8/11/08 - Change in Diet


Someone had a long night last night.


Think she is ticklish?




After a long and stressful evening and day today, it ended on a really good note. We spoke with the doctor today and we have decided to start fortifying Aimee's breast milk instead of giving Kayleigh straight up formula. With all the tests, they don't find any other reason why she was backed up so much. When they told us last week they were taking her off the BM completely, Aimee had a funny feeling in her stomach that they shouldn't be doing this and they should be fortifying it. I guess we should listen to our funny feelings for now on and ask a bunch of questions. If anyone has any question in their mind that something should or shouldn't be done, please let me know so we can at least ask the doctor why they are doing things a certain way. That way we can all work together to make sure Kayleigh is being treated correctly or at least learn their reasoning behind what they are doing.

The scary part of this whole thing is they have to tell you all the possibilities, even if it means scaring the crap out of you. Even though NEC is not completely ruled out, it is very slim that is the reason for the back up. The reason I say that is because Kayleigh pooped a good bit this morning and her belly has gone down quite a bit throughout the day. Whatever the problem was, it's taking care of itself quickly! All the prayers today sure have helped. THANK YOU!

More great news is that since Kayleigh has been breathing really well, they lowered her oxygen flow to 4 liters. She was at 5, but since she has been on room air (21%) and satting high, there is no where to go but to lower her flow. That could have also been why her stomach was bloated and full of air. When air is forced in her nose, it will take the path of least resistance. Sometimes that means if the airways are not open, it will go down to the stomach. If she is not passing her stools, air will get trapped in there too causing it to back up. When I explain that, I feel like my stomach starts to hurt because we all know what trapped gas feels like.

Even more great news is that when we start Kayleigh's feeds back tomorrow and if she tolerates them over the next few days, we are going to try to start bottle feeding her. Aimee and I were wondering when that part of the process would be, but we didn't expect them to say real soon. We are so stoked that we get to do this. Aimee got to hold Kayleigh for 3 HOURS today. That is the longest we have had her out and she didn't desat one time, even when it was time to put her back. The funny part was that she slept so sound for all three hours, but when it was time for us to go home, she woke up and was so alert. We hated to leave her when she was awake, but I was so hungry I was about to eat her left over formula. ha-ha!

EVEN MORE great news is that I just got off the phone with our nurse and she said that she is doing even better now. Her belly went from 23 to 21 centimeters, so it is definitely going down and her weight is at 876 grams. That is 1 pound and almost 15 ounces!! Woo hoo! She weighed in at 840 grams yesterday so she has grown a lot more than usual in the past two days. She is almost at the 2 pound mark. Now we know that the formula does help with putting on weight, but we still need to get something that digests easier for Kayleigh.

I am so pleased to see that things are getting back to normal with her belly and it isn't as severe as they thought it was last night. WHEW!!! It is so true when they say a few steps forward and one step back. It is really a game of trial and error because every baby is different. When the nurse said that most babies don't tolerate fortified breast milk, Aimee said something in response that really goes much deeper than the surface if you really sit and think about it. She said, "Kayleigh is not like most babies, she has already proven that." That is so true with everything we have hurdled. From the negative doctors in the very beginning to Kayleigh shocking all the doctors right now, she is definitely NOT like all the other babies. I would say she is our little princess, but from the looks of it, she is going to be a tough cookie that won't take crap from anyone. haha

Thank you for your prayers as we go through these trials in our life. I guess since Kayleigh can handle anything put in her direction, please pray that Aimee and I stay sane and we don't end up in the hospital before Kayleigh comes home from it.

With much LOVE!

The Freemans :)

16 comments:

Sam said...

I'm glad that the risk of NEC has almost been eliminated. I did notice with her pictures last time that her tummy looked a little distended. David has a history of NEC - and although it's scary - from what the nurses told me, there are many many warning signs to look fore before it gets too bad. Follow your gut, though - especially if you have a nurse that isn't familiar with Kayleigh. Some of the things that I remember we had to watch for was extension of David's tummy - and you can tell, you see her every day. If it looks different, ask about it. Also, they should be measuring her stomach every day to make sure it's not getting larger. Also, before NEC gets out of control, they're stomach will begin to change colors - almost look kind of bruised. Also, make sure that they are checking for residual formula/breast milk before giving her more.
One thing you might see is for them to put like a suction thing in her stomach - it looks just like the feeding tube that she currently has, except it will suck all of it out of her stomach. That's what they did for David, anyways.
And WOOHOOOOOO about bottle feeding her! You may not realize how HUGE this is - but if you guys can get her to take a bottle NOW instead of much later, like we had to with David - then the chances of her having to have a mickey button have to be much slimmer!! woohoo!!!!! Once you begin bottle feeding her, you may notice that her weight gain begins to slow. The way they explained it to me was that they burn so many calories (energy) by sucking on the bottle, that they can't use as much to put on the fat. But she'll get there!!!
Anyways, thanks for the update - I hope that this is a quick step back before many more good days. And, I hope that you guys stay sane. Haha!

Christy said...

Hi! SO glad to hear Kayleigh is doing well! I just have one question.. Our NICU, wouldn't let either one of my daughters bottle (nipple) feed until they were close to 3 pounds.. Mine were both severely IUGR as well, and grew VERY slowly too, so, it took a while to get started on the bottle.. Yes, gestational age is huge, but you want her to grow! If she is working on the bottle, she burns the necessary calories to grow! Just a thought, if they are pushing it, maybe ask to allow her to grow a bit first? Just a thought! Hope everything continues to go well!

Rachel's Mom said...

