1/27/09 - Still Waiting

We are still waiting to hear back the final verdict as to whether Kayleigh is going to need a trach, but all the votes are point in to the direction of "yes" and we are all prepared if that is the case. After learning more about the trach and reading up on all the great information you all have sent us, it comforts me in knowing that this is the very best thing for her. She will not only be able to breath better, but she will be able to focus on other aspects that go along with early childhood development.

We are more than happy to say that the trach will speed up her process of coming home because she would not be able to come home with the ET-tube down her throat. Yes, she still needs to tackle the reflux issue, but they may do either the g-tube/nissen or the jg-tube at the same time as the trach. After that, the doctors need to decide whether or not they want to send her home on the Flolan for her pulmonary hypertension or try and wean her off of it. There is not much else to do from there, but we said that before so pray that nothing pops out of nowhere. We will have in-home care provided for us, which will be the biggest adjustment, but we try to look at the positives and do what is best for Kayleigh. "Hey, at least I get off of night duty for a little bit longer."

Kayleigh seems to amaze us everyday. When we go in to spend time with her at her bedside, we always find ourselves lost in thought. Looking at this blessing from God that has beaten so many odds is such a great feeling. It takes me back to when I would lay next to Aimee and put our little fetal dopplar on her belly so we can listen to Kayleigh's heartbeat. Every night for 10 weeks straight, we prayed to hear the pitter-patter just one more day. We would just lay there and smile at each other with such strength and hope that Kayleigh will make it through this. Look at her now! She makes my heart melt every single time I look at her. I am the proudest Daddy in the whole wide world.

Thank you ALL who have supported us through this.

PS. Don't forget to send in your photos for the baby shower contest. Only 11 days left!!! Submit them at Leeloublogs@aol.com. If you don't know what I am talking about, check out the previous post or go to LeeLou's Baby Shower to get involved.

God Bless,


Emily said...

I'm so glad that the doctors seem to making long term decisions about her care that will get her home to you guys. The idea of a trach was so scary to my husband and I but luckily the reality was far better than I could have imagined. Our 25wkr spent 225 days in the NICU and came home with a trach/ventilator and a g-tube/nissen.

Alicia said...

I will continue to pray that Kayleigh will not need the trach, however I am pleased that you have come to accept that option if she needs it. It was hard for my husband and I to accept the trach at first but it turned out to be our daughter's life saver. Now it just a part of her (we of course still want her to get rid of it as soon as possible! :).

Marissa also had her g-tube placed at the same time, so I pray that if Kayleigh needs a trach the docs can do the same for her.

It sounds as though you've had some great advice from your readers. I'm sure they've suggested tracheostomy.com. The message boards are great. You can also go to Marissa's blog:

God bless,


Pam said...

I am so glad that you are feeling a little more at peace with the decision of a trach. We are still watching and waiting with our son.

He has had severe sleep apnea, and we did surgery on his airway last year. It helped for a while but his pulmonary pressures have risen again, and we think he is still having apnea issues.

Our next thing is to try to get him to tolerate CPAP again. But he's three and he has Down syndrome, so yeah, I don't see THAT working.

If his pressures continue to rise and the o2 and meds done help then he will be trached.

So my heart goes out to you guys as you make this difficult decision.

I have always found that with Rhett, when you feel at peace with a descision, it's usually the right thing to do.

I hope with all my heart that Kayleigh can come home. You guys have been there long enough.

You are always in our prayers.

Pam and Rhett

Jennifer said...

Continued prayers go out to your precious baby Kayleigh. She is growing up with strong parents and lots of friends that have been rooting for her.

Anonymous said...

I love hearing that she is getting closer to going home! I can't wait to read the post soon that she is doing well enough!
With love from Southern NH

Anonymous said...

We will all continue to pray that Kayleigh will receive the necessary medical treatment needed and soon, this little blessing will be home with her parents. We pray and trust in God that He will continue to strengthen her and completely restore her body according to His plan.
Keeping the faith in New Braunfels, Tx

bri said...

I am so happy to hear that she is doing so well! I can only imagine the overwhelming joy that floods your heart when you see your daughter. You are looking into the face of God! It is amazing at how much He has held you all through this and shown His face time and time again in the midst of the storm!

Blessings from (near) Waco TX

The Sadler's said...

I've been following Kayleigh's story for quite awhile now and have been keeping her in my thoughts. I'm from BabyCenter and am active in a birth club there. One of the girls that was due with me this past December had her baby 3 months early at 26 weeks. I think it would be great if you could read her blog. Her little one does have a trach and a g tube and is continually going through more.
Here's a link to her blog. http://mackenziealexander.blogspot.com/
It might help you guys go through the struggles and know that there are other little miracles out there. Along with dealing with trachs and g tubes should it come to that with Kayleigh.
Always praying for you guys.

