9/24/08 - The Doctor's thoughts

Kayleigh is hanging in there today. Her vent settings are lower than last night and she is still on the nitric oxide. Her oxygen was set around 35% and the nitric oxide is at 10. They are going to try to wean her off of both if things are looking up. She did gain some weight back (50 grams)and is now 1270 grams. The blood transfusion went really well and they have given her a couple different antibiotics to treat the possible infection.

We spoke in great length with the doctor today at Kayleigh's bedside. We are so blessed to have such great doctors there who care and will spend the time needed to make sure we really understand things well. Our doctor is hoping and feels like the issue at hand is due to an infection. But on the other hand, Kayleigh's quick turnaround of events yesterday leads him to believe it may be more. They are going to keep a close eye on her situation to make sure it is not the latter of the two. The situation he spoke of is due to chronic lung disease/pulmonary hypertension. Now this is not the same pulmonary hypertension as adults have and we were told strictly not to do our own research as the hypertension in preemies is a much different story.

I will try to explain this as best as I can. There is built up pressure in the heart and in the lungs to push blood along it's directed path. Since Kayleigh has a hole in her heart(VSD), the oxygenated and non-oxygenated blood will follow the path of least resistance through the holes in the ventricles. So if her lungs have more pressure because of the hypertension, the oxygenated blood on one side of the ventricle will pull non-oxygenated blood to its side (path of least resistance). So, If the non oxygenated blood is pulled to the other side of the heart and mixes with the oygenated blood and then sent out to the body, it causes Kayleigh's organs to get very little oxygen. The nitric oxide, relieves some of that pressure by relaxing the blood vessels in the lungs and helps deliver more oxygenated blood back to the heart and out to the body. That is why when they put her on the nitric oxide, she responded well to it very well and her oxygen saturation went from 60% - 90% yesterday.

Things that can cause this to happen could very well be (AND HOPEFULLY) an infection which can be treated and forgotten quickly or some kind of reaction to the anesthesia or pain/pain medication. If the hypertension/chronic lung disease gets worse, the doctor said we will tackle that issue when it happens. I am and most of you can take that for what it is worth, but the doctor was honest with us and said that if there were ever a situation that is irreversible, he will be upfront and honest about it. (Although it scares me that he would even bring that statement up as it could either mean he is preparing us for what's to come or that we shouldn't freak ourselves out because they don't have any answers yet.) He said there are other things that may be done, but we don't know what those are yet until we find out whether or not this is even an issue and how severe it is. We were told to hang tight and let's just get through this process of weaning her off the vent/nitric oxide and then we'll know what route we are going.

Basically, I am "guessing" and being "hypothetical" here so don't judge my words, but if this is more than the cause of an infection, things are not looking good. I say that because, besides nitric oxide or Viagra (also used for relaxing the blood vessels in the lungs)there is nothing that can help the situation and the outcome will be negative. We can not keep her on the nitric or Viagra for ever as they will do more damage than help, and the reason we are not to do any research is because there isn't many studies done for preemies with this issue as it proves fatal for most cases. If everything on the internet is for adult pulmonary hypertension, it is because there is no good news for preemies. I guess blood vessels in the lungs are similar to how they act with ROP. They run in to trouble with growth because something grows wrong when a baby is born premature. Just my guess.

Anyways, correct me if I am wrong with my guessing in the past paragraph if you know any further details about this issue or have stories of other preemies. It should give me ideas on some important questions that I can ask the doctors tomorrow. It is now a sit and wait game again and just pray and hope for the best. I know God has His reasons for everything and we are going to trust in Him through every situation.

Please continue to pray for Kayleigh and hope that this is not an irreversible situation.

God Bless,

The Freemans :)

18 comments:

Amber said...

I believe Sam (David's mommy) went through something similar with him. She could probably help you out. I will say extra prayers for Kayleigh tonight, and hope the antibiotics do the trick! Get well soon baby girl!

Babyksmom05@yahoo.com

campbell9023 said...

I will continue to pray for Kayleigh. Fast question: What is her blood pressure? Just wondering.

I hate the fact that it is a waiting game, I am a person that needs definitive answers and it really bothers me when I can't have them, and I can only imagine what you guys must be feeling. I wish the docs knew more.

Aimee and Adam, I pray for you guys all the time to have the strength to pull through whatever is sent your way.

Did they do an echo?

Check in tomorrow.

Jenn
jlcampbell2008@yahoo.com

Carly Nicole Elliotte My Micro Preemie said...

I just want to hug you guys! I want to cry. I have a lot of emotions attached to you guys and Kayleigh just because of the similar situations. I pray that things get better and that God gives you and Ammie and Kayleigh the strength to get through yet another rough patch. You guys are constantly in my thoughts and prayers.

In Christ,
Rachel

Anonymous said...

http://www.inspire.com/groups/preemie/discussion/pulmonary-hypertension-3/

Kayleigh dear your in my thoughts & prayers honey!!

Adam and Aimee Freeman said...

Jenn,

The ECHO came back unchanged from last time, so that is good. I am not sure what her BP is, but I will check.

Thanks :)

gloryrevealed said...

I'll be praying for your family and that your doctors will have wisdom to know what to do.

I don't know much about this, but we've learned a little about the whole PDA thing as we're in the opposite situation. I'm on medication to stop preterm labor that could cause the ductus to close before the baby is born, also not good. So I know how important that little part is! Anyway, you are in my thoughts and prayers.