Adam and Aimee,
I'm SOOOO happy to hear that Kayleigh is improving and that it looks like the possibility of NEC is being eliminated. You're doing a great job educating yourselves and being an advocate for Kayleigh's care. I KNOW it's hard to question the doctors and nurses. Rachel was in the NICU for 6 weeks and it was often diffcult to have the courage to question or insist on a certain treatment. (I'm still intimidated by doctors and elementary school principals!)You're on the right track for following your instincts. I posted a few days ago about the use of formula and NEC and will email you privately if there's any way that I can help with additional information.
Warmly,
Rachel's Mom

Sam said...

Christy makes a good point - but I still think that the practice is vital. One suggestion - maybe see if she can drink like five cc's of formula every three hours and tube feed the rest? Or at least continue with the pacifier. Just my opinion of course!!

Erica P. said...

just wanted to tell you that ive been reading and praying everyday for Kayleigh. i am from the BBC sept 08 board and am so happy for you and your family for beating the odds! we are rooting for you all here in Wa....God bless you Freemans!
luv n huggs, The Paci's

zzzzzbaby from bbc said...

Yay! I'm so glad that she's doing better. Whew! And three hours of holding Kayleigh?!? That's wonderful.

Yay for better news than yesterday.

Kelly said...

I'm so glad that Kayleigh is doing better!!! She's so beautiful. God truly has big big plans for her. I'll continue to keep your family and doctors in my prayers. God Bless You all and remember when life knocks you down to your knees just remember that you are in the perfect position to pray.

Kelly Hardin

Andrea said...

My son was born 10 weeks early, he was in the NICU for six weeks and had some issues with digestion in the beginning. In fact, at one point in time he was being fed over a 2.5 hour time spread every 3 hours. So he was pretty much eating all day! This seemed to help him digest his milk and kept his belly from bloating too much. Also, I have NEVER heard that formula is easier to digest than breast milk (which is much better for your baby's immune system anyway) and our son was in two NICU's as he was born on vacation and flown home once he was stable. Keep following your gut and if something doesn't feel right don't hesitate to get a second opinion. You guys are doing awesome!

Christy said...

I agree with Sam! hehe.. Practice is huge, but be sure they don't push her too much! I agree with maybe a few cc's twice a day or so! Good luck!

annaandallysmom said...

I am so happy things are looking brighter. Just keep your heads up!!!

God Bless,

Monica

Carly Nicole Elliotte My Micro Preemie said...

I'm glad to hear that NEC isn't such a BIG possibility right now! And I definatley can't beleive that Kayleigh is almost 2 pounds.
YAY!!! for getting to try bottle feeding soon. Kayleigh will prove everyone wrong by time it's all over! LOL

Rachel

GiGi said...

Go Kayleigh!!!
Our NICU doctors told us that digesting breast milk is way easier on their digestion tract then formula that is one of the huge reasons they said ours did so well. They fortified it with Neosure and we were on it for several months after coming home. Also I think it is awesome that Kayleigh gets to take a bottle. As long as she is growing and she will she should take at least partial feedings from her bottle. There is a small window that when those sucking instincts kick in that she needs to learn so she will be successful and not end up on a tube because her brain won't let her swallow. She is going to have to learn to breath and suck and swallow and not choke all at the same time and getting that crodination down is important. It will take a while to learn that as it is so don't stress on the weight gain to mach as long as she gains a gram she is heading in the right direction.I know she will do well and will thrive on the fortified BM. We did great on it!

God Bless the Freeman family!

Erica said...

One thing I wanted to say is mom's (Aimee) gut feelings are almost always right! I had the same thing happen to me twice with my Ryan! One was for his bottle feeds and the other was when he was starting to get sick again. The main Dr. was the one who I questioned about it! She was a wonderful Dr. So at every rounds she would tell the other doc's "Mom is always here and she knows her baby well so please listen to her concerns!"

Please, Please don't feel bad in asking questions to the Dr's and nurses! Adam and Aimee you know that both of you are there with everything you have in the best interest of Sweet Kayleigh!

Kayleigh, Adam, Aimee, and family you all are always in my prayers!! God Bless You All!! The insanity thing comes with the whole NICU package! LOL! There was never a day that I wouldn't cry to go home with my baby! To be normal! BUT..... It will happen soon! The other hard part was when Ryan and I got to go home, I was so happy but when I told our friends that we met in the NICU bye was hard and sad! Ok I will stop my novel! HAHA! God Bless & Take Care!!

Erica
Mommy to 2 boys
1 who was a 31 weeker

DANIELLE said...

DON'T YOU WORRY ABOUT GOING CRAZY BECAUSE GOD NEVER GIVES US MORE THAN WE CAN HANDLE. KAYLEIGH IS TRULY A MIRACLE FROM GOD, AND WITH THE THOUSANDS OF PEOPLE PRAYING FOR HER EVERYDAY, SHE WILL SURELY BE WITH US FOR YEARS TO COME. I AM PRAYING FOR YOU AND KAYLEIGH EVERY DAY. SO HAVE PEACE BECAUSE GOD IS WITH YOU. WITH ALL OUR LOVE, THE BUCKS

Anonymous said...

I am so glad to hear the good news about Kayleigh, and Aimee getting to hold her for 3 hours YEAH!!! I know how exciting and emotional that can be. I love to hear the good news and she is so strong. She is a fighter and will prove all the skeptical Dr's wrong.

I'm keeping all of you in my prayers!!

gloryrevealed said...

Praise God! I'm glad you are going back to breastmilk. With my baby in the NICU, it was a fight to be able to breastfeed. Seems like some nurses really want to be able to measure and control everything. I believe the nurses had my baby's best interests in mind, but I knew in my heart that there was no food that would be better for Micah than my milk. He thrived on breastmilk and I believe that God knew what he was doing when he made our bodies as he did! I found this website to be helpful. http://www.llli.org/NB/NBpremature.html