Kaidyn Jamiel

Baby Maya

2012-02-08T15:16:00.002-06:00

I have posted on several occasions about Baby Maya, KJ's NICU BFF. Here's a little about Maya's story from her mom Kristy!

Its been SO LONG!

2012-02-07T09:33:00.002-06:00

Wow, I didn't realize how long it has been since I posted on KJs blog. Time has surely flown by. There have been a few ups and downs since I last posted so I will do my best to update on all but they will probably not be in the order that they occurred, sorry.

KJ has been released from ALL therapy! Praise God! I was (still am) nervous about the ending of her therapy. Her therapist have been a part of our family and a big part in her great success. None wanted to stop seeing her but all said that on there visits they just played...she already knew everything!

KJ has still been battling recurring pneumonia the entire winter season. Just last week she had to go to the ER again with her 3rd cause this season of pneumonia. It was nothing but God that I was able to get an appointment scheduled with her pulmonologist and within a week she has having a CT scan of her lungs and a bronchoscopy. The CT scan showed that her lungs were completely covered with pneumonia (all but an area in her lower left lobe) and her bronchosocpy showed that she has some airways that are not fully opened and that she has some indications of reflux or aspiration in her bronchial tubes.

Treatment: for the pneumonia she has PIC line (long term IV) in her arm so she can receive IV antibiotics for the next few weeks. For the reflux or aspiration she will be started in nexium for reflux and will have a swallow test to see if she is aspirating (if food is getting into her broncial tubes).

Sounds like a lot but after a few rough days KJ is back at daycare, running and jumping around! KJ is truly a fighter and gives me strength everyday. Someone said to me the other day..."Wow, she is such a fighter, she has so much will, she will grow up to do great things!" And I believe God has a wonderful plan for her and this is all just her testimony!

Be blessed!

Birthday and Halloween Pictures

2011-11-03T18:28:00.000-05:00

Happy Birthday Kaiya Dawn!

Whew....2yrs

2011-11-02T10:49:00.002-05:00

On October 29 KJ turned 2. Boy how time has flown by and how blessed we have been. KJ is doing so great....even better than anyone expected. Thank you all for the prayers and support over the past two years. Through your prayers she was able to beat man's expectations of her and show truly what God can do! We love you all.

The Week Ahead

2011-09-25T19:17:00.002-05:00

Just wanted to post a quick update on KJ. This week she will be fitted, hopefully, for braces just to sleep in. We think that she needs the support but don't want to slow her down or frustrate her by making her wear braces during the day. Also, we will be discussing with her ENT on taking her adnoids out. I just don't see this winter going good if we don't. As soon as she gets a hint of sniffles she gets super congested and this time even anitbiotics didn't clear it up. So prayers needed this week! Will update at the end of the week with results.

Learning new things

2011-09-01T22:19:00.003-05:00

When I think back to the NICU and being told that KJ would be delayed, all I could do was prepare myself for it. I was more than ready to handle what was to come if we just made it out of the NICU. And here today KJ is doing better than I now I ever expected. She is counting, learning her colors (she may not get the color correct but she will name one lol), singing, dancing, and is an all around silly silly almost two year old. I couldn't have prayed for more if I tried. Matter of fact, I prayed solely to make it out of the NICU and the strength to handle what was to come after.

I will tell anyone the amazing story of KJ because I know without a doubt that it was God that got her through the NICU and to this point. And while KJ grows up daily and learns new lessons, I can't help but wonder how Kaiya would be now. But I know that she is with KJ daily and I am sure what fighting hard for her sister in heaven.

While blog post a farther between now I do hope that while prayers are still being prayed for KJ we don't forget that she did not start this journey alone. Kaiya Dawn will always be an important part in KJs journey.

Walking and Talking

2011-08-07T22:40:00.002-05:00

WOW! I had NO idea it had been so long since I posted, I hope there are still people that check. Kaidyn is doing sooooo good. She's walking and talking so much now. She is down to one session a month with all her therapies. She is in a new daycare right now and has just taken off. She is learning so much. She comes home singing songs, drawing, and talking about her day. And best of all she out by 8:30 hahaha ok not the best of all but that does help me :). I will post pics via my phone soon! Love you all for following the blog and thanks for all your prayers!

Family Reunion...

2011-06-20T14:47:00.003-05:00

We have had a blast the past week watching KJ walk. She of course does it in her own way and when SHE wants but that's her lol. This weekend was our family reunion. It was so great for the family to see her now. So many were excited to see how well she is doing as well as how big she has gotten. She was seen by a nutrionist Friday who says she is doing great and found she has gained 1.5 lbs in the past month! It is an ever occuring blessing to see her grow learn each and everyday. She is doing great with signing and is starting to talk more and more...she's a mimic-er.

Here She Is!

2011-06-11T10:05:00.000-05:00

It Official!

2011-06-05T19:46:00.003-05:00

That's right, it's official. Kaidyn Jamiel is walking!!! I just don't know what to do! I am so proud and excited! She is doing so great! LOOK AT GOD! I will try and post a video soon!

No, no, no, no.....

2011-05-09T10:54:00.004-05:00

So...that has been KJ's new thing. Everything is no no no no. *sigh* KJ has been doing great otherwise. She is just getting over a sinus infection and allergies are getting the best of her at times but she doesn't let it show her down too much. Keep praying! Thanks!

Picture Day

2011-05-03T10:27:00.002-05:00

Today is picture day for KJ. I am so excited. She has a special shirt enhanced my Nana!

2011-04-19T09:24:00.005-05:00

Kaidyn is doing so great. She is getting sillier by the day! She LOVES to make people laugh! She is starting to do several words in sign language. She knows please, more, eat, all done, and milk. Those are the ones she knows well. We are working on shoes and thank you. She is starting to walk while holding your hands and her therapist want us to work on her walking while we hold only one hand. Pretty soon she will be walking by herself.

PICS!

2011-04-12T13:45:00.002-05:00

Apparently she wanted to see if astroturf tasted like real grass lol

Breathing Treatments are Back

2011-04-12T13:32:00.002-05:00

Breathing treatments are back again. We have been doing the inhaler since her pulm. appointment on 4/1. She's had some ear drainage (yuck!), wet cough, nasty nasty nose, watery eyes, etc. It's like a mix between allergies and something respiratory. So we are back to it all. I really thought tubes would stop this. Wishful thinking! Now if only I could find a way to make her sit like a big girl during her ENTIRE breathing treatment. :/

Evaluations and such

2011-04-03T21:40:00.005-05:00

This week Kaidyn finally had her Cerebral Palsy evaluations. She saw neurology, orthopedics and physical medicine and rehab and they all agree that Kaidyn does have a mild form of cerebral palsy, periventricular leukomalacia (PVL) to be exact. They are confident that she will walk and have very little difficulty with day to day activities. They noted her muscle tightening and said her hips are not normally placed. All this will be a constant battle and right now we are unsure how it will play out. They plan is to just watch and see how it affects her as she grows. Therapy will continue as is and we will explore other treatments and therapies as needed.

Kaidyn also had a pulmonology appointment and she is doing great. Her pulm. doctor does want her to use an inhaler twice a day to help with her lungs. They believe she has asthma but she is too young to officially diagnose. So with her inhaler with got a spacer and a new friend named Spinner (her duck mask). The inhaler and spacer are used together since of course she can't use an inhaler properly.

Please continue to pray for Kaidyn as she continues to overcome obstacles that come her way. I will continue to update on Kaidyn's progress so please continue to check the site. Love you all and thank you for praying and following Kaidyn's story.

A Quick Update

2011-03-08T15:50:00.002-06:00

Just a quick update! Kaidyn is doing great! She is getting over pneumonia (prayerfully). She has been on antibiotics for soooo long so hopefully we are done! With antibiotics comes horrible diaper rash and loss of hair so pray for her please. She has been doing great with her leg braces and is starting to cruise, stand, and push/walk with her toys. I will see about trying to post a video of her so those not friends on facebook can see her live! Thank you all for following her story and praying daily.

2011-02-22T09:29:00.002-06:00

Kaidyn has been doing overall good. She has been doing good with her ear surgery...tubes are bright blue and clear. She has been having a really bad cough for a while and it never tends to really go away. We are in the process of seeing what the cough is and why nothing is clearing it. Her pulmonary doctor is exploring the asthma route. So right now we do 2x daily breathing treatments. Yay! She has her first cerebral palsy evaluation scheduled for March 31 in Temple. So prayers needed for that. She also has a speech evaluation on Friday. Many evaluations still ahead so many prayers still needed!

