Saturday, November 28, 2009
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.
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!
Thursday, November 26, 2009
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!
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!!!
Wednesday, November 25, 2009
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!
Monday, November 23, 2009
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, November 21, 2009
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!
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!
Thursday, November 19, 2009
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.
Tuesday, November 17, 2009
Kaidyn's Blood Pressure Cuff
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!
Monday, November 16, 2009
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.
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!
Saturday, November 14, 2009
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.
Friday, November 13, 2009
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!
Thursday, November 12, 2009
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.
Wednesday, November 11, 2009
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.
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.
Monday, November 9, 2009
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.
Sunday, November 8, 2009
Today was definitely the bottom of the hill on this roller coaster ride. Kaidyn for sure has pneumonia so she will be on antibiotics for 7-10 days. Along with that comes x-rays daily to check the progress. She also started medicine for her heart murmur, or PDA as they call it. It is a three dose treatment and they will monitor how she responds. Her blood pressure is still not getting as high as they would like, so they added another medication. So much going on in such a tiny body.
We also had a small scare today when her stats started to drop considerably during her hands on. With all that is doing on inside her body she is telling us she wants to be left alone. She is having a hard time recovering after receiving hands on treatment. So it's all a catch 22 at times. She needs and wants to be left alone, but because she is sick and needs her diaper changed she is constantly having to be touched, repositioned, and suctioned.
Please continue to pray. Through all this, that is all any of us can do. When you pray, pray also for the many, many hands that touch her daily and those that make decisions on her treatment. Ask God to soften their touch and strengthen their minds.