11/29/08 - Writer's Block Cured

This was the first time in the past 5+ months that I've had problem coming up with something to write about, so I just sat here for about ten minutes just completely blank. I guess you can call it a really bad case of writer's block. The funny thing is, an email came across the bottom of the screen from someone who was asking what Kayleigh needed to accomplish before she could come home, so she could pray for those things. Ha - Thanks!

Well, Kayleigh first needs to come back down on her oxygen an off the nitric oxide. She is currently at 4 liters of flow and her oxygen is set at around 40%. It needs to be .1 liters of flow and typically they will leave the percentage of oxygen at 100% since the flow won't really supply that amount of oxygen to Kayleigh anyways.

Second, Kayleigh needs to get her feedings to perfection. She is not eating well at all from her bottles, but she IS tolerating all the feeds when gavaged (fed through her tube). She is currently at 25-30 ml's every three hours, but she only took 5ml's by bottle for me tonight and all of that was practically forced. We can't figure out if her throat hurts or she just needs to improve her suck, breath and swallow again. I remember there was a time she was finishing 50ml's in less than 15 minutes, so I know she can do it but we don't know why she isn't.

Lastly, her lung pressures need to come down to a safe number. The last echo, which was yesterday, showed that her pressures were elevated in to the 60's again. That is not what we want to see, but it isn't horrible either. At her worst, she was in the high 70's, low 80's. Normal children's pressures are in the teens. We don't expect Kayleigh to be in the normal zone, but we would like to see them in a zone that prohibits her to spiral out of control with the smallest illness/infection, like the UTI.

All in all, the doctors are concerned about her pressures but are happy to see they are still reactive. If they were fixed and at this level, we would have a serious problem. So the main thing to pray for is that her pressures improve before they become fixed. The problem with that is no one is sure what will help improve those pressures because this is not a common occurrence amongst preemies. Kayleigh is unique and she has proven that so far, but in the past several weeks since her heart surgery, her pulmonary hypertension track record is not improving yet.

So please pray for those three things! Yes we would like for her to come home soon, but if it takes a long time for all of these issues to be fixed, then we would rather that happen than for her to come home unhealthy.

Kayleigh had a pretty good day today. She did drop some weight, which doesn't seem right. She weighed in at 4lbs - 3oz, but we will see how tomorrow weight is to see if it was something to worry about. She was still cranky today, but not as much as the day before. I am hoping that what ever is causing her to be cranky is going away and she can get back to her normal self. She slept pretty good on my chest tonight, but would wake up every now and then as if something was nagging her and she felt uncomfortable. I had to pat her back constantly or she would wake up and start crying. She definitely looks more like herself though and she was a little more alert tonight while we were doing her cares. Her scar from her heart surgery is looking great!

Thank you all so much for your support and prayers through this. Hopefully his roller coaster will come to an end one day, but let's just pray for a healthy Kayleigh. That's all!

God Bless,

The Freemans :)


Jennifer said...

We will definitely be praying for these specific things. I hope she feels better soon. I wonder what is making Miss Kayleigh uncomfortable??

Deni said...

I wouldn't worry too much about the weight things, babies fluctuate, and with the amount of stress on her little body, it will do it. Parker was up and down all the time, mainly because it's hard work healing!

As far as the eating, I feel you there. It was truly the only reason Parker was in the NICU as long as he was. I can't tell you how frustrating it is (because you obviously know!). You just want to see them eat and succeed, but you don't want to push them either because that's never any good. Parker came home having eating issues, but like a week later, was doing good, just cried a lot because it hurt!

I will be praying for these things specifically! I know it's hard. You want them home so bad, but you would rather them come home healthy then come home and be sick still. One day at a time, friend! I wish I had a ton of words of wisdom and all that, but I don't. Kayleigh, will get there, but in her time. And that's the hard part, you want it to be right now and it's not.

Hang in there! It gets easier, I promise!

Anonymous said...

Still praying everyday for little miss Kayleigh!
With love from Southern NH

Nutty Mom said...

Thanks so much. and I agree that it would be better for her to come home later and very healthy, than sooner and not healthy. But hey, who says we can't pray for soon and healthy right?

Heather and Travis said...

You two are such awesome parents! You have so much strength and courage. We are also battling the NICU roller coaster and it takes everything out of you.

We will be specifically praying for the things you mentioned. My little one, Morgan Kate, has a very difficult time with feedings. In the beginning of the bottles she did great and now she doesn't want anything to do with them. I feel like we are forcing something on her that she just isn't ready for.

Please know you and your family are in our constant thought and prayers. I have your page linked to ours. Whenever someone asks about Morgan Kate they always ask about Kayleigh as well.

Lots of prayers!
Heather and Travis

Lorena de Bianchi said...
This comment has been removed by the author.
Lorena de Bianchi said...

Hi Adam,

We are still praying for Kayleigh!! We will making a special request to God for these three things you listed that need to be ok so that she can come home.

I was wondering, have you already ruled out reflux? Agustina was fuzzy all the time and wouldn't take her bottles until we finally did a test for reflux and turned out she had a level 2 reflux (there are 4 levels, and some 3 and 4 levels need surgery) She now has medication for it and has to be in an upright position all the time, and while it may be a bit unconfortable for her, it seems to be taking care of the problem. Now she goes through her bottles with no problem, though she still gets a bit tired. We also give her her pacifier in between bottles because the suction helps keep the fluids down and we also thickened her milk a bit so it won't come up that easily.

Anyway, just thought I'd let you know so you can talk to your doctors about it.

God bless and I will be praying that she will continue to gain weight and work through her troubles.


The Bianchis

Jennifer in NM said...

Aimee and Adam,

On a fast note, I am glad that Kayleigh is at least stable for the most part. It still makes me nervous about her pressures though. On a corny side note, my husband and I just broke the wishbone from our turkey and I got the bigger part! Of course I wished for nothing less than for Kayleigh to overcome all of this and just be ok all the time.

With much love and prayers,

Lindsay Dean said...

Praying as directed! Heart hugs from Michigan!
Love, The Dean's

mommy to Kaden, Brody and angel Ava said...

I found your blog through another blog (The Family News) not too long ago. You have an amazing little girl in your life, but I know I don't need to tell you that. Thank you for sharing the video, it brought tears to my eyes. Your family's story is incredible. What a little fighter Kayleigh is.

We too spent a good amount of time in the NICU with our son Kaden. He was there for 11 months. Our daughter Ava was in the NICU and PICU for a total of a little over 3 months before she passed away. I know the struggles of wanting to have your family home together, but also wanting to make sure that they come home as healthy as possible. I pray for your family and will continue to do so. Stay strong for each other.

Thinking of you all,

Unknown said...

I would 2nd the idea of reflux. Both of my boys had it. My preemie did the same, refused bottles and had lots of trouble till diagnosed and treated. My 2nd (who was full term & 8 lbs) also had reflux and would still eat through it, but then be very uncomfortable and throw up ALL the time. Again, once he was treated, it was like I had a new baby!! It's a question that wouldn't hurt...in the meantime, praying for a Happy and Healthy Kayleigh to come home (but for her Mommy and Daddy's sake, to make that sooner rather than later!)

Keri, Rural NH