Ears Are Clear

2011-02-11T14:00:00.002-06:00

Well, KJ's ear procedure went well and post op was great! Tubes still in place. I think she is still having some upper respirtory issues. I was hoping they were related to the excess fluid in her ears but it appears its not. So, we will find out more next week when we follow up with pulmonary in Temple. Keep ya posted!

I haven't forgotten about pictures!

Surgery-Tubes

2011-02-01T14:56:00.003-06:00

This Friday, Feb. 4th Kaidyn will be having tubes put in her ears. Please pray for her, the doctors and the nurses. Her pedi says that he thinks her speech will increase extremely once these tubes are in because she has had some much fluid in them for so long.

Keep in mind that in the coming months she will be having her CP evaluations. I'll keep you all updated as those are scheduled and results are in.

P.S. I realize I haven't put pictures on the blog in a while. Stay tuned.....

Our Week of Doctors

2011-01-07T10:33:00.002-06:00

So this has been a busy/tiring week for us. As stated in the previous blog KJ had to go to the ER Monday night. After doing the follow-up with her doctor we determine that more than likely she didn't have a febrile seizure. Thank Goodness! So she still just has the double ear infection. She will need to have tubes placed in her ears so we have scheduled that for the beginning of Feb. Thursday we then had to go to Temple for our quarterly NICU follow-up visit. The OTs said she is doing great! She right on target with everything developmentally. The NNP said that she is doing good as well but would like for her to have an evaluation with the Cerebral Palsy Clinic and get a CP evaluation. Mostly due to her high muscle tone. She also had an appointment with Pulmonalogy who wants to try a few things to see if we can get her to start breathing better especially at night. She was also ordered to have an EKG done. So we go back to Pulmonalogy in Feb. to check her progress.

Please pray for all of her upcoming test. We all know her journey and knew it would end at the NICU doors. So continued prayers are needed.

First Trip to ER

2011-01-04T11:43:00.002-06:00

Kaidyn had her first trip to the ER last night. She has, yet again, another ear infection. After taking her to her pedi doctor and ENT yesterday it was determined she is going to need tubes put in both ears. By mid day she had a fever again but it was decreasing. Later that night she started having a hard time breathing and her lips started to turn blue. We took her to the ER and they believe she had a mild febrile seizure. It happens when the fever gets to high and the brain spasms a little. She's doing ok now and has no fever. Please pray for her and her health right now. I knew this winter season was going to be hard but I no idea it was going to be this hard.

Another Ear Infection

2010-12-22T08:38:00.002-06:00

Kaidyn is now on her third ear infection. Fun stuff. So the doctor is now beginning to talk about the possibility of tubes. Not too sure about them but I have heard that once they get tubes many kids no longer get sick as much. So we will see what happens after this ear infection clears up. We are getting ready for Christmas Day. Even though this is technically her 2nd Christmas to us it like her first, since this will be her first Christmas at home.

So Merry Christmas to all of KJ's blog readers. Thank you so much for your prayers and keeping up with her story. May God bless you all above and beyond your expectations.

The Pollard Family

2010-12-14T09:48:00.001-06:00

Please pray for the Pollard Family. They recently had twin boys born at 25 weeks. Both are in the NICU at Scott&White in Temple. As we know, they have a long journey ahead of them with many days of uncertainty. Keep their family and they babies in your prayers. Thanks!

Daycare

2010-12-08T08:42:00.002-06:00

Kaidyn has officially started daycare with week. *deep breath* I did okay. She's doing great! I'm excited for her to be around kids her own age. The good thing is that her daycare, Peas in a Pod, has cameras so I can watch her ALL DAY! She having little difficulty adjusting so that makes it easier for me to let her go each day. I can tell she has fun cause she is worn out at the end of the day. I am looking forward to all the things she will learn at daycare just from being around kids her age. Hopefully they will aid in her development and getting her to catch up. I can already tell she's wanting to attempt to talk more. That's really the area that started to lack. While she's always been a noise maker/screamer. She is still not saying actual words. Really I just want her to say Momma! Haha. But so far so good with daycare. I'll give an update on the total week this weekend.

Lucky 13

2010-11-30T08:49:00.002-06:00

Kaidyn is now 13 months and doing so great! Could really ask for better! She's crawling around everywhere, pulling up and everything, and on her way to saying 'Momma' (I can hope anyway :) ). She has gotten her braces now and had them about two weeks. And what do you know... She's too strong for them! She can still pull up on her toes! So back to Central Texas Orthotics we go! They already had to add an extra strap while in the doctor's office. Since then we found that she can take her left brace right off! I don't know what we are going to do about her. I can tell she's going to be a climber because she loves to pull up and hang on/off things. She is the strongest baby I've ever seen!

This week she has been under the weather. Another viral infection it seems. We've been fight fever, congestion, cough, etc. No ear infection as of yet but I think its coming.

It's Been a YEAR!!!

2010-11-09T09:37:00.005-06:00

Her Birthday Outfit

Too cool!

Also in remembrance of Kaiya Dawn who would have been 1 on 10/23/10

I can't begin to explain how this past year has been. Yes I can! A ROLLERCOASTER! And one I didn't want to ride but not can't seem to get off. Ups and downs, twist and turn and even some circles big and small. But what a GREAT year it has been. Kaidyn has been such a blessing! When I look at where this blog started, with such sadness and uncertainty, I can't help but thank God for his blessings in our lives. Kaidyn would not be here today nor doing so great had it not been for the Lord and his great mercy. I just can't thank him enough.

So now at the one year mark we are oxygen free with no last effects from being a 24 weeker that we can see. Well besides the developmental delays that are expected she is doing great! She's getting ready to get her braces here in the next few weeks. She's crawling!!! And wanting to walk so hopefully when she gets her braces she will be on the move in no time.

Thank you all for being with us through out this year. It seems like its been so much longer. Can't believe all the events took place in just a year. Please continue to pray for us and especially for Kaidyn as she progresses and plays catch up! Thanks again!

Leg Braces and Such....

2010-10-12T22:40:00.002-05:00

We found out that Kaidyn will have to get leg braces to help with her foot position. The ECI physical therapist said that its best to correct now and hopefully she won't need them long term. The issue is that when we stand her up she stands on her toes and won't put her feet flat. Her left will go down with pressure but her right foot is a little more difficult. She has high muscle tone in her legs so the braces will help with that. I mean she has calf muscles already!!! She gets fitted for her braces later this month.

Yesterday (Monday) Kaidyn had an eye appointment in Temple to check and make sure her retinas and all that looked good. Came out with a good report! Eyes are straight and tracking well! She is near-sided and will need glasses in the future but nothing to worry about for now. Back in a year for another check!

Today I found out that Kaidyn now has an ear infection. Two weeks ago when I took her to the doctor when I thought she had an ear infection she didn't it was viral. Today I took her just because she was still congested and having a hard time breathing (no fever or any other signs) and now she has an ear infection. Go figure! So we are on antibiotics for the next 10 days. This cold/flu season is not starting how I wanted. Luckily she was approved for the Synagis shot (to protect against RSV) so that puts my mind at ease... alittle.

KJ Update

2010-10-05T15:59:00.002-05:00

Kaidyn has been good overall. Sorry its been awhile since I posted. I've been incredibly busy! Anyhoo, her surgery went great! The cyst is gone and it was just a skin cyst. She recovered great. Didn't even phase her one bit. She seemed less cranky after surgery than she had been all week prior to. So that's a good think. Her post op went good as well.

She has gotten her first cold. She was getting a cold and I thought maybe an ear infection so I took her to the doctor. Her ears were fine so they gave her a flu shot and then her cold got worse. So we did breathing treatments for a few days and its gotten better. She has been super stuffy but its draining now (ewww..) So she get suction daily. I wish we had the suction thing from the NICU that was awesome! But we work with what we got.

I wanted to post also and let those who follow her blog that Baby Chole Gallaway passed away on September 21. She was 8 months and was in the NICU the entire time. Please pray for her family. She leaves behind her mom, dad, sister, brother, and a host of family and friends; many who never got to meet her face to face. Her services were so nice, touched my heart. I know Kaiya was there to welcome her into Heaven. Its nice to know she has a friend there with her.

We we are on the count down to a year! Here we go!

Surgery Friday!

2010-09-15T14:29:00.002-05:00

So, Kaidyn will be having surgery on Friday. She has a cyst in her chest will the docs want to have removed while its still small and she's still small (to reduce scar size). Prayers needed! Not too nervous about the surgery itself, more nervous if she has to intubated. That brings back horrible memories.

An update in general....

Things have been going good. She had a Temple NICU follow-up appointment recently and everything was good. Its soo funny, cause its like she knows when they say she's a little behind in an area because within the week she's doing it! ECI here in town comes to work with her twice and month and each visit she's moving right along. She will be crawling in no time. She has started to roll back to tummy now and gets up in crawling position.

