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.
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4 comments:
I'm sorry about your feeding challenges. It is so hard to see our babes struggle so much. I know you would do anything humanly possible for her.
When Livi was in the hospital and first breastfeeding she would throw up also. When she came home her reflux was more silent reflux without spitting up and I noticed it seemed worse when she went from nursing position, to upright to abruptly. She seemed to do better when I let her stay in one position after feeding before I moved her to upright. The surgeon thought this was odd when I told him but it worked for Livi so I tried to keep doing it.
I guess my point is that try all kinds of things. It may not be what the docs have said will work but all these kids are different and what works for one, won't for the other.
You are awesome, strong parents and she is so lucky to have you and you her.
Amy
I reread my post and I am so sorry about my spelling/grammatical errors. I was multi-tasking with three kids :).
Hang in there, I know it's tough. I was so grateful to have Sofie home and healthy, but that doesn't take away the overwhelming part of having not only a new baby at home, but a baby with a lot of special needs. I had more than my share of meltdowns. Lucky for me, Kenny was my rock, as it sounds like Kevin is for you. This is definitely a team effort at home, and Kinley has 2 very wonderful parents to take care of her and each other. You can do it - I promise it does get better!!
Jen Miller
I know the feeling and I am sorry you have to go through this and so does Kinely. My son, Juan pablo, besides his CDH also has severe reflux and he vomits and vomits all day long. It's very frustrating and it saddens me so much watching my son suffer like this.
If you have time and if you like, you can take a look at our family blog. Since it's private, I'll have to send you an invite. Just email me at maferarceamare@gmail.com
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