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

Lilypie Third Birthday tickers

Monday, July 28, 2008

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.

5 comments:

Fer said...

I'm so sorry Kinley is having a tough time. I know what is like to have a CDH baby with a severe reflux. My son, Juan pablo, is almost 14 months old and he vomits every single day, the worse days he ended vomiting 15 times. It was aweful because, like you said, you feel so helpless and you just want to make your baby feel better. Sometimes you can't and that makes you so sad and frustrated. All I can tell you is that I'll be praying for you. I'm here if you want to email me (maferarceamare@gmail.com) and if you want to take a look at our blog, I'd be happy to send you an invite.

Melissa said...

Poor little thing....she's been through so much. We'll pray that she is able to relax and have a comfortable day/night and give her tummy a break- I know it must be miserable to watch her go through that. We're thinking of you guys. Maybe we can stop and see you next week- Jack has an appt. so maybe we can pop up, if you guys are still there & you guys have time. Let us know if there's anything we can bring you or do for you before next week- I could bring it to the hospital when we come.

Melissa

Melissa

MadelonLowellScripter said...

No, we weren't there but your word description made it real for me! Being parents is rewarding but also tough.Knowing you love her did bring Kinley comfort...being there brought her comfort evn if it wore you out...your touchs are important...hang tough..you're doing all the right things..Am glad you have so many CDH support(sorry they too have been there too). love to all..lms+families

Jen said...

Sounds so familiar - I'd guess reflux is mostly to blame, but don't discount your intuition about withdrawals. It may very well be a combo of both. You know her best! I don't believe the 3 day thing. We almost always noticed withdrawal symptoms about 24 hours after a change had been made. Hope for better, happier days for Kinley very soon. I want to see some Kinley smiles in the next few weeks!!

The Millers

Jen said...

P.S. You'd think sweatpants would be more absorbant than jeans, but FYI, they're not. Neither are pillows.

Jen Miller