Saturday, May 31, 2008

Scince I made my last post, a few people have asked me exaclty how much sleep we're getting now, 7, 8 hours? I WISH!! I guess I should've started with saying that we were getting about 2 hours and now we're getting maybe 4 or 5. Except the last two nights since I posted this she's decided to go back to fussing most of the night and so it's been more like 2 or 3 total. I wish these were at least 2 or 3 solid hours, but that's 2 or 3 total when all the 'naps' are put together. I still have no clue how we're doing it, I used to require about 9 hrs at night. We are being incredibly blessed is all I can come up with because somehow we are functioning through each day. Somedays more than others. The last two days I think I've felt more tired than I ever have. Bela hasn't been tolerating her night time feeds very well anymore, and somewhere around 11 or 12 is when it usually all starts. She fusses on and off allllll night long until I finally decide to turn her feeds off, or she decides that she's done trying to sleep when she feels so yucky and full, usually around 5. It really has been sooo frusterating latley, because we're giving her continuous food into her NG tube, but it just seems to be too dense or too much because she throws up every night around 3 times and we basically just wait until she does for her to feel releif. She'll sleep for about 20 minutes after she throws up and then it all starts over again. It seems so dumb to just keep pumping it in her then wait for her to throw up because we know it's too much! But what is more frusterating is that we finally figured out she needs that much to grow! She needs more than she can really tolerate. She was actually down an ounce again yesterday (bc of two terrible nights), and so we're now re-evaluating (yet again) to try to figure out how to get all of it in her without making her so upset. Just when I though we had finally got it figured out! SHe is sleeping much better during the day because her nights are so bad...a vicous cycle. Too bad Benson sleeps amazing at night, and not so good during the day. Oh well... So we'll keep trying to get the weight on her. I don't like that it's already June...surgery is coming up way to fast!! We're trying to work with her on the bottle because I want this dumb tube out of her nose for sure after her next surgery.. I would love it out sooner, but that's probably wishful thinking. She is taking the bottle great though, so if I'm able to get all that she needs in her through the bottle, we can get it out. HEr calorie needs will decrease after her next surgery, so it will be a definate possiblity then, and I'm going to do everything I can to get it out of her. I can't imagine having something shoved up my nose and down my throat all the time. Yesterday she threw up some blood (about gave me a heart attack), but luckily the nurse was here and called her dr. who said it was most likely due to her tummy being irritated from long term NG use. So sad! But I was soo glad it wasn't something more serious. It scared the heck out of me.
Other than all her feeding issues, she is so wonderful. I wish that I could just enjoy my baby more without ALWAYS having something to worry about. THat is the hardest part about all this..the contant worry. I sometimes have to remind myself that she is still a baby, not just a baby with a heart defect, and to just slow down and take time to just talk and play with her and enjoy her more. I used to be a failry easy going person, but not so much anymore. Can you blame me though? :) Hopefully we'll all be in a better place in a couple years and we can look back on this time and just be grateful we got through it.
On an extremely happy note...my mom is coming tomorrow to stay all week!!! Hopefully that'll mean some more sleep! I wouldn't be able to do this without my two incredible mothers and their help...

7 comments:

Simmons Family: said...

You can't stress too much on the feeding issue. Owen has always had feeding issue and we had the same night time issue... just pump them full of food, then they scream and you PRAY that they'll puke it up to find some relief...it's aweful. I wouldn't hesitate to turn off her feeds at night here and there and give her a break.... or lower her volume at night and give her more in the day when she can tolerate it a little better. YOU are her mom and YOU know best!!! Owen just kinda grew out of the puking but even now he still can't tolerate bolus feeds. It's frustrating, but like you said, we need to sit back...relax...and enjoy their baby stages!!! It will get better :) You are doing a fabulous job!!

camillian said...

Oh my gosh, that is just sooo hard to go through. Sleepless nights are so hard and they really change the way you're ability to deal with stress and being able to think straight. We will keep praying for you guys. I know everyone wants to help and we do too as much as we can but there are some things that just can't change no matter how much help you have and that's so hard I'm sure.
If you're feeling up to it one day you can come and check out pictures, otherwise I have worked on quite a few and I wil bring you by a disc of pictures.
You're such an amazing person, I really admire you and your experience is so humbling to me.

Lily's Mama! said...

Oh Avery, How I feel you pain...about the feeding issues that is...I think you would be cursing me if I mentioned the sleeping over here...LOL. That I feel for you. But Lily was having a horrible go with her feeds, that is why we got stuck at St.Joes for so long after her second surgery which was so frusterating for me. Before her emergency OHS she was breastfeeding and bottle feeding, we were actually scheduled to puller her NG...well that didnt happen and then we had to start back at square one and it was even worse...she stopped breastfeed all together...gaged and threw up everywhere...and she refused to take a bottle, then all the NG feedings would come back up also...we changed formulas 3 times, changed calories so many different times..I cant even keep count. Once we came home she started doing better. We are up to 80ml over 45 mins...which seeing we came home on 35ml a hour that is a HUGE accomplishment...i guess the bottom line of this story...is..it takes time...we still have her feeds turned WAY down at night otherwise her bassnett is a HUGE mess. I will pray the good Lord will help not only heal her heart but help her tummy....We all know our stress level is high enough without adding this to it.

Oh yes also,I dont know if you remember Angela from the hospital, her sons name is Siosi, she wants me to give you her contact information,if you email me I can shot that over to you.

Sending our Heart Hugs and Prayers like always. God continue to be with you.

~Jenna

Branton Family said...

Avery, my thoughts and prayers are with you. Your strength truly continues to amaze me. Thank you for taking time to keep updated on Zach. I honestly don't know how you even have time to do it. . .although you are awake a lot! :) He will have surgery either the last week of June or first week of July. Take care. Amy

Sally said...

Oh Ave...I am so sorry that it so up and down. Should I come get Bens this week sometime? What day? Then your mom can watch Bela and you can SLEEP! Let me know what I can do.

Auburn said...

Avery - you and your family are seriously amazing. I don't know how you do it. I would worry constantly too. I worry about my healthy kids, so I can't imagine how much I would worry about fragile little Bela. Although, I'm beginning to think that little fighter isn't as fragile as we think. She's tougher than most of us, and certainly teaching us a thing or two about trials in life! She's so adorable, and I just hope you can get the feeding figured out!

Erin said...

Avery truly I do not know how you do it, other than you are amazing! I do not think there are many that can even think about functioning for such a long period of time with that little of sleep, I know if I go just a few days I am a mess and my kids definitely suffer. But you have never missed a beat...the Lord is truly watching over you. He trusts you with that sweet little Bela and knows you will do everthing right for her, and you certainly have. Between the two of you (and of course continued blessings from the Lord) I don't think there is anything you cannot overcome! Once again thanks for your example!!!