Saturday, February 27, 2010

First Week Home

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.

Saturday, February 20, 2010

113 Days Later

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!

Thursday, February 18, 2010

Overnight Stay

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.

Wednesday, February 17, 2010

It's My Due Date!!!

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.

Wednesday, February 10, 2010

Grand Tour of the NICU

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.

Friday, February 5, 2010

Not Much Has Changed

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.

Tuesday, February 2, 2010

Not So Good Days

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.