She is getting two teeth in the bottom so a teething baby she has been. Which means, she's been CRANKY! Goodness, how many teeth do they get? She is growing up so fast. In a little over a month it will be the one year mark. I look at our journey and just praise God!

More Changes

2010-08-11T03:02:00.002-05:00

In an attempt to start blogging more of what Kaidyn and I do, I decided to make some changes to the blog. Those still following please let me know what you think. I am new to the customization of blogs. I could pay someone and sleep, but it's fun to finally get it all worked out. So instead I stay up until 3am and work on it.

Update at Last

2010-08-04T19:27:00.006-05:00

Kaidyn and I after her dedication

Ready to go ride my horse!

Must be cool to wear sunglasses inside

Playing in the Grass

Okay so its been a LONG time since I posted, mostly because our day to day is not very interesting anymore. But here's an update on Kaidyn and I.

Kaidyn is now 9 months! I can't believe it! Shes 13lb 7oz and 24in long. She is doing so good! She is starting to sit up, mostly with the assist of a boppy because she doesn't stay still enough. She is a busy body! The comment we get most is that she is a wiggle worm! Still no crawling but she tries. I personally wouldn't be surprised is she skipped crawling and went straight to walking. We did discover a cyst on her chest over the past few months and the ENT doctor wants to have it removed. Her first procedure. :( She will have to be put to sleep but it will just be an in and out procedure. The doctor said its not urgent and does not believe the cyst is hurtful to her. So we will have it removed soon. Other than that, Kaidyn is doing great.

We had her dedication ceremony this past Sunday at church. It went great! She was sooo beautiful of course!

An update on me, I just got accepted to the Blinn TEACH program. I am getting my certification to teach science and hopefully math.

I'll try not to make my next post two years from now!

Coming Soon

2010-07-25T23:49:00.001-05:00

An update will be coming soon as well as makeover of the blog.

She's 7 months!

2010-06-04T10:56:00.006-05:00

My little aggie

Kaidyn making her spitting face

First set of ponytails

Yummy sweet peas!

I'm all ready for church

Since the last post Kaidyn has grown so much in such a short period of time. She talks way more now and has even learned how to spit! It's her favorite thing to do :). She has now started to eat baby food, sweet peas to be exact. The doctors and nurses alike are still so impressed with her progress. She has been called the miracle baby by many.

Its so funny I never realized how small she really is. I mean I've heard of a few people who have had newborns her size or bigger. But recently it has become apparent to me how tiny she really is. While in a Dallas mall a lady walks up and of course comments on how cute she is then the next question always is... how old is she. So of course I say, oh she 7 months. And comes the surprised look... WHAT! She's so tiny. The young lady had her 8 month little girl in the mall with her... huge difference. I've also met a 14+ lb 2 month old and a lady with a 26+ lb 6 month. So I have to say an 11lb 7 month old is tiny. Also, at her check up appointment this week Dr. Ransom plotted her growth points, which are not on the chart, and says... "She's growing which is good but she will always be small, she may not make it on the growth chart until she's two" So I guess I'll have to get use to the surprised looks when asked the infamous question..."How old is she?"

NICU Follow-up Appointment

2010-05-22T00:25:00.005-05:00

Kaidyn has her first NICU follow-up appointment on Thursday and it went great! She is now weighing in at 11.4 lbs.

We started off the day visiting the very special Maya and her mom Kristy in Waco. Maya is doing good since she has been home but is still a tiny little Mayabug. She and Kaidyn had a good time playing and Kaidyn showed her all her tricks. It was so cute!

We then went to Temple for our follow-up appointment. First the occupational therapist ( the same one that visited us weekly in the NICU) evaluated Kaidyn. By doing various exercises with her she was able to determine how far along she is developmentally. And Kaidyn is doing great! She measured about 3 months, which is how old she is corrected, and even four months on her motor skills! She showed her that she loved to roll over and kick and play. She's a regular wiggle worm and that fun paper on the doctor's table added to the fun and excitement. The only thing she scored low on was language because she would show her she could laugh, but she does here at home.

We then got to see another familiar face when the neonatal nurse practitioner came to do her evaluation on Kaidyn. Again, everything looked good. By this time Kaidyn was worn out from the kicking and the rolling.

All in all it was a great trip which we will make again in three months!

Lifts Head and ROLLS!!!

2010-05-05T18:25:00.003-05:00

Today Kaidyn was playing on her tummy, lifts her head and rolls over to her back! Yay! I was so happy. She has rolled over on the couch but I have been waiting for her to roll over on a flat surface and today it happened! Kaidyn is doing great! Officially off oxygen, 10.5 lbs 22.5 in. She is becoming such a big girl. Loves to stand and jump and even tries to "talk." She also received her first cereal bottle a few days ago and LOVES it! It is also helping with moving up her bed time to a decent hour.

How Preemie Moms Are Chosen

2010-04-24T22:59:00.001-05:00

How Preemie Moms Are Chosen
(Adapted from Erma Bombeck)

Did you ever wonder how the mothers of premature babies are chosen?
Somehow, I visualize God hovering over Earth, selecting his instruments
for propagation with great care and deliberation.
As he observes, he instructs his angels to take notes in a giant ledger.
"Beth Armstrong, son. Patron Saint, Matthew. Marjorie Forrest, daughter.
Patron Saint, Celia. Carrie Rutledge, twins. Patron Saint ... give her Gerard.
He's used to profanity."
Finally, he passes a name to an angel and smiles. "Give her a preemie."
The angel is curious. "Why this one, God? She's so happy."
"Exactly," smiles God. "Could I give a premature baby a mother who knows no laughter?
That would be cruel." "But does she have the patience?" asks the angel.
"I don't want her to have too much patience, or she'll drown in a sea of self-pity and despair. Once the shock and resentment wear off, she'll handle it.
I watched her today.
She has that sense of self and independence so rare and so necessary in a mother.
You see, the child I'm going to give her has a world of its own.
She has to make it live in her world, and that's not going to be easy."
"But Lord, I don't think she even believes in you."
God smiles. "No matter, I can fix that. This one is perfect.
She has just the right amount of selfishness."
The angel gasps, "Selfishness?! Is that a virtue?"
God nods. "If she can't separate herself from the child occasionally, she will never survive.
Yes, here is a woman whom I will bless with a child less than perfect.
She doesn't know it yet, but she is to be envied.
She will never take for granted a spoken word.
She will never consider a step ordinary.
When her child says 'mama' for the first time, she will be witness to a miracle and know it.
I will permit her to see clearly the things I see – ignorance, cruelty, prejudice – and allow her to rise above them.
She will never be alone.
I will be at her side every minute of every day of her life because she is doing my work as surely as she is here by my side."
"And what about her Patron Saint?" asks the angel, his pen poised in the air.
God smiles. "A mirror will suffice."

2010-04-20T16:11:00.000-05:00

April

2010-04-20T15:53:00.004-05:00

Kaidyn has been doing great! She is growing and advancing daily. She's now 9lbs 10oz. Shes is doing so great! We are now just gearing up for the March of Dimes walk May 1st. She had her first appointment back in Temple. It was an eye appointment and it went good... I guess. All he did was shine a light in her face and say "Yep, her eyes look straight." Yes, we drove an hour and a half for him to shine a light in her face. It took us longer to wake her up for the appointment then the actual appointment. It was nice to see old friends. That's all that's been up with her lately. I'll try to post more regular :)

March for Babies

2010-04-07T14:35:00.004-05:00

We have been doing great. Kaidyn is growing so big now. Shes 9lbs 5oz! WOW!! Shes been progressing so great. She tries to talk in her baby noises and stand up. Tryings to roll and scoots on the floor. She is doing so great. The ECI team says she doesn't need their services now she developing on time and beyond. So we are so bless and happy about that. Easter was great! She had a very beautiful dress and we went to Great-Granny's in Somerville for the day. She was so alert and talking it was wonderful.

I am waiting to get a team together for the March of Dimes March for Babies walk May 1st. Our team name is K Squared ! We are walking in memory of Kaiya and in honor of Kaidyn. I would love it if the people who have been following their story would join us on that day. Click on K Squared and register for our team and/or make a donation if you would like. If you will not be able to walk with us still feel free to make a donation and help raise money for the March of Dimes.