The Sadler's

Margaret Christine said...

((((((HEALING HUGS!!!!!!))))))))

hmmmm....its SOO hard to choose!! They are all amazing!! absolute miracles.

Anonymous said...

Hey guys! I haven't posted in a while but I have been reading every single day, and Kayleigh's story continues to amaze me. I wanted to make sure and post today because when you say that it will be an adjustment having the in home care, I completely understand. We had 60 hours of home health nursing when we first brought David home. In fact, we had 60 hours up until about the time that he turned two. Then they began to wean us, and we haven't had a nurse since last August. Let me just tell you - learning how to do things withOUT the nurses was SOOO much harder than adjusting to them being there. They're great! You'll never have to worry about Kayleigh being in a daycare of any sort, which will keep illnesses at bay - if you need to make a trip to Walmart you don't have to worry about loading up her pulse ox and oxygen tank, feeding pump, or whatever else they have her on - not to mention her carseat and diaper bag, and everything else that comes along with a newborn.
Anyways, you'll adjust to having someone in your home pretty soon. I just hope you guys get there soon!!!

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

You all continue to be in my thoughts and prayers.


Unknown said...

A warm hearty hello from Sunny South Africa! What a blessing from God that he directed me to your blog page!!! Wow - I read your WHOLE blog in one night and now im hooked! I found your website off Daniel Terry's website which i also happened to come accross from my friend here in South Africa who was following her blog! My baby was only 1 month prem and only in NICU for 1 week so I cant even begin to imagine the rollercoaster you all have been on - BUT with GOD in the driving seat - it must of being one beautiful ride! I have added Kayleigh to my blog page so that heaven's gates can be flooded with prayers...... I am honored to join you on this ride and add my prayers everynight for your angelic, beautiful, amazing, inspirational little girl! God bless, Megan du Plessis

The Woollard Family said...

Kayleigh amazes me everyday with how strong she is, what a miracle!!

We are praying for her, you, and the rest of your family!

Heather, Joseph, & Bailey Alyse Woollard

Wetumpka, Alabama

The Pyrat Family said...

I am tickled pink reading that Kayleigh may be coming home soon. I think any preemie mom will tell you that bringing your baby home will probably be the greatest day of your life. IT was for me. my husband and I were giddy as school girls. I have a blog post about it on our page because we just celebrated the 5 year anniversarie of Aedan's homecoming.

The Red One said...

Our continued prayers for lil K. We will keep the faith and pray for a smooth transition for which ever is decided.

Anonymous said...

I am praying hard for Kayleigh every day. I have a 3 yr old little girl who sees me wearing the braclet and asked me why i was wearing that braclet. I told her that we both need to pray very hard so she can go home with her mommy and daddy soon. It touches me to see her interesed in little Kayleigh and asked me to get her a braclet as well. I will be ordering one again soon. Always remember FEEDING YOUR FAITH WILL STARVE YOUR DOUBTS. Our God is an awesome God and he hasn't brought Kayleigh this far for nothing.

Anonymous said...

What a miracle your daughter is. I'm so glad she's here. I've put your widget on my blog and will pray for her and you. :)
God bless you ...

Maria Fernanda said...

I write only that you know that miracles exist Maria Fernanda (Mafesita) is a prove of that because she is now at home with us we are so happy .I want that you know that never I going forget pray for Kayleigh is a beautiful baby that want live and and she is able.God is with her at all times and he is going to make a miracle in Kayleigh how god made a miracle in us.

mrsrubly said...

yeah Kayleigh..you are on the right track! i really hope the trach will provide you with what you need in order to come home soon! i know your family really misses you. you are such a miracle sweet girl. i will continue to pray esp for the docs and med staff handling your delicate little body..bonny in TX

mrsrubly said...

yeah Kayleigh..you are on the right track! i really hope the trach will provide you with what you need in order to come home soon! i know your family really misses you. you are such a miracle sweet girl. i will continue to pray esp for the docs and med staff handling your delicate little body..bonny in TX

The Gile Family said...

Hi Freeman Family!

I've been reading your story for quite some time now. My daugther was born at 24 weeks and 6 days due to her twin brother (who passed away) having Chronic Placental Abrubtion. My daughter received a Nissen/G-Tube surgery in April 2008 and it was such a blessing. She had HORRIBLE reflux. The results were pretty much immediate. Addison has been home now for about 8 months and has been taking some food by mouth. Just thought I'd share our positive experience with the surgery! Good luck! I'll continue to keep Kayleigh in my thoughts!


Anonymous said...

Man, I don't know what you guys have done to the site since the makeover but it is S.L.O.W. to load! What happened? :(