put into effect. Katie is back today to take care of Kinley. Katie tells me that Kinley was fussy when she arrived (7:00 am), but she had her calmed down by the time I was there at 8:00 am. Kinley has already had her morning x-ray and it has already been reviewed also. They have not done rounds yet, but they will re-start Kinley's feedings at the same quantity (90 ccs over 1.5 hours), calorie level (22 per ounce) and frequency (every 3 hours) as yesterday. She can also take 20 of the 90 ccs by bottle. Katie starts Kinley's first feed at 8:00 am, but we do all 90 ccs through her NG tube because she is sleeping and we don't want to wake her. The peripheral IV in Kinley's right foot is looking irritated (skin is red around IV) so Katie takes it out now that Kinley is back on oral/NG feedings. With the IV out, Kinley's methadone doses are switched from IV to oral and they will still be given every 12 hours.

Kinley wakes up screaming and fussy around 8:45 am. I hold her to my chest from about 9 to 11 just trying to keep her calm. The trick this time was a heat pack on her belly and a lot of patting on her bottom. I truly believe that a lot of Kinley's fussiness has to do with gas and her intestines. We know that her intestines are working because she is pooing, but I am not sure how effectively they are working because a lot of her bowel movements seem to be pretty violent explosions in her pants.

There are no changes during rounds today due to Kinley's problems last night. Dr. O and Amber (nurse practitioner) do not feel that any of the vomiting yesterday was due to withdrawals. The NICU pharmacist says that any withdrawals from the changes made yesterday would not be seen for 3 days. (If none of the issues from yesterday were due to withdrawals then what is causing them?) Kinley was scheduled to receive her 2 month immunizations today, but due to last night they will postponed until later this week, probably tomorrow.

Nancy, from Occupational Therapy, stops by around 11:15 am to do some tummy time and bottle feeding with Kinley. Tummy time went okay, but Kinley did get a little fussy at the end. We decided to feed Kinley while she was in bed because she was laying on her side in an inclined position. Nancy said that she would never promote this feeding practice to parents, but it is a really good position for feeding. After only 15 ccs from her bottle Kinley threw up. We are guessing at least 20 ccs. (Kinley had 16 ccs of residual and her NG feed began at 11:00 am.) Katie and I change the bedding, cleaned Kinley up and got her into a new outfit.

That was the only time Kinley threw up today. All of her other bottle feedings went really well until they ended. As soon as Kinley's 20 ccs of bottle feeding are gone she gets extremely fussy. We are thinking that she either wants more to eat (by bottle) or she is having pretty bad reflux. After Kinley's 5:00 pm bottle feeding and burping she is practically inconsolable. Kathy tried to calm her down, then I tried and then Katie tried. None of us had great success. Kinley screamed almost non-stop from 5:30 pm to 6:45 pm. I know that I cannot paint the picture as if you were really there, but trust me, it was unbearable. Especially when it is your own child that you cannot console. The entire thing is heart wrenching. We hate not being able to make Kinley feel comfortable or happy. She screams for so long that her screams began to turn hoarse. I still feel that all of this pain and discomfort goes back to gas and her intestines, but we simply want someone to tell us what is wrong and how we go about fixing it.

Kathy stayed after shift change tonight and right at 8:00 pm Ingle, Kinley's night nurse, asks if Kathy wanted to feed Kinley her bottle. For the first time since being able to take bottles, Kinley refused to take any of it. She was pretty fussy and all she did was scream for the 10 minutes that they attempted the bottle feed. Kathy tried going back and forth with Kiney's binky and the bottle, and patting Kinley on her back and bottom, but nothing worked. Ingle and Kathy decided to just give Kinley the 20 ccs from her bottle by NG tube instead. Once Kathy was not trying to feed Kinley she was able to calm her down and Kinley took a little nap in her mommy's arms. The nap (and pause from screaming) did not last long because Kinley woke up around 8:45 pm and threw up. This time her NG tube came out and she had some poo in her diaper as well. Once Kathy and Ingle got Kinley all cleaned up and her NG back in, Kinley seemed to feel a bit better and dozed in and out of sleep until Kathy left. Lets hope Kinley is able to keep the rest of her food down tonight and doesn't feel the need to wake all the other babies in the NICU up with her screams overnight.

Sunday, July 27th - Lots and Lots of Vomit

Sorry for such a late post. To put it mildly, Kinley had a bad day and therefore the blog is playing catch-up.

Kinley has a new nurse today, Lynn. When I arrived Lynn informed me that Kinley was having a bit of a rough morning. At 6:00 am she threw up around 5 ccs of milk and then at 8:00 am she threw up again. The 8:00 am vomit was right after she had received her sodium chloride (electrolyte), erythromycin (stomach and intestine motility) and multi-vitamin with iron supplement doses.