Double Doozie

2010-03-24T23:17:00.002-05:00

Sorry it's been so long. Wanted to post pictures but my computer is down so posting by phone. Kaidyn has been doing great! The doctor is very pleased with her progress. She now weighs 8lb 6oz. The only thing is working on her weight gain. Although she's gaining he would like for her to gain more. We met with the neo doctor her and he wants her to gain more as well. He also has a plan to wean her medicine and oxygen. We are now down from 1/4 to 1/16 and he wants her to be at 1/32 within the week. So that's the goal. Today she also had to her two shots, one in each leg. So today both she and I were not feeling well so we had a lazy day. She's becoming more active, rolling and scooting even trying to stand up! I forget she's only 1 month adjusted. We are having a great time even if I don't get much sleep. I'll post pictures when I can.

MENDing

2010-03-11T12:56:00.003-06:00

Kaidyn has been doing so good. She is growing longer by the day. She gets more alert as the days go by. She is rolling over now! She rolled over on the couch. She is trying to sit up and even stand up! She is moving right along. I think she will be the smallest crawling baby. ECI came by mostly to fill out paper work. We will meet with a physical therapist at the end of the month to do an assessment and determine if she needs services right now. So we will see what they say.

This week I went to my first MEND (Mommies Enduring Neonatal Death) meeting. I think its going to be a good group for me to be in. Somewhere I can talk about Kaiya with moms who understand what its like to lose a child. The only place where I'll be Kaiya's mommy. It was wonderful to meet these strong women.

Update on Maya:

Please pray for her. They just found out that because of her rickets she has 9 fractures throughout her body. They are comprising a regimen for to strengthen her bones but she is in pain now. So continue to pray for this precious baby.

Many Prayers Needed

2010-03-05T17:06:00.002-06:00

Maya is in need of your prayers. As I previously stated Maya still has two surgeries to undergo and now possibly a third. We found out today Maya has ROP (retinopathy of prematurity) Basically, due to the amount to oxygen she has had to be given (as all mirco preemies) there is an increased risk of retina detachment which is happening to Maya. We will know next week if surgery will for sure take place. Right now Maya needs all your prayers.

Update with Kaidyn:

Kaidyn is doing good and growing big... well long. She doesn't look any bigger but she is stretching out. She rolled over for the first time on Thursday March 4th so we were very excited about that. Continue to pray for her development. We meet with the ECI organization (Early Childhood Intervention) to check her development.

First Week Home

2010-02-27T00:30:00.003-06:00

Our first week home has been bitter sweet. While I am great to be home in my own bed and familiar surroundings, I miss Temple (did I just say that?). I made wonderful friends there and of course I miss the nurses. Kaidyn has been doing good in her new surroundings. Nothing much has changed for her. We have kept with her same schedule from the hospital. I am having the harder time. Her feedings are every three hours and breathing treatments every six. Blah Momma tired!!! She had her first doctor's visit this week. She is doing great. She was 6lb 11.9oz when we left the hospital last Friday and she is now 7lb 4oz. He is very pleased with her growth and how well she did while in the NICU. Now we start to slowly wean her from her medicine and oxygen and just make sure she continues to grow. Hopefully soon we will begin to work with Early Childhood Intervention to make sure she is where she needs to be developmentally and stays on track. We will see how she progresses in the weeks to come.

Maya is doing good as well. She is weighing 2lb 13oz. She is doing great with her cannula and in the process of being weaned off of it. Continue to pray for her as she still has 2 surgeries to undergo before she leaves the NICU.

113 Days Later

2010-02-20T22:58:00.006-06:00

After 113 day in the Scott & White Neonatal Intensive Care Unit, Kaidyn Jamiel Walker is finally home! I just can't believe this day has come. The Overnight Stay went well, although waking up every 3 hours will take some getting use to. Saying goodbye to everyone in the NICU was bitter sweet. I will miss all of them! From Dr. Govande (her neo) to all the nurses, social workers, and other staff. Their faces became a regular part of my day. I realized quickly that although I have felt out of order being in an unfamiliar town for almost 4 months, a regular routine had set in. This irregularity had become normal. Checking out of the Ronald McDonald House was also a very bitter sweet moment. The entire staff there has been excellent my entire stay. I had really moved in and it became apparent when time to pack up my room. I guess the good thing is that it wasn't really goodbye to the RMH or to Scott and White. Both will be a part of our lives for time to come with follow up appointments, visits to see old friends, and NICU reunions.

She did very well on the drive home, slept the entire way. She seems to like riding in her car seat. Getting settled in at home is slow going. Getting use to moving around with her equipment will take some getting use to. She has been doing great since she's been home.

I want to thank you all so much for following us through this part of our journey. What a roller coaster this was. But do not think the blog will end here. Kaidyn and I have a wonderful journey ahead of us and I will continue to post the progress of this miracle that has touched my life. Continue to pray for her and her development. Our next challenge is meeting those developmental milestones and staying on track.

I will also continue to update on Baby Maya. I know many have been praying for her and please continue. Her mom and I have become great friends so I will keep you all updated. Maya is on now on a high flow cannula and is doing wonderfully. She has started taking a bottle now as well. It seems that her and Kaidyn have had a very great week. Maya just seems to be pushing full steam ahead now. I guess she wants to join her buddy Kaidyn on the "outside" :)

Again thank you all for your prayers and continue!

Overnight Stay

2010-02-18T14:46:00.001-06:00

Well we are going home tomorrow!! I can't believe the day is actually coming. I seriously thought I would be in Temple forever. Tonight I will stay overnight at the hospital with her and learn all the equipment and tomorrow is discharge day!! Praise the Lord. Baby Kaidyn is coming home.

It's My Due Date!!!

2010-02-17T00:21:00.002-06:00

Today was Kaidyn's due date. I can't believe it! Its seems so odd that today was the day she was suppose to be born and here she is heading toward 4 months. She's still been doing good. Slowly getting ready to go home. Waiting right now for her doctor to come back from a conference to give us the actual time line. Not holding my breathe though, if the nurses let it slip and tell her she could be coming home she; she may decide to stay longer. She just loves her nurses.

Its been so long since I posted because I had tendinitis and trigger finger in my right hand. It was a pain!!! All better now, for the most part.

I'll try and keep you posted on the plan for going home. Doctor should be back tomorrow or Thursday.

Maya is have a good day as well. Continue to pray for her. Although today was a good day. This weekend was pretty bad and she has some type of infection. We thank God daily that Scott&White is so proactive and immediately start antibiotics so she is doing so much better.

Grand Tour of the NICU

2010-02-10T23:07:00.002-06:00

So Kaidyn decided she wanted to see EVERY part of the NICU. She is now in her very own suite. She's been doing great with her respiration. We are heading back toward home again. She is now 6lbs. She is getting so big. They had to reduce her fluid intake so she only gets 45 mL a feeding but it's some high calorie stuff. All in all Kaidyn is doing great.

Maya has been doing good as well. She's still on a CPAP machine and loving it a little too much. She has started feed but has not been able to really digest it yet. Because she's not getting fed she is getting Rickets so please pray. Pray also for motility in her bowels. But over all she's gotten over her infections and just working on eating right now.

Not Much Has Changed

2010-02-05T23:10:00.003-06:00

Kaidyn is doing about the same. Her respiration continues to be over 70. They performed a heart ECO on her yesterday to see if there was an issue in her right ventricle causing her respiration to be high, and determined that she has two small holes in her heart; one between her atriums and one between her ventricles. Neither hole is concerning and both should close on their own. They did not find and issue that could be causing her to breath so rapidly. The current diagnosis is...her lungs are now in a chronic diseased state, she has bronchopulmanary dsyplasia (BPD), which will cause her to breathe fast. To that add getting fed a high amount of volume. This excess fluid leaks into the lungs causing them to work harder leading to faster respiration. So at this point they have lowered the amount of milk she gets and increased her diuretic hoping that with less fluid it will be easier for her to breathe. We are now in a waiting game. She no longer gets bottles at every feeding due to her high respiration so she will have to start that over again (she's beginning to get lazy with her bottle) and she is still up on the liters of oxygen she is getting so she is being weaned from that again. Not sure how much longer we have, really just depends on her and which way her breathing goes. Because of her BPD she will be coming home on oxygen so we have to get her to that state but right now her respiration is too high to talk about going home. Continue to pray for Kaidyn for lung strength, brain strength, bone strength, stomach strength, and growth strength. Pray specifically she definitely needs these things in particular.

Not So Good Days

2010-02-02T16:24:00.004-06:00

Kaidyn is not doing so good right now. We were on our way out the door but she had other plans. She is having a hard time breathing. Her respiration is suppose to be under 60 but on a good day they are 68 or so and go as high as 100. She has had to have her feed tube put back in because of it. High respiration can cause her to spit up and choke. We are also back in the "Towers" or the actual NICU so she can be closely monitored. She has started breathing treatment and has been given more diuretics. Please pray for her lungs to get strong and pray against infection. So far all her test have come back negative.

Maya is doing a little better. She still has her infections but she is hanging in there like a strong little girl.

