7/19/08 - Back on CPAP - Woo Hoo!!!

Doesn't she look like a scuba diver?

Well, after a good night last night, they decided to put her back on the bubble CPAP this morning. I spoke to the Doctor in depth about how they decided when it was time to switch from the vent to the CPAP to the Nasal Cannula, especially when our main goal is for her to rest and focus on growing. He said that Kayleigh will not burn enough calories to make a difference if she has the apnea episodes, even when it appears she is not getting sleep and wearing herself out. The most important thing for her to grow is the amount of feeds she will be getting as long as she can tolerate it. So the reason she wasn't growing was not because she wasn't getting enough sleep, it was because she wasn't getting enough food.

The good news about her feeds is that yesterday they increased her feeds from 2 to 3ml and today, they are increasing it to 4ml. So she will get that much every 3 hours. That will help her grow. They are just going to keep an eye on Kayleigh and make sure she can tolerate that amount of increase or it could cause back up and cause infections. They don't want to give too much too soon. So with speaking to the Doctor, it cleared up my worries about whether or not her breathing assistance is going to affect her growth.

Overall, her day is going great so far. She was doing well on her breathing and not having any issues with desats. Being that the bubble CPAP is almost too big for her, it kept falling out of position, so it caused Kayleigh to not get the oxygen she needed. Her sats would drop, but then her heart rate wouldn't, so we knew right then and there it was out of position. They had to wrap it around her head and even put a beenie on to strap it in place. The picture almost like she is uncomfortable, but she is doing just fine. They had to get a smaller beenie because the one you see in the photo was too big and it almost covered her eyes completely.

The funny part of the day was when I changed her diaper. She had peed in her diaper, but there were only small small smears of poop. As I changed the diaper and wiped her butt with the wet cloth, I must have triggered her bowels because she had an explosive blow out. She almost squirted me in the process. It was so funny, I was almost in need of a changing too. So we threw on a new diaper quickly so she can finish her business.
Aimee is also doing a great job. This morning, she had the most milk she produced so far. It covered the bottom of her little cup about a half of an inch deep. That is a major improvement. She was so blessed to have met someone on the message board who sent her some Domperidone at no charge to help out and it seems to be working. We are so greatful because to order it, it would have taken a couple weeks and we didn't have time to wait. Kayleigh needs this liquid gold as quick as possible if we need her to grow and now Aimee is producing enough to make that happen. It is amazing how God makes everything work so perfectly. We are so proud of Aimee!!!

We are happy that today was another good day. I know that my posts always seem cheery, but I am really good at hiding my emotions. To be honest with you all, this is the most stressful situation I have ever been in during my entire life. It is so hard to see your child, who you can barely touch because you are afraid to disrupt her, let alone hold her in your arms like a newborn baby should be held. I am very impatient as I want her home with me NOW!!! I am so afraid to go in the NICU to find out bad news that she is not doing well or she may not even make it. The rollercoaster is the hardest part. One day she could be absolutely fine and the next day she could be fighting for her life. It is so hard playing this waiting game and balancing act of medicine. The events that have happened over the past 14 weeks with ALL the ups and downs of her "not going to survive" to "Holy crap, she made it" has really played a toll on me. You just wonder and ask God everyday, "What is the purpose of this and how is going insane going to help me help others." It has gotten to a point where I have been getting angry over the littliest things. I am sure that there are a lot of NICU Dads out there that try to act strong for their family, but are breaking down inside. Please, either tell me to suck it up or what I can do to help make things easier on my end.

I wish you all a wonderful weekend and God Bless!

The Freemans


Sam said...