I had arrived after rounds so Lynn gets me caught up on the changes I missed. Today we are going to try and feed Kinley all 90 ccs by bottle. Whatever she doesn't take by bottle will be given through her NG tube. This seems like an awfully large jump considering the most she has ever taken by bottle has been 15 ccs. Another big change is that they are going to move her methadone doses from every 12 hours to every 24 hours. All of her other medications will stay the same, but they will start to give her her multi-vitamin with iron at different times than her other medications in case that is too much for her stomach to handle.

At noon, it was time for Kinley's first attempt at a full feeding (90 ccs) by bottle. She took 35 ccs without any problems so we took a small burping break to try and get rid of any excess air in her stomach. After 4 or 5 pats on the back Kinley threw up just about everything she had just eaten onto my lap. (Good thing my jeans are so absorbent. We hardly had to get any towels dirty.) Lynn and I decide that we should probably give Kinley 75 ccs of milk (still being fortified to increase the calories to 22 per ounce) through her NG since she threw up most of what she had gotten from the bottle. While Lynn is getting the NG feed set up I head home to change my clothes.

I returned in time for Kinley's 3:00 pm feeding. While I was gone Kinley overfilled her diaper so much with poo that she had to have her outfit changed. Also while I was gone, Delores (nurse practitioner) came by and said that she did not want Kinley to take more than 20 ccs by bottle and have the remaining 70 ccs given through the NG tube. Kinley and I sat down for her 20 cc bottle and she ate every drop. She also kept it all down when I burped. My clean clothes were very happy about that.

Right around 5:00 pm (30 minutes after her 3:00 pm feeding had completed) Kinley woke up from her nap and vomited more than she had all day. Lynn and I were guessing that it was at least 30 ccs. My gut feeling is that this was from withdrawals because she was asleep right before it happened. My next thought was that she had too much air in her belly and that caused her to throw up. I know I have not said it in this post yet, but Kinley had been screaming her head off a good portion of the day and understandably so. She had just vomited for the fourth time today. Whenever Kinley screams she gulps air between yells and a portion of that air goes into her belly forcing it to expand. If her belly becomes too expanded her body will relieve the pressure by pushing it out and making her vomit. This option is a bit less likely since Kinley was asleep right before it happened. No matter what my thoughts are, the cause is still unknown. So an abdominal x-ray is ordered to try and help us figure out what is ailing Miss Kinley Melcher.

Delores and Dr. O had already left for the day so Ann, another nurse practitioner, and Dr. S had to review Kinley's x-ray. They notified Lynn that something in the x-ray was abnormal and that she should not give Kinley her 6:00 pm feeding. They also said that they would come over to Kinley's bed station to discuss the abnormality. Needless to say, this left a lot of horrifying thoughts floating inside my head. It felt like forever before Dr. S and Ann arrived. Kinley had been screaming at the top of her lungs the entire time, most likely due to hunger pains from throwing up a good portion of her 3:00 pm feeding and not receiving her 6:00 pm feeding. Dr. S explained that the abnormality was that one loop of Kinley's bowels was dilated. This means that there could be a bowel obstruction and they may need to do a barium study to find out for sure. But before they do that they will wait and take another x-ray after shift change to see if the dilated area has changed at all. In the meantime they had the charge nurse, Jennifer, place a peripheral IV in Kinley's right foot so they can give her fluids while she is not eating. They also ordered some IV methadone to give Kinley since she cannot have anything through her NG tube until her bowels look normal again, but the IV methadone will take a while to arrive. Dr. S moved Kinley's methadone doses back to every 12 hours in case she is having withdrawals.

After shift change we returned to find Kinley getting her x-rays. Kinley's methadone dose arrived during shift change and she seems much calmer now. Dr. S has reviewed the new x-rays and she came by Kinley's bed station to tell us what she sees. Kinley's bowel looked much better. The contents of the dilated area of bowel were now spread evenly throughout her bowels. Dr. S also informs us that Kinley has a hiatal hernia. This is brand new news to us, but apparently the surgeons noticed it when they were doing Kinley's diaphragm repair surgery, but no one told us about it until today. A hiatal hernia is when the hole in the diaphragm, for the esophagus to pass through, does not fit snugly around the esophagus. This leaves space for a portion of the stomach to push through causing reflux and vomiting. Hiatal hernias are common, even in healthy individuals, and for now, according to Dr. S, there is nothing we can do about it. (Sofia Miller, Kinley's CDH mentor, recently found out that she has a hiatal hernia also. Her parents found out that if the hiatal hernial is severe enough that medications cannot control its side effects then there is a surgery to fix it, but it is permanent and has a lot of possible complications with nasty side effects of their own.) Lastly, Dr. S tells us that Kinley will receive another x-ray in the morning to determine if, when, and how much Kinley might get to eat tomorrow.