Continue to pray for all the babies. Another baby needs special prayer. His name is Ryan and he had to have a large portion of his bowel removed today. The doctors have given his family a 50/50 chance of survival. His twin Ragan also needs your prayers. Both are very sick.

Little Update

2010-01-28T20:34:00.002-06:00

Kaidyn is hanging steady. Still going through the stuff with her oxygen. Hopefully soon well get it straightened out so we can go home. They are in the process of reducing her flow again. So pray for her lungs still and that she is sheltered from infection.

Maya is really sick so she needs many of your prayers. She has 2 strains of staph and pneumonia in her left lung. She's hanging strong but please pray for her little body. Pray also for her mother. It's hard hearing all this news by yourself.

So continue to pray for all.

Photo Shoot, Snap Snap

2010-01-27T23:47:00.002-06:00

Kaidyn had a big day today. The hospital's marketing team came by and took pictures of us. She did a great job. I'll post them once they email them to me. Of course they thought she was just too precious. Who knows you may see Kaidyn and me in a Scott and White publication.

We are beginning to talk about going home but Kaidyn has other plans. She had to have her flow turned up today. She's been really congested lately so they had to deep suction her today and they got a lot of gunk out. She also had to get an extra diuretic. They seemed to work so hopefully soon she'll be ready.

Pray for all the families here. It seems that lately there have been more families with really sick babies lately.

Prayers Needed for Maya

2010-01-26T18:58:00.002-06:00

Maya really needs all of your prayers. She has an infection that the antibiotics are not helping. They are waiting for the results of the culture but it will 24-48 hours before they come back. They are thinking Maya has a fungal infection and that would not be good for baby Maya. Please please pray for Maya and her family.

Three Months Today

2010-01-23T13:31:00.003-06:00

I couldn't let today go by without remembering Kaiya Dawn Walker. She would have been three months today.

I love you my little Angel. Watch over your sister. I know you are with her every time she smiles in her sleep. She gets to play with her own special Angel.

All Bottles, Bottles, Bottles

2010-01-23T13:09:00.003-06:00

Kaidyn has had a very good week. She is now getting a bottle at every feeding! And that means NO MORE FEEDING TUBE!!!! I am so happy for her! I can see home at the end of the tunnel. She is now 4lb 7oz so she is gaining weight! We are just waiting for her to come out of her isolette and then we will know more about a timeline to go home. It is still 50/50 if she will come home on oxygen but right now I just want to go home.

The RMH is packed! I have met some great people here so I am not too home sick but there is still nothing like being home.

Baby Maya is doing good as well. She is on a conventional ventilator and her parent now get to do Kangaroo Care with her. She's wearing clothes and is now starting to recieve breast milk. She will be one month tomorrow! Time sure does fly!

I have come to realize how truly blessed Kaidyn has been. Maya's mom was telling me that the doctors were telling her how rare it is to get through this journey with no surgeries or brain bleeds. And praise God, Kaidyn has had neither. She is truly a blessed little girl. Continue to pray for her that her lungs continue to strengthen. Pray for Baby Maya that she grows strong, her lungs grow strong. Pray for all the babies in the NICU. Daily I hear of babies having to go through life threatening surgery. Just the other day Kaidyn's doctor said she has already gone through more in her life than any of us every will. So true, these babies are filled with so much strength we just want God to comfort them in their pain.

Pray for the parents here, that they stay strong through this long journey. All the parents here are bonded through this journey. We are part of a club that no one asks or wanted to join, but members we are. It is not easy to be unexpectedly lifted from your normal life into the life of a NICU parent. Where your days are filled with hospital visits every 3-4 hours, little sleep, your heart stopping every time your phones, praying its not the NICU, wondering how long you will be here, a week, 2 weeks, or like us 3 months and counting. Being separated from your family is never an easy thing. I just ask that you pray for the babies but don't forget the parents. We all need your prayers that is the one thing we all really need.

2010-01-17T23:21:00.000-06:00

Slow Progress

2010-01-16T22:11:00.002-06:00

Today Kaidyn made a little progress. The temperature on her isolette went down and she has been increased to two feeds by bottle then one by mouth. She did okay with the second feeding through the bottle but she sometimes tries to eat way to much in one swallow and chokes herself, but she is working through it. She is now weighing 4lb 2.1oz. As Always pray for Kaidyn and her progress and all the other babies in the NICU especially Baby Maya.

The Goodness of God

2010-01-16T00:25:00.003-06:00

Kaidyn is still doing wonderfully. She is eating good and doing good with her temperature. Today Dr. Govande (her doctor) said that once she is getting a bottle at every feed and our of her isoletter we will know more about when she will come home. Hopefully that will be in the next week or two. She is still right at 4lbs, 4lb 0.6oz to be exact. She is on a diuretic so that is why she isn't gaining as fast as before. Continue to pray for her lungs. We are praying that she won't have to come home on oxygen, right now its still a 50/50 chance.

Baby Maya Update

Baby Maya made it through her surgery tonight. It was suppose to last an hour to an hour and a half, it was done in 30 min. The doctor said that he did not have to stop as many times as usual. He also said it was the best (conditions wise) surgery he's done on a baby her size. The next 2-3 days will be the hardest because her body will be adjusting to the surgery. She may get worse before she gets better. Continue to pray for her and her family during this time. Baby Maya has shown to be a real fighter.

Pray for Baby Maya

2010-01-15T13:33:00.001-06:00

Please pray for Baby Maya. She will be having surgery on her heart today between 4-6pm.

Prayer Needed

2010-01-12T23:47:00.003-06:00

Kaidyn is doing good. She weighs 4lb 1.6oz! She growing big. She's been doing about the same with her oxygen and everything. When she got sick last week with a cold we had to start all over on the road to getting her in a crib. So they are starting to lower the temperature on her isolette again. We have a few more weeks left here. She needs to be able to hold her temperature, bottle feed every feed, and be more consistent with her oxygen but overall she's doing good.

Prayer is needed for Baby Maya. Her parents found out today that her PDA has opened back up and one of her arteries are swollen. She has been started on steroids to prepare her lungs for surgery. The steroids could help close her PDA and cause her artery to no be as swollen but if on Thursday they see no progress she will have to have surgery on Friday. Baby Maya is only about 1 lb 1.2 oz. She has already had one major surgery. She is only two weeks old. Please pray for Baby Maya and her family. Another surgery would be a lot for her tiny body to handle. So send many prayers this way.

Report

2010-01-10T23:52:00.004-06:00

Kaidyn is still doing good. She is still battling with her oxygen. She is just not consistent with it yet. She still has some hurdles to to jump before shes ready to go home but at least we are on the downhill. Yesterday, Kaidyn got another special visitor. Since my Mom will be watching Kaidyn often I felt it was necessary that she take the CPR class they require everyone to take. Since the class was in the NICU conference room afterwards Mom got to see Kaidyn! I am glad she got to see her after her many weeks of sitting in the waiting room. Kaidyn weighs 3lb 14.8oz now! 4lbs is right around the corner.

Ronald McDonald House Prayer Request:

Kaidyn and I would like for you all to please pray for Baby Maya. She was born at 24 weeks and weighed 1lb 4oz just like Kaidyn. She has had to have surgery on her intestines and now has a colostomy bag. Her mom, Christy, has been very strong but could definitely use the prayers from some warriors because as we know, she has a long journey ahead of her.

Pray also for Julia and her family. I didn't meet them personally but this morning after check in Julia passed out in the shower and had to be taken to the emergency room. Her baby was life flighted here early this morning and did not make it through the day. The baby passed away around 4pm. Please keep their family in your prayers.

Back for a Second Try

2010-01-09T00:53:00.002-06:00

Kaidyn went back into the Continuing Care Unit today. She is doing really great! Taking a bottle 3x a day. She is now weighing 3lb 12.2oz!! She was taken off her high flow cannula and put on just a regular cannula. We are waiting for her to not need that oxygen anymore and then we will be good to go so pray pray pray for that! Our time here is coming to a close and its sad but happy. I am just so ready to get her home!

We are back on track

2010-01-05T16:01:00.003-06:00

Kaidyn is have a good day today. She got to start back bottle feeding today. I am not sure I posted about it but she was getting a bottle before she got sick and had even drank her whole feed from it. She was at 27mL before she got sick and she is back to 18mL. She drank all at 18mL today. She is getting the hang of taking a bottle. She is still gaining weight even after not getting feeds for about a day. She is 3lb 7oz as of last night. She is growing so big! Hopefully she will continue to gain weight, I am wondering if she is really that big because she does have an IV so we will see once its taken out. But all in all, Kaidyn is still doing good. Still waiting till she doesn't need that oxygen anymore. That will be last thing we wait for before she can come home. The end is so near and I getting anxious now! I am SO ready!

