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.
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5 comments:
Hi there,
I came across your CDH blog through Sofie's. First off congratulations on your daughter coming home. I brought my little CDH guy home December 24th when he was one month old. He is my first baby. Try not to be too tough on yourself about sleeping through or not setting one alarm. Now that you are out of the hospital you are going through what all new parents do in the first days of their baby's life only the stress, worry, and effort is multiplied by at least 10 to take care of all your sweet girl's extra special needs.
Good luck with today. If you actually make it on time to your doctor's appt I will be in awe as I know no new parent who ever has. I suspect doctor's offices are used to that.
Af for the throw up I used to have tons of receiving blankets on hand to mop up what I could if extra changes of clothes ran out or if there was no time for a wardrobe change. Also a receiving blaket pretty much lived draped over my shoulder whenever I held my son.
Is Kinley crib mattress elevated at all? I found that helped minmize my son's throwing up. You can elevate simply by putting books under two legs or there are pillow wedges available that you can put under the mattress sheet.
This website has a baby timer that I depended on completely for the first 6 months of his life. It really helped me to stay on top of his feedings and meds. http://www.itzbeen.com/
You guys will settle into a routine soon and not find it all so overwhelming. I wish you all the best.
I think everybody's first night home is pretty crazy, so don't feel bad. We have slept through our share of feedings too. For bed changes, especially during the middle of the night, we got a couple of "the ultimate crib sheets" from Babies R Us. It just snaps on and off, so you don't have to wrestle with the regular crib sheet and bumper. So much easier - plus saves your nice sheets! And for the record we were over 30 minutes late to our first pediatrician's appt! They didn't say anything and were so nice. I'm sure they're used to it. Before you know it, you'll be out and about with no trouble at all. Does Apria have a travel bag for the feeding pump? They have travel bags for all their monitors, and I've seen other parents with travel bags for feeding pumps at the Dr's offices. That may make it easier to tote around for feedings on the go. You may want to cover Kinley's carseat with a waterproof pad in case she throws up in the car. It will get easier!!
Jen Miller
Congratulations you guys! I remember the night I put Kinley on ECMO...and now look at her! You guys are great parents and she is so lucky to have you! Have fun. We will miss seeing you guys on pod D!
~Noel
She is so awesomely (is that a word) amazing! Don't worry about those little feeding issues. She is happy to home with you and a little bump in the road won't phase her a bit.
I still think Kinley is such a superstar. She has overcome so, so much and done it with grace, just like her parents.
I could not be more thrilled for you. I look forward to more pictures as well :).
Oh, and you have an amazingly wonderful Aunt Karen too!
We're praying that things get a little easier- you guys are doing phenomenal with all that you have on your plate- you must be so exhausted! You have so much to balance. Just keep taking it a day at a time, each day is one day closer to Kinley improving more and more and things getting a little easier hopefully. I can't imagine tackling an NG tube 3 times in one day- I'm sure it stinks having to do it even once. Hang in there. We love you guys! Joe, Melissa, and Jackson :)
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