Nikki Conway said...

Kayleigh was doing so well before her surgery as far as her lungs go right? So if it's more than an infection wouldn't she have been having this trouble before her surgery? I'm just about to stress myself sick for Kayleigh and you guys. I didn't read you update last night cause my kids and I went to bed early, so all night I laid awake worrying about her. I'm praying for your little angel. With Love, Nikki Conway.
ndm8881@yahoo.com

campbell9023 said...

Aimee and Adam,

I now have more faith because the echo came back unchanged. I am thinking (and again I am no nurse) that if her bp comes back okay, then possibly and hopefully the antibiotics should work. I will pray for that. Thank you for getting back to me so late. I hope you guys are sleeping (as much as you can).

Jenn

Adam and Aimee Freeman said...

Nikki,

This is the interesting part. We have not heard them talk about her having any kind of chronic lung disease until the other day. I don't know if we missed it or not, but they say that word is used loosely. She basically, she had the issue before the surgery, but it wasn't causing any problems. Now that something has triggered it, it has decided to surface and cause a serious threat.

Adam

Anthony's Mommy said...

Didn't they do a blood test the other day and saw her white blood cell count was high? Wouldn't that suggest it was an infection?

Also in regards to BPD/chronic lung disease they pretty much say if your child is on oxygen after like 60 ( can't remember the exact number) then your child has it. But that doesn't really mean anything. Anthony came home on oxygen and was on it for 8 months. His lung dr says in a 1-10 score Anthony's lung issues were probably a 3. So that made me feel much better. And he was on the nasal therm (CPAP in cannula form) pretty much until a couple days before he came home.

Sorry for the ramble. I just know your little girl is strong and will make it through all this.

Kim

Pennie said...

You may be tired of hearing this, but GOD is the one who is holding your daughter in His arms. That is an awesome thought to know that only HE is in full control of Kayleigh's health.

Don't grow weary of hearing that God is handling things with Kayleigh, His way. We just have to love Him enough that our faith in God's plan with this baby doesn't grow weary. But remind yourselves that you wouldn't want it any other way, but His awesome way. You may not understand "why," but you don't have to know all the answers, but just know that if you trust Him completely He will give you grace to get you through this, and you will find joy in whatever God does.

We are praying and believing for your family!

Love,
Pennie

Anonymous said...

I am praying for Kayleigh and you and Aimee. She's a little fighter, be strong for her.

Stay strong Kayleigh! (((())))and prayers :)

Patricia

Adam and Aimee Freeman said...

Kim,

Yes, Kayleigh's white blood count was higher than normal, but they can only hope that it was caused from an infection. I just hope it is not a combination of both and when the infection is gone, the hypertension is still there causing problems.

Adam

GiGi said...

Some times the anesthesia can cause the system to relax and then fluids build up causing Nemonia, that would take a couple days after surgery to show up as well.
Please God hold Kayleigh and her family close in your arms and let them grow strong in your loving arms so they can continue to do your will. AMEN

Anonymous said...

My son was born at 28 weeks, and I am also a nurse. In my experience they say that all preemies have some form of BPD/chronic lung disease simply because their lungs were not fully developed and aren't as strong as a full term babies. Now it is exacerbated by things like intubation, oxygen and anasthesia. Keep this in mind and hope that she is just reacting to the surger and may be the slight infection is making it even harder to recover. She has made it beyond how many odds so far?.. she will surprise you for many more years to come.

ERICA said...

God Bless You Kayleigh!! You are in my thoughts and prayers today and always!! Stay strong sweetie!! You can fight this!!!

Erica
Mommy to 2 boys
1 who was a 31 weeker

Sam said...

David's been through the whole pumlmonary hypertension stuff... and it's not fun, I'll tell you that. He was on Viagara for a while too. Our case didn't really present itself the way yours is, though. However, I blogged extensively about it, and if you're interested in reading it, here's the link to that part of my blog: http://thestoryofdavid.blogspot.com/2006_04_01_archive.html

At any rate, I'll be thinking of you guys... and I hope to see an update very soon. Please email me if you have any questions or anything sxymma@gmail.com

Rayna's Mom said...

Hello Adam and Aimee
I just wanted you to know I've been following your posts starting Tuesday of this week and I've been hooked ever since!

I couldn't believe my eyes after viewing your photos how happy you all look going through all this! And your daughter is lovely! Isn't it great to appreciate the little things like pooping, sucking on a paci, etc. when you have a preemie?

My daughter was born at 31 weeks and stayed in the NICU for 30 days and boy, every day my husband and I visited was nerve-wracking. I can't relate to all the medical terms detailed on your blog (good job by the way Adam for knowing every detail about your daughter's medical history and progress), but I can't imagine how each day just bring surprises to you both.

I just want to say that you are a testimony to a lot of people out there that may be going through some tough times and you are showing them that you cannot falter during these tough times but you can only continue to depend on Him.

Just remember He is preparing you for something so big and infinite that all our minds combined will not be able to comprehend. The outcome will be so great (no matter what it is, and it may not be the outcome we think it should be) but it is His plan..

I am only a stranger but you guys esp. Kayleigh are so close to my heart and I will be praying for you everyday.

Take care
Rayna's mom