When Praises Go Up, Blessings Come Down

2010-01-03T15:34:00.004-06:00

Kaidyn is ok. Her stomach and intestines look good. They have started her feedings back at 10mL and will work their way back up. She is still not holding her temperature so they think she just has a viral infection like a cold or something. Thank you all who prayed.

Prayer Warriors, Kaidyn Needs You

2010-01-03T00:42:00.002-06:00

Kaidyn is not having a good day. She has not been able to maintain her temperature. No matter how high they turn her isolette up she remains cold. This and other changes in her condition is leading the doctors to think she may be getting sick. She had several test run today and some xrays. Her first xray showed "bubbles" in her intestines. They are not sure if its a bad spot or stool sitting in her intestine. After another xray a different spot appeared in her intestines. We are waiting for her 6am xray to see if these spot move indicating stool or if they could be something serious. Until then she is not being fed. Pray pray pray that is just stool. They haven't said much but if its something more then it will likely lead to surgery. Please pray for Kaidyn! I'll keep the blog updated as I find out more information.

Happy New Year!!!!

2010-01-02T00:21:00.004-06:00

Kaidyn's last picture of 2009

Happy New Year from Kaidyn and me! My God Bless you in this new year. Kaidyn has been doing good. She is up on her oxygen now that she is off her steroids but that is expected. Other than her need to still have the oxygen she has been doing good. She has been a little cold lately but we are keeping her bundled up. She is now 3lb 4.7oz, so she is consistently gaining weight which is good. Our holidays have been going good. Continue to pray for her lungs, we need her to come off the oxygen before she comes home.

On the Move

2009-12-28T23:33:00.003-06:00

Kaidyn is doing awesome! She is no longer on steroids and has been doing good without them. Her flow is doing to 1 L and holding steady. Kaidyn made a move tonight to the Continuing Care Nursery. This means she is no longer sick and needed the intensive care. She is still in the NICU but she's moved up a step. Kaidyn now weighs a whopping 3lb 0.2oz!!! I can't believe that she's 3 lb already! She is really doing big girl things!!!!

Oh and I forgot to mention that Kaidyn had a very special vistor for her Christmas. Her Papa got to see her and she loved it!

Merry Belated Christmas

2009-12-27T01:36:00.002-06:00

Merry Christmas (2 days late :) ) Kaidyn had a wonderful Christmas! She has been doing great. Her flow has been decreasing daily, as well as her oxygen. Her temperature has been great so she is ready for a crib. However, she is a little too small so the doctor has to approve it. Her feeds are increasing and she received a bottle for the first time yesterday. She only ate 3 mL but it has vitamins in it which as really nasty. She will start slow with the bottle and only get it once a day. As she does good with that they will increase the amount of times she gets a bottle. She is growing so fast ( now weighing 2lb 11.5oz) and we are getting closer to taking her home.

Baby Zack got to go home on Christmas! Baby Jocelyn will be released from the hospital in the next 2-3 weeks.

We are all doing great and had a great holiday.

Wonderful Day!!!

2009-12-22T23:38:00.005-06:00

Kaidyn has had a wonderful day. She is way down on her oxygen, even got to 21% for a little bit. Her flow is now at 3.5 L and it started at 6 L. She has been doing so good and maintaining her temperature. She may even get put in a "crib" by Christmas! She had her eyes checked today. It was hard to watch but her eyes are looking good! They are going to start checking her eyes periodically because a side effect, so to speak, of receiving oxygen for expended periods of time is retinal detachment. So her eyes are looking good. Hopefully over the next week she will be off oxygen, pray! Kaidyn is doing big girl things!!!

Growing...

2009-12-20T12:02:00.002-06:00

Kaidyn is doing wonderful. She is getting big, slowly. She weighs 2lb 9.5oz but gains and loses weight daily so it a slow process. She had to begin steroids again. Her oxygen need kept increasing daily and they were unable to decrease the flow (amount of pressure the oxygen is being push through her cannula). Not wanting it to come to putting her back on the ventilator, her doctor decided that another small round of steroids would be best. She is doing great while on them and her oxygen has come way down. The goal is 21% oxygen, which is the percentage of oxygen in the air we breathe. Last night she was sitting around 25-30%. She is tolerating her back now and we are happy about that, her head was starting to get a little flat on the sides. Other than that she is doing great and the preparation for her to come home begins. That time is getting closer and if she continues to do great she will get to come home early! Pray pray pray for strong lungs! Her oxygen is the only thing standing between us and home (that and the fact that she needs to be at least 4 lbs before she leaves).

Special Visitors

2009-12-17T01:22:00.002-06:00

Today I received some special visitors. Lindsey and her 3 year old son Andrew came to visit me. Lindsey is a mom I met in the twin moms club. We had a great lunch at my favorite place, Chick-fil-a. It was nice to talk with someone who has had to go through a NICU experience like mine. Little Andrew was so funny. He had just had a procedure done and was a little loopy from the medicine. Read about Andrew and Adam's story and see how these two miracle boys are doing.

Kaidyn is doing good and has gained more weight. She now weights 2lb 8.2oz! Almost at three pounds. Her feeds are now based on weight so as she gets bigger she will get more food. In about a two weeks she should begin bottle feeds. She is having some issues with her oxygen. They are having a hard time getting her percentage of oxygen to come down. Also, the pressure/rate the oxygen is flowing through her cannula is not able to be weened because her oxygen need increases when they try to decrease it. Pray for strong lungs for Baby Kaidyn. If she is not able to come down on her oxygen over the next month they will begin to talk about when we can do to get her to need less oxygen or possibly she could come home with an oxygen tank. So pray for her.

Mata Update: Baby Jocelyn when through her procedure and they will be able to operate here in Temple. She will however have to wait until she is around 1 year old to have the surgery. This means she will come home with a colostomy bag of some sort. She still has some time before she comes home but it will be sooner than expected now that the surgery has been put off. Continue to pray for her family.

Big Clothes!

2009-12-15T01:45:00.004-06:00

Kaidyn is doing great! No heart rate drops lately which is good. She is still eating good getting 22 mL every 3 hours. She now weighs 2 lb 6.6 oz. She had lost about an ounce and but quickly gained it back. She got a bath today and did very well, no crying. Her clothes are super big on her and they are just preemie! I still can't get over that. But she looks so cute in them. She is getting spoiled already and prefers to be held. When I am holding her she is in a deeper sleep and down on her oxygen. Today when I stood up to put her back she immediately needed more oxygen like she knew I was putting her back in her isolette and didn't want to go. She got really upset. I wish I could just hold her but I can't. Continue to pray for her. My worry now is how long she will require oxygen. Pray her lungs go strong and that she will come down on her oxygen need.

Tuesday Baby Jocelyn Mata will be having a procedure that will determine the extent of her future surgeries. A recap: Jocelyn is the daughter of Jane and Gabriel. She was born with intestinal issue and complications. She had to have surgery at one day of life to separate her intestines. She will have a series of more surgeries to reconstruct her lower half including her bottom. Tomorrow she will have a procedure to determine if the rest of her surgeries can be done here in Temple or if Baby Jocelyn will need to go out of state to a specialist to continue care. Please pray for this family. They are going through a lot and need prayer from some prayer warriors and I know Kaidyn has a lot that read this.

We're Still Going Strong

2009-12-13T02:31:00.004-06:00

Kaidyn is still growing weighing in at a whopping 2lb 6oz! She is now eating 21mL every 3 hours. She's growing fast. All of Kaidyn's cultures to see if her cheeks were infected came back negative so she was able to come off her antibiotics and get that IV out of her hand. She's much happier now. She has been doing better and is slowly beginning to adjust to life off the ventilator without steroids. Today Kaidyn got to put on real baby clothes, a preemie oneies. It is pretty big on her but she has plenty of time to grow into it. You know what means....WE GOTTA GET A CHRISTMAS OUTFIT!!! I am trying to get ready for a NICU Christmas. I decorated her space for Christmas by getting a Christmas blanket to put over her isolette. Keep the prayers coming!

And update on the Morris family:

They are doing good. Zach moved to the continuing care nursery which means they are just waiting for him to grow so he can go home. He is still having some heart rate drops. Because of this, he is still in the NICU. He is growing big weighing 6lb 12oz. Pray for Zach and his parents Shavone and Steven.

