Looks like Daddy got to Kate's hair again!!!

Kate continues to have great days. She keeps gaining weight and we are so glad. Tonight she gained another 30 grams, so she is up to 5 lbs. 13 oz. They moved her feeding tube yesterday from her intestines to her stomach. By doing this, we want to see how she handles having substance in her stomach again. So far, she has done awesome. She keeps having minor reflux though. The great thing is that she is protecting her airway and preventing aspiration. Her sats stay up and that has been the main concern. It looks as though she will be coming home next week. We cannot wait. This is such great news because we thought Kate would stay in the NICU until her surgery. It's going to be a lot of work for a while. She will come home on oxygen as well as the feeding tube. It will definitely be an adjustment, but a huge blessing.
Bryan is finally getting used to being in school again. It's been hard for him to be at work all day and then school at nights. Luckily, it's only 2 nights a week. He really looks forward to the weekends where he can be with both Kate and I. He will be done with school in June and will graduate in August. It will be so nice for him to be done.

We may be going home!!! Yay!!!

We had some GREAT news today. Marcae spoke with the nurse practitioner today and came up with a plan for Kate to come home. Basically, she needs to maintain her temperature and gain some weight. They feel that she is well enough to come home until she has the Nissen Surgury. It's kind of a bitter sweet decision.....we are so excited for her to come home, but are scared to death :) She is still gaining weight fast and tonight she is now over 5lb 11oz. She seems to change and develop new characteristics almost every day. Mom and dad are constantly amazed at how long her hair is getting, even though she might be getting a bald spot :( Hopefully all will go well with her gaining weight and she will be over the weight the doctors would like her to be long before her scheduled surgery, so weight isn't an issue. The doctors give better chances of success the more she weighs.
Grandma Roper came to visit today. It's always fun to have visitors. In fact, Kate has met many people in her short 6-weeks in the hospital. We are so grateful for many good friends and family.

Big Girl Pants

Kate had another great day. She is able to bottle feed 2 times during the day and 1 time during the night. Marcae was able to feed her all three times and she took 2 full feedings. However, during her night feeding, she was too sleepy to finish. She only ate about 5 CC. She seems to keep her sats really high while she eats. In fact, her oxygen usually goes over 90%, which is awesome. She did reflux 1 time. Unfortunately, she is still showing signs of reflux, but we are staying hopeful that she will outgrow it.
Tonight was bath night. Kate is finally getting big enough to wear her "big girl pants." They're actually preemie capris that aunt Michelle gave Kate, but were still pretty big when she got them. It's fun to be able to watch her grow. When we weighed her tonight, she only gained 10 grams (just to give you an idea, there are about 33 grams per ounce). So, she didn't change much in her weight. She is still 5 lbs. 9 oz., but every gram counts :)
Today, 2 babies in Kate's room got to go home. It is getting us really anxious for her to come home too!!!

Daddy's Girl

Kate's most relaxed position

We do daily massaging and stretching with Kate. She definitely shows us when she has had enough!

Weekend Update

This picture was taken today. We call it her "grumpy pants" look : )

Kate has had a great couple of days. She continues to gain weight and is making progress on the bottle feeding. So far.....no reflux!! Wahoo!!! Grandpa and Grandma Roper came up yesterday and Grandpa and Bryan gave Kate a blessing. We are so grateful for the priesthood and the many blessings that Kate has had. She is a little fighter. Before we know it, she will be coming home. We have to laugh because she sleeps the majority of the day and is wide awake all night long. We are going to have a rude awakening when she comes home. However, there is no complaining whatsoever. We just need to reverse her crazy schedule :)
Kate currently has a tentative date for her stomach surgery on the 18th of Sept. We are hoping that if she continues to improve with taking feedings through a bottle, that her stomach will be able to take all of her food so she won't need to have the surgery in order to come home. Tonight she weighed in at 5 lbs. 9 oz. We notice that the more weight she gains, the more she progresses. We have made great friends with some of the other parents in Kate's room as well as the nurses. It's nice to be able to relate with others who are going through the same thing.

We love the bottle!!!

Kate continues making progress everyday, which we are so grateful for. Since she passed the swallow study on Tuesday, we are able to start feeding her from a bottle again. She was eating from a bottle the first week she was in the hospital. However, she was so small and weak that it was hard for her to protect her airway and therefore, she started aspirating. So, now we're trying it again. She did really well today. It's still a little foreign to her, but it will come. The good new is that she has not refluxed yet.......YEAH!!!
We spoke with the plastic surgeon today. Kate will be fitted in the next few days for the device to close up her pallet. Basically, the device will be tacked to the roof of her mouth acting as a retainer bringing the pallet closer together. Because she will have to be sedated, they are thinking that if she ends up having the to have the Nissn surgery (to fix the reflux) that they could just attached the device to her pallet at the same time. She won't need the main celft pallet surgery until she's about 1 year old.
Tonight, Kate gained another 40 grams. She is now up to 5 lbs. 7 1/2 oz. She's doing AWESOME!!!

Is that a wild hair-do or what??