Believe me, I know what you mean - it's hard on me sometimes to read your blog because I so vividly remember being in your shoes, hoping that each and every day is not your last - literally sleeping with the phone in your hand, calling the NICU right before you fall asleep at night and as soon as you awake in the morning. I remember the sense of dread I had when I'd walk into the NICU, hoping and praying that noone was going to catch me in the hallway and say "we need to talk" - I can remember praying for the weight gain, the devastation when there was weight loss - the incredible joy when David hit the two pound mark, the three pound mark, etc. And, I can also remember wondering if I'd ever make it through - would I ever get to bring David home? ... we were in the hospital for ten days shy of six months (the first time!) and I felt like that each and every day that we were there. I couldn't believe he was coming home, wouldn't LET myself believe he was coming home - until he sat in our living room for the first time. What a glorious night - the first night with him home....
I guess what I'm trying to say is, I've been there - I remember feeling like you do now - but I also know how WORTH it, it is, when you pack your beautiful baby up in a carseat and carefully drive her to her home, for the very first time.
So, keep your chin up - try to take care of YOU and Aimee... don't forget to take a break every once in a while - Kayleigh's in great hands. And keep blogging and keep taking lots of pictures. Because even though right now it seems like time is standing still - there will come a time where you barely remember her being so tiny - and those pictures will become priceless.

Anonymous said...

I have had little Kayleigh on my mind all day today. I feel like part of the family or a friend. It is so heart warming to read your posts everyday. I'm soo happy to see her doing so well. She is such a lucky girl to parent parents like you Aimee. I would love to be able to help in some way...do something for you. Would you please email your mailing address when you get a chance to dasheka@windstream.net . I'm sure every little thing would help. I am continuing to pray for your family.

GiGi said...

We feel you! it is almost like always thinking am I this lucky to have this awsome little life trusted to me and get to see her way before most other parents get to see their babies, but at the same time the selfish part wants to see even more like without the tubes and stuff, but you know that this is best for her and because I am so blessed am I too blessed? when is the other shoe going to drop?
Well let me tell you. Welcome to parenthood you are offically a Dad just wait until she goes off to school and to friends then dates Yah. Those feeling never go away. We had 3 itty bitties in the NICU 2 years ago and have 3 teens and I must say very similar feelings. The good news is in between the NICU and the teens you have a few years of a lot of joy. God Bless She is so worth it. Who needs Hair? It will grey anyway.

Anonymous said...

Hi Amiee and Adam. I have been following your blog from the beginning but this is my first comment. I am really pulling for you guys. I am so there with you emotionally. I had a 29 weeker this past December 9th. Oh boy the holidays were hard. He was 3lbs exact and that was a surprise to everybody as the doctors all thought he would be smaller with all of the problems that I had during my pregnancy. We were on the same rollercoaster you are on now. It is SOOOOO hard and I just wanted to let you know that I understand what it feels like. One day we would go in and everything was great. The next day we would go in to be told he has a serious comlication. My son had a double pneumothorax and needed 2 chest tubes. Thank God they worked and he made a full recovery with no long term effects from that. I also remember towards the end of his stay, he was taking a long time to catch on to the whole nippling/eating thing. All of his head U/S were clear but there was this one doctor that wanted to order an MRI becasue he wanted to make sure that his feeding issues weren't from some underlying nuerological thing. He suspected PVL. I LOST IT. I'm surprised the nurses didn't call the psych ward on me. That had to be the worst thing we had to deal with. Anyways, it turned out that there was no PVL, his brain was perfectly fine. In the end it was discovered that he was really ameimic and needed 2 blood transfusions. Well, that perked him up and he started eatig like a champ that night. He was in the NICU for 73 agonizing days and came home on his due date which was bittersweet. i am happy to report that he is doing awsome now at 71/2 months, 5 months corrected. He just had his preemie follow up for at risk infants and the docs were all happy with his progress. He is doing what any other 6 month old baby is doing and I am just so proud of him. The whole experience has changed me forever. I will never be the same. I have learned so much about myself and I am a beter person in the end. My son has inspired me to do thing that I have held off in the past. Heck, I'm going for my Masters in teaching starting this fall. I figured if my son could survive and thrive the way he is, I could do the same and i'm doing it for my children. OK, I'm sorry this got to be so long, but hopefully you are enjoying reading my comments. I just wanted to fill you guys in on my story and to offer my prayers and support for your family. You are all in my hearts every day. i look forward to hearing how your beautifull daughter is doing. BTW - WTG on the progress.


annaandallysmom said...