Small Backwards Step

2009-12-11T00:23:00.002-06:00

Today was a down day for baby Kaidyn. The tape that holds her cannula in her nose caused breakdown of the skin on her cheeks. Because of this, she had to get an IV and was put on antibiotics to make sure there is no infection. She is up on her oxygen need and roller coasters with her saturations through out the day. They did blood test and cultures of her skin to make sure there is no infection on her cheeks from the breakdown. We will get the results in a few days. It has just been hard for her with so much happening all at once. It makes it hard to pinpoint what exactly is going on. I guess really its the combination of everything. She is really doing her breathing all on her own with no help (the steroids have been helping her a lot) so her adjustment will take time. On a good note, she is still eating well and digesting well. Her food intake has increased to 19mL every 3 hours. The doctor is pleased with her progress despite the above and he is especially pleased with how well she is eating. She has lost a little weight, she was 1000g on Tuesday, 990 on Wednesday, and 980 today, which is 2lb 2.57oz. Not much weight loss but still a loss. It probably comes from the medicine they gave her to release fluid after her blood transfusion. She is feeling out so much and I finally notice that she is getting bigger. She is starting to have a personality (one of a DIVA!!!) and moving around so much more. I don't see her as sick anymore which is such a nice feeling. Now I am just waiting for the day we get to go home.

2009-12-09T17:34:00.000-06:00

Pictures and More

2009-12-09T17:10:00.003-06:00

Kaidyn is doing good, but she has had a tiring day today. After receiving her blood last night, she has had a lot of extra fluid in her body which makes it harder for her to breathe. Add that to the fact, they took her off her steroids, she has been having to do more work on her own, completely. They gave her medicine so she could release the excess fluid from her body but her breathing is still fast. The doctor says she is still doing good, it's all expected, and it will pass once she grows more and becomes stronger. Continue to pray for her little body. She is hanging in there and resting.

2 lb Party!!!

2009-12-09T01:32:00.002-06:00

Kaidyn weighs 2 lbs 3 oz!!! She is still doing good today however she had to get a blood transfusion. She was getting mad during her diaper change so they checked her blood count and it was low. Other than that she is still doing great. Pictures to come tomorrow! God bless!

From the Phone

2009-12-07T22:18:00.003-06:00

Sorry there hasn't been a post lately. The Internet has been down here at the house. Kaidyn has been going very well. She gave us a small scare this weekend but it was her equipment not her. She is growing and more alert as time passes. She now weighs 1 lb 15.9 oz. Almost 2 lbs! I just figured how to post from my phone. Gotta love the iPhone. That's all that has been happening here in Temple. Oh and we got no snow!

Little Miss Aggie!

2009-12-05T01:30:00.003-06:00

Kaidyn is getting so big! Well, filling out mostly. She is now 1 lb 14.1 oz. Growing so much. She is still doing very well. The doctor says we need to pray that she doesn't get any kind of infection. So, pray, pray, pray for no infections! She got her second bath today and I put baby lotion all over her. I love that baby smell. My little gift from God makes me so happy! Her Nana made her some clothes. They are so cute. I especially love her Aggie dress. Her favoriate Nurse Practitioner, E-Man, loved it as well :) Not really he likes that other team in that weird town :). She is progressing so well.

More Progress

2009-12-03T03:15:00.005-06:00

Kaidyn is being such a big girl! She is now eating 15mL and its increasing daily. She has switched to an almost big girl bed because she is able to keep her body temperature better. Also because of this she can now wear clothes. She has been doing amazing and I am just so proud of her. Its wonderful to hold her everyday and look at that cute face! She even smiles in her sleep now. I think she playing with her special angel Kaiya. I even asked her once and she smile real big! She still gaining weight. She had lost a few ounces and went to 1 lb 10 oz but is now back up to 1 lb 13 oz. She still has heart rate drops but as long as she keeps bring her heart rate back up on its own, shes ok. Apparently, we all have heart rate drops we just bring the heart rate back up. So she is doing great.

Today when you say your prayers for Kaidyn please include baby Zackariah Morris. I have met his parents here at the Ronald McDonald House and they are wonderful. They keep me company when I am here alone. He is doing good but he will be here a bit longer because he is having heart rate drops as well. He does require some stimulation to bring them back up. He will be here in the NICU until those stop. So please say a prayer for him and his family.

Weekend Update

2009-12-01T01:46:00.006-06:00

Kaidyn has been doing great! She got to do some Daddy Daughter time on Sunday. They both really enjoyed it. She has been progress very well. She is eating more and tolerating everything very well. She has had a few heart rate drops since she has been off her ventilator but they say that is normal. Its hard for her to multi task being so little so some times she forgets whats on her to do list, you know like breathe. But she quickly remembers and brings her heart rate right back up. She is such a cute little baby and its so fun to hold her and see her little personality come. Right now, its still mostly attitude, but there is a sweeter side that's coming. She just likes what she likes and right now that is to be held, kangaroo style, or on her tummy. Her nurses fight with her daily trying to get her to stay on her side. (Oh and the hat in the picture her nurse Shelly made it)

I posted previously about a baby that had emergency surgery on Saturday. I met the parents of this baby today. She is a twin and was born at 34 weeks. Her sister, Evelyn, is doing great but Jocelyn is not as healthy as her sister. She will have to undergo more surgeries during her stay in the NICU. Please pray for baby Jocelyn and her parents.

More Pictures of Kaidyn

2009-11-29T00:30:00.002-06:00

Rub-A-Dub-Dub Kaidyn's in a Tub!

2009-11-28T23:59:00.004-06:00

It was another awesome day in the NICU. It started off kinda slow though. There was an emergency in the NICU with another baby needing emergency surgery. The surgery had to be performed in the NICU. So, the NICU was shut down most of the day. I didn't get to see Kaidyn until her 5 o'clock hands on time. I got to hold her again after her temperature check and diaper change. This time for 3 hours. It was wonderful. She stayed nice and warm the entire time so she got to have her first bath! She did so well. She just laid back and relaxed like she was having a spa day or something. It is so awesome to be able to spend so much time with her.

Today Kaidyn and I ask that you say a prayer for all the babies in the NICU. We know that Kaidyn has a journey ahead of her but there are so many babies who do as well. I also want to ask that you all say a special prayer for a family I met while here. The Simmons family had a baby girl named Catherine in the NICU with spina bifida. Baby Catherine did not make it through her second surgery. Pray for their family as they grieve for their baby. I know it is a hard process, a never ending process it seems. So please keep the Simmons family in your prayers.

Be Blessed!

The Moment of TRUE Motherhood

2009-11-28T00:15:00.004-06:00

Today was the best day I have had ever. After 4 long weeks of waiting I finally got to hold my little girl. It was a moment and feeling like no other. I truly felt like a mom at that moment. Kaidyn tolerated our time very well. I actually held her for 2 hours! We did what is called Kangaroo Care. It is basically holding the baby skin to skin, letting your body heat keep them warm and enabling the baby to hear your heart beat. It was absolutely wonderful. Kaidyn also came off the CPAP machine and is on what is call a High Flow Canula. So we can see her face! We can also hear her cry, which is music to my ears (for now :) ) She is doing so well her oxygen need has decreased and her sats are looking great. Pray for her continual progress and that her lungs strengthen and she continues to breathe on her own. She is such a strong little girl. I am just so proud of her. I've been smiling from ear to ear!

So Much to be Thankful For

2009-11-26T23:13:00.005-06:00

Today was a GREAT day. I did make the decision to go home for the day and I am very glad I did. Had a great time with my family. So, I went to see Kaidyn early this morning before I left. She was doing great and even showed some more of her super baby strength. Her oxygen was down which was good and she looked like she would probably switch ventilators again. Sure enough, she was able to switch ventilators a little bit after I left. I was so excited. So I figured she would be on this ventilator for a few days. So imagine my surprise when I got the phone call that Kaidyn was ventilator free. Yes, you read it right. KAIDYN IS OFF THE VENTILATOR!!! I am just so excited and proud of her. We are just praising God for his wonderful blessings! She has been doing good breathing on her own. Her oxygen need has increased a little but she is still doing very well. This is so exciting! She is now on what they call a CPAP. It's basically like two big oxygen prongs in her nose that are connected by a bar. On both ends of the bar there are tubes that go up by her head, which are pinned on to a hat to keep it all on her face. Its looks really big because she is really small (although I have heard that her pictures make her look big). But we are still just really excited! Oh and Kaidyn is now a whopping... 1lb 13oz! God is good all the time!

Light a Light, Share a Night

2009-11-26T23:05:00.003-06:00

Just wanted to post from the Ronald McDonald House's (RMH) "Thanksmas" night. It was an annual event where the RMH celebrates the lighting of the house lights. The local TV station came out as well as people in the community to share in the event. People were able to sponsor a light and pay for a night for someone to stay at the house. It was great to see the people in the community come and show their support. The RMH has truly been a blessing for me and my family. Without it we would be spending tons on hotel rooms and gas.