Kate loves her Bathtime

Today was a great day. Kate went in for her 2nd upper GI test. This is an x-ray of her upper GI. She is fed a liquid dye which shows whether or not she is still refluxing. The first time she went in for this test, she struggled and ended up having 2 really severe A & B spells. It was quite a traumatic experience for all of us. Basically, the first test showed that she was not protecting her airway which caused her to aspirate into her lungs. From that point we had to stop feeding her from a bottle and through an NJ tube (a feeding tube that goes directly into her intestines).
The test today went really well. She was able to keep her oxygen levels and heart rate to normal preventing her from having any spells. Even though she still refluxed, she didn't aspirate. This means that she has gotten much stronger and is able to protect her airway. We were very pleased with the results. After talking with our nurse practitioner, she decided to allow us to start feeding Kate from a bottle and see how she does. We have a day tentatively scheduled for the Nissen surgery (to fix the acid reflux problem). So from now until September 18th, we will monitor her feedings and make sure she isn't refluxing at all. We are really praying that she will be able to outgrow the reflux, as surgery is our very last alternative.
The highlights of tonight were:

• Weight gain of 40 grams (just over 1 ounce) She is now up to 5 lbs. 6 oz.....wahoo!!
• Giving her a bath and Dad styling her hair
• Reading her a bedtime story

Look Ma - No Oxygen

This is one of the only pictures that we have of Kate with no tubes in her nose for feeding or Oxygen. She looks awesome doesn't she?? Kate's needs for oxygen go up and down, generally with how tired she is. In deep sleep she needs a little. When she is awake, she needs hardly any. Hopefully with the recent growth and exercises we are doing, she will become strong enough to need oxygen only in an emergency.

First Family Photo

This is the closet thing we have to a family photo : )

Technical Description of Kates Condition

Kate has a couple physical elements that can be operated on and are very common. Her heart problem is called Tetralogy of Fallot, where she has 4 distinct differences with her heart from a normal heart. Two are serious and need surgery, a partial blockage of her Pulmonary Valve and a hole between her left and right ventricle. Her second physical aliment is a Cleft Pallet, which is an opening in the roof of her mouth into her nasal cavity. This is a very common problem and the best part about it is that the cleft didn't protrude into her gum line or lip. She will be able to have surgery on this with the first year.
Since Kate has been in the hospital we have come to realize that she also has Acid Reflux which is bad enough that it may require surgery to stop the problem. This is a common surgery for those with Acid Reflux. However, she needs to be 5 lb. 10 oz. before the surgeons will consider doing the procedure. One of the effects of the reflux is that it can cause AB spells and aspiration, which can put stress on her heart. By having the surgery she will not be able to spit up, throw up or burp, preventing the stress on her heart. We are praying that she will outgrow the reflux.

Kates BIG BLOW OUT

Now don't let this gross you out, this is actually GREAT for her to do this. We have come to just appreciate the simple things in life, pooping and peeing are two simple things that are really important for Kate to be able to do correctly so she can come home. So here is a close and personal picture for all to see, ha ha ha.
This one went up the back, down the legs and pretty much everywhere. New Leads, sensors, and pretty much everything was needed, plus a nice bath for Kate.

Swallow test

Today was a great day for Kate. She took her second swallow test which basically watches through an X-ray, while she is eating, if she is taking the fluid into her lungs or her stomach. The first time she failed this test and was aspirating quite a bit, today she passed with flying colors much to the delight of mom and dad.
She is now up to a HEALTHY 5lb 5oz and is 19.5" long. 1lb 3 oz more than her birth weight and 4" longer. Tomorrow comes her second upper GI exam which watches refluxing. If she can pass this then there is a good chance we could be taking her home without any major proceedures being done. If not, the docs want to perform a surgery on her stomach that prevents her from spitting up. The reason this has become such a big deal for kate is because the reflux has been causing Brady spells, where her heart rate drops significantly and with her bad heart it stresses it out and she doesn't do well. So we are hoping that with her growth and development that she now can control the reflux and not have that problem. Keep your fingers crossed and your prayers coming. thanks

Kates Situation

Kate was born on the 15th of July, 2006. She weighed in a tiny 4lb 2 oz. Upon arrival, things turned hectic quickly as the pediatrician found her to have a heart murmur and she was unable to get the oxygen saturation levels in her blood to normal levels. We ended up at Primary Children's Medical Center within about 2 hours of her birth, being told initially that Kate had a Heart Murmur and needed to have an echo-cardiogram to tell the doctors more. This was a big surprise to us as Marcae had a very normal pregnancy. Five weeks later, Kate has made some great progress, but she's also had some setbacks along the way. Marcae spends her days with Kate, sometimes up to 10 hours. I tease her that she has "nurses hours." It brings us both great joy to spend time with her, reading and singing to her and helping her do her exercises. She doesn't really like them, but just the past couple of days that we started working with her, she has done really well. It's been so much fun watching her grow. In fact, she is starting to fill out her preemie clothes, which we thought would never happen :) But, she is getting much stronger and more alert. She is starting to focus and recognize sounds. She really loves to hear her daddy's voice.
Kate loves to take baths and we love giving her baths. Her dad loves to style her hair. Marcae told me that I am going to have to learn how to do pony tails and braid....ha ha ha!!! We are getting closer and closer each day for her to come home. We have been so blessed with this sweet little spirit. She has definitely changed our lives.

Pics of Kate

Just a few pics of Kate. these are not the most recent but these are some of the cutest. We will post more pics soon

First Blog for Kate

Aug 21st, 2006
Last night Kate weighed in at a health 5lb 3oz, a full pound and 1 oz bigger than her birth weight. She has been really putting on the weight just this last week, finally. She is now getting close to the weight she needed to be at for her proposed first surgery to fix her reflux which has been causing her to have AB spells which are not good for her heart. We are having a couple of tests done prior to her having surgery just to make sure that it is necessary, tomorrow she will have a swallow study done to see if she is still aspirating slightly and then on Weds she will have an Upper GI track X Ray to see if she is refluxing still. Our hopes are that she passes these tests and does not have to have the surgery and can come home to grow before she has the operation on her heart.
We will keep u posted on the results of the tests.
Bryan