With my little girl who has several health problems there have been many times when I felt so helpless. Here is this child who is totally dependent on you and there is nothing that you can do for her. That is a horrible and very humbling experience. You always have to put the happy face on and act like it is all under control, even when you are falling apart inside.
The main thing that I found is to put it in God's hands. I have had to just pray and say Lord I can't do this and handle this alone, so please take this and hold it for me. And you know he always has been there with open arms. God loves his children so much, even more than we can love our own. And as much as we don't want to see our children hurt, he doesn't want to see us hurt. I guess what I am saying is no matter how worthless it can seem sometimes just keep praying and seeking God's face and he will be there with open arms to help you and give you strength!!

God bless your family,

Anonymous said...

I can't imagine going through what you and Aimee are. I know it has got to take its toll on you emotionally. I keep Kayleigh in my thoughts daily, and Im so happy to see her improvements. You can just look at her and see the difference. She is growing! I look forward to seeing many many more pictures of her! Keep up the good work Kayleigh


Anonymous said...

Hi Freeman family:
Thank you for posting your story. I am also a Realtor in the Chicago area.
Found your story on Baby Center and have been following it.
Keep faith that she will be o.k. It is obvious that she is very strong and wants to stay a long time!
Lisa in Chicago

Anonymous said...

You don't know me I just read your Blog
She So Sweet She is Stronger then All of us And i know how Hard it is to fall Asleep every night I know how much you Cry My son Who is now 2 Was 1 pound 6 oz at birth the roller coaster is the worst I remember it all to well walking through the Doors of the NICU Every day Felt some times like part of me was braking apart But it was it will all be ok no matter what happens God Dose Miricals every day
And remember Even you May try to be strong and not fall apart for aimee My husband would do the same but its ok to Fall apart your her dad Its ok to feel the way you do you can only stand as Strong as you are alone But with God all things Ar possible Have Faith in God He Is holding your little one In his hands when you cant he is there with her never leaving her Side
Its ok to site at her bed and Cry its ok to Feel helpless Cause there is nothing you can do but be there for her And love her thats what she and you need Most right now its not Easy But She will get there She will grow.

Unknown said...

Glad Kayleigh is having more great days! That's awsome that she's back on bubble cpap. And I know what you mean. The stress of the NICU is very difficult. And trying to keep it together for everyone else sometimes wears on you as much as just being in the NICU does. I think it's a normal thing to do though. I always felt if I kept my words and attitude positive then everyone else would feel better and give me more positive thoughts to go on. Even though at times I was breaking on the inside but smiling and laughing on the outside...I really think the positiveness on the outside helped. But don't forget it's ok to breakdown and cry and scream. It's normal. It's a way we know to cope. If you are afraid of bring your family down with your emotions then talk to your social worker, nurse, or another friend you feel comfortable with. But at some point emiotions wether good or bad need to come out wether with your family or in private. Your doing a great job though. This will make you a brand new person and giive you a whole new out look on everything you encounter in life. God bless you all.

In Christ,

Anonymous said...

Good ol CPAP! Parker was on a vent, then cpap, then off, then on cpap again and then on a nasal cannula...and now nothing! It always frustrated me when his stats would drop...but the CPAP will help.

Your family seems so strong. It's good to read about the faith you have and the love you have for your daughter! She is so strong and I am praying for her daily.

And I understand about the blowout poo....Parker does the same thing!

My husband is a lot like you. Trying to stay strong for me and Parker, but breaking down in side. He doesn't want to allow his emotions to flow, but I tell him all the time, he can't keep it all in. Would you like his email so you can talk to him about it? I know he could use someone in his shoes! Let me know, you can leave me a message on my blog or email me....maybe it would help both you and him to have someone to talk to!

Hang in there! God is good and know that when you don't feel strong enough, he is always being strong for you!

Denise :)