Oh and there were some VERY special guest that came.... Can you say Ronald McDonald and Santa!!!

Weening...

2009-11-25T21:17:00.005-06:00

Kaidyn is doing good on the jet and they have started the weening process all over again. The steroids are doing their job. She's been taking to the weening overall very well. She is not roller coastering with her saturations anymore which is a very good thing, plus, less noise from the machines. Today Kaidyn scared her nurse. It was this nurse's first time having Kaidyn so she was not prepared for her fiestiness. During her hands on, Kaidyn decided she wanted to flip over (probably trying to get back on her tummy). I was washing my hands and I heard the nurse gasp and say "little lady!" I laughed. That's not the first time Kaidyn has surprised her nurse with her ability to move her little body. The nurse was very surprised. She said she had never ever seen a baby Kaidyn's size do that. Kaidyn is definitely an amazing little girl!

After a Rough Night, A Brighter Day Comes

2009-11-23T22:08:00.003-06:00

Last night Kaidyn had to be switched back to her previous ventilator ( jet ventilator). After being taken off her steroids on Saturday, she slowly started to require more oxygen and more help from her ventilator. Late last night her oxygen requirement quickly increased and she was not recovering very well after stimulation. The increase in oxygen was not helping her and she started turning blue so they had to quickly switch her ventilator. Once on the jet ventilator, she immediately started doing better. She is doing great today on the jet ventilator and her settings are being decreased already, mostly due to the fact she was put back on steroids. She is still eating good and is very active. Keep the prayers coming!

Saturday, Nov. 21, 2009

2009-11-21T23:00:00.006-06:00

Kaidyn in her usual position when getting her diaper changed

Kaidyn next to a preemie outfit

Kaidyn is still doing good. She did have another blood transfusion today which means another IV. Luckily the nurse didn't have to try for a vein too many times. She was taken off her steroids today, but the doctor said she will probably be put back on them next week so her lungs will be ready for her tube to come out next week. She has been so awake the past few days. She has opened her eyes more and tries to turn her head. She is already developing a personality... spoiled rotten :) ! The nurses love her and always talk about how cute she is and how she has her little attitude sometimes. She is becoming well know around the South Tower NICU. But that's my little Kaidyn!

The Plan For Next Week

2009-11-21T00:15:00.002-06:00

Kaidyn is still doing great. She moves so much more now and is gaining weight daily. She is now 1 lb 9 oz! I can't believe it! All of her cultures to check for infection have come back negative so she was taken off one of her antibiotics. She will be taken off the last in a day or two. She is still on the road to getting her tube removed. The doctor will stop her steroids for a few days and let her body recover from them and then start her back so that her lungs will be strong enough so she can breathe on her own. Next week he hopes to take the tube out. Other than that, Kaidyn is doing good and amazing her nurses daily with how active she is. Keep praying!

Nothing New

2009-11-19T22:39:00.002-06:00

Kaidyn is still doing good. She had a very tiring day. Since they are still trying to ween her off the ventilator they make several changes through out the day which tires her. But other than trying to make her do more on her own she is still doing good. She did go back on antibiotics to make sure she does not have an infection. Her cultures have not been positive but one was a little cloudy. And due to the fact that she gets the steroids and she is so small she would be able to fight off an infection well, so better safe than sorry. Continue to pray for her and that her lungs strengthen and her body strengthens everyday.

Not Today

2009-11-17T23:39:00.003-06:00

Kaidyn's Blood Pressure Cuff

Kaidyn's Face!

Kaidyn didn't get her breathing tube taken out today; bitter sweet. I want to have her tube taken out but on the other hand I don't want to rush her into something she is not ready for. She had another very good day. Not much to report. She did have an arterial line in her hand and her fingers got taped down at some point and time. So her pinky and ring finger have a slight bend. She will meet with the occupational therapist tomorrow to see how to fix that. Continue to pray for strong lungs for Kaidyn!

Tomorrow May be a Big Day

2009-11-16T21:46:00.003-06:00

So, Kaidyn is doing good today. She was fussy but still doing good. Nothing really to report on that. She did get taken off antibiotics today but that's the only change, oh and they went down a little on her ventilator settings. Which leads me to this... The doctor wants to take the breathing tube out tomorrow!!! OMG!!! I am excited and nervous. Many, many prayers that she can breathe on her own. I am just excited about seeing her face without tape and sticky stuff all on it. And I am sure, she will like to not have tape on her face and a tube in her lungs. I am just so excited. So, pray she can do it, that she will be a strong little girl and breathe all by herself.

Ditto

2009-11-16T00:09:00.002-06:00

Kaidyn is still doing good. She is more awake now, I even get a peek at both eyes sometimes (mostly when she's mad). She won't get weened over the next few days, but we are not rushing her. Keep praying that her lungs mature and start breathing off more CO2 so she can eventually get off the ventilator. Not rushing her, but I just can't wait to see her face. Plus it would decrease her risk of getting pneumonia again if she is off the ventilator. Thanks for your prayers and keep praying!

Still Doing Good

2009-11-14T21:46:00.005-06:00

Kaidyn is still doing good. She is still on the conventional ventilator. She won't been weened this weekend. Her CO2 levels are still high so they think she is still adjusting to the new ventilator. Other than that she is doing great. She is still moving around kicking her feet and tossing her hands, but Kaidyn does mean spirited.

We're Having a Great Day

2009-11-13T22:45:00.000-06:00

Kaidyn is doing great today. She was put on the conventional ventilator and is doing very well. They are working on weening her off of that ventilator so she can be ventilator free. Her head scan was great, no brain bleeds. They have increased the amount of food she is getting from .5 mL to 1.0 mL. So basically from one drop to two drops. It's days like today that make getting through this easier. Since she is in the process of being weened off the ventilator and getting food she is not getting her "happy calm down medicine", so she is feisty. All the nurses have commented that she was feisty before but now it's more so. She was trying to turn her head and crawl out of her isolette today. Well not really crawl out, she was pushing up with her legs and feet, pushing her forward. I guess that means she's feeling good. So, today was a very good day!

Out of the Valley and Back on Top

2009-11-12T22:06:00.000-06:00

Kaidyn is doing great! I guess she was telling us she needed steroids. We heard today that her PDA is officially closed! She has started receiving feeds again, and so far she has been digesting the milk well. She is requiring less oxygen and they have been able to decrease the settings of her ventilator. They are hoping that by tomorrow she can be put back on the conventional ventilator. I am just so proud of her! She is handling her hands on time much better. She still doesn't particularly like it, but she tolerates it and recovers faster than before.

Today I was reading a book I received from a mom who has been through the NICU roller coaster. This book, "The Work of Your Hand" was written by a christian NICU nurse. As I read a few chapters and the bible verses the book offers, I realized all the emotions I am feeling are common. This book speaks about being scared, the questions to God that run through your mind, the unfamiliar noises your hear that first day in the NICU. What stands out to me is the first chapter of the book, My child, the work of God's Hand. This chapter speaks about the initial thoughts and emotions you experience, one in particular, that of perfection. I had wondered why I didn't get the perfection every parent strives for when they find out they are pregnant. But this book made me realize that even though the method of Kaidyn's delivery wasn't "perfect" in the eyes of man, God doesn't ask for perfection. All God requires from me as a parent is to love my child; my child who is wonderfully made by God. Psalm 139: 13-14 says "For you created my inmost being; you knit me together in my mother's womb. I praise you because I am fearfully and wonderfully made." Even though Kaidyn is sick and has a journey ahead of her, I know that she is a blessing that is fearfully and wonderfully made by God.

A Better Day

2009-11-11T22:43:00.000-06:00

Kaidyn is doing so much better today. Even though I am sad she had to get the steroids, they are helping. They are starting to decrease her settings on the ventilator, she was able to be taken off both blood pressure medicines, and she is requiring less oxygen. So the steroids are definintley helping her. She had another heart scan today to check her PDA. We haven't gotten the results from the doctor, but the tech that did the scan said she didn't see a PDA. So lets hope she's right. All in all, Kaidyn has had a very good day.

Steroids

2009-11-11T10:17:00.000-06:00

So, Kaidyn is doing okay. She was still having trouble recovering after any stimulus so they made the decision last night to start her on steroids. Its a little sooner than we all wanted or had hoped but praying and trusting God that she won't have any side effects from it. Continue to pray that her little body strengthens.

Everything is Still the Same

2009-11-09T23:35:00.000-06:00

Kaidyn is still doing about the same. They are keeping her stable. There really isn't anything to update on. She didn't have any test today. She is sleeping comfortably in her house, well when we aren't doing her hands on. Pray that she stays stable so she doesn't have to be given steroids. She did some pretty bedding today.