Got Milk?

Okay, so I had to post this picture because I think it is too funny! Let's just say that Kate will be set for life : ) And that's not all. We had to get a deep freezer because we started to run out of room.

Love My Daddy - and my FOOD as well!!

So far, the feeding experience has gone pretty well over the last couple of days. As I mentioned in the last blog, we have taken Kate off the feeding tube and just been feeding her from the bottle. She has taken to it really well. In fact, yesterday she was up to 180 ml for the day whereas, she only took 65 ml on Monday. We do hook her back up to the feeding tube at night, so she can get more calories (and she sleeps through the night!!!). She is getting stronger and stronger considering the effects of her cleft pallet. The only obstacle we have run into is that she is only taking in 1/3 of what she should be getting for the day. Plus, we haven't been fortifying the breast milk, so she is getting less calories. We had a follow-up appointment with Kate's pediatrician today and she only gained 1 oz. since Friday, so that was a little frustrating. Anyway, we are going to start fortifying everything that we give her and see how that goes. With Kate's heart condition, it makes it more difficult to gain weight because her heart is working double time and therefore, expending more calories. We are hopeful that once she has the surgery that she will be able to grow at a steadier rate. We are looking forward to the weekend and are thinking about taking Kate to Fillmore for the first time. It's a good thing she likes to ride in the car. We'll see how it goes : ) We are starting to get more and more comfortable with her oxygen levels and have been using the monitor less and less. We hope to get her off the oxygen ASAP!!!

I'm 7 lbs.....WAHOO!!!

Kate had an appointment with the pediatrician on Friday. She is finally up to 7 lbs. Everything seems to be going great. We discussed feeding options and possibilities for getting Kate off the feeding tube. We decided that we would stop her feedings for 24 hours and just feed her solely from the bottle. We started that on Saturday morning . She did great and hasn't had any significant reflux yet. We kept her off the feeding tube all day today and has been taking higher quantities from the bottle. It is great because she is starting to associate drinking from the bottle to satisfying her hunger. She has never had that sensation because she has been on a continuous feeding. She still has a way to go to get up to full feedings, but this is a start. The main issue, however, is that she isn't refluxing. She will be seeing the pediatrician again on Tuesday to monitor her weight gain. We have just been feeding her straight breast milk without the fortifier, so we're hoping that she can sustain the weight gain.
We were able to get out and take a ride up to Park City on Saturday. It was a lot of fun. It was so exciting for Kate that she slept the entire trip.....oh well!

Kate's still a little small for her bouncer, so it's a little difficult to get the "bouncing" effect : )
We have so much to be grateful for. Kate is doing awesome. Today, she had her appointment with the Audiologist to have an extensive hearing test because she failed the first 2 tests. The first test was given August 15th and she had the 2nd test the day she left Primary's. This was very discouraging to us, as it is very common for babies with a cleft pallet to have temporary hearing loss due to fluid in the ear drum. However, Kate passed the test with flying colors. She is such a little trooper.
Kate is also doing great with her feeding. We have started to feed her more from the bottle and she is taking to it very well. We feed her 2 - 3 times a day from a special "Haberman" bottle. The great news is that she is getting a stronger suck, whereas before, we had to squeeze the milk and let her get used to a suck, swallow, breathe rhythm. Her reflux seems to be getting much better as we have been feeding her. Kate has been sleeping really well through the night. In fact, she slept for 7 hours last night. Yah!!!
Kate loves riding in the car. So, our big excitement for this weekend will be going for a long car drive. Our lives have definitely changed, but we wouldn't have it any other way!

We are a Happy Family

Kate Loves Kisses from Daddy

As you can see, Kate loves when her daddy is home and able to hang out. Kisses from daddy are the best.

Bath Time

Kate loves bath time, especially in her "ducky bath." Peyton's mom (Kate's friend from the hospital), gave her this bath tub and she LOVES it!!!

Uhhh...I think my headband may be a little big?!?!

It's been a couple days since we've updated Kate's blog and a lot has been going on. Tomorrow, Kate will be 2-months-old. We can't believe how fast time flies.
Yesterday, Kate had a follow-up appointment with her cardiologist at Primary's. Things went really well and she is now up to 6 lbs. 8 oz. The cardiologist is very encouraged at the rate Kate is gaining weight. We discussed a time frame for Kate's heart surgery and they are confident that she will be ready by 6 months. That surprised us a little, as we were originally looking around 9-12 months. So, that is what we are planning for now.
Today, we had our consult with the surgeon for Kate's Nissen surgery. As we discussed our options with him, the surgeon felt as though Kate is too small at this point to do the surgery. This put our minds at ease because we weren't 100% set on having this surgery in the first place. Right now the reflux is very manageable with medication, so we're just going to watch her and hopefully she will outgrow it. She continues to sleep well through the night...Wahoo!!! She is constantly keeping us on our toes and are so grateful for her.

Uh Oh.......

Yesterday was an eventful day for us. Kate's feeding tube came out, so we had to go up Primary's to have it put back in. Unfortunately, we had to go to the Emergency Room, but we were able to get right into Radiology. It wasn't a very fun experience for any of us, especially Kate. They had to strap her to a board so she wouldn't move. Luckily, the tube was inserted quickly and they were able to x-ray her to see if it was positioned in the right place. We were glad it went in right the first time. Kate was pretty worn out by the time we got home and she ended up sleeping through the night. Wahoo!!!
Since she has been growing so much, we upped her continuous feedings from 17 ml an hour to 18 ml. We also stopped giving her Reglan (for her refux), so we'll see how she does without that. She is making progress every day. She is starting to do naughty tricks though. She has learned how to grab a hold of her nasel canula and her feeding tube and pull on it, so we have to watch her like a hawk. It's so much fun having her home and watchin her grow!

Kate's Favorite Pastime

Kate's First Outing

Today, Kate is 8 weeks old. We are getting adjusted to having Kate home and we LOVE it! She is so much fun. It's been a learning experience getting used to all of her equipment, especially when her monitor goes off and 2:00 am!!! We visited the Pediatrician yesterday and everything went really well. Kate is now up to 6 lbs. 6 oz. which is GREAT. She seems to be gaining weight at a normal rate. Last night, Kate had her first outing. We took her for a walk around our neighborhood. She did really well and loved it. I think she likes being outside, especially after being indoors for the first 2 months of her life. Bryan and I make a great team!!
We did find out some unfortunate news though. We were scheduled for her Nissen on September 18th, however, we called to confirm the date and they had cancelled Kate's surgery because we haven't consulted with the surgeons (which we were unaware we needed to do). Anyway, the first time available for a consult will be either the 19th or 27th. In a way, it may be a good thing to let her grow and see if she can outgrow the reflux. Next week we have an appointment with the cardiology department at Primary Children's. We are going to be busy busy the next few weeks with lots of Dr. appointments.

Welcome Home

Well, the day finally arrived. Kate came home with us on Tuesday. It was such a great day, but we were both a little nervous. Her first ride in the car was great. In fact, she slept the whole way home. Kate has been doing good and has adjusted great!!! We are so happy for her to be home. The first night was a little crazy......she was up all night!!! That combined with the beeping sounds of the monitor....let's just say that we were both very exhausted the next day. But, she stayed awake all day Wednesday and slept the entire night. We finally feel like we are in a routine now. Kate came home on oxygen as well has an NJ tuber(feeding tube into her intestines). The doctors feel like it is too much of a risk sending her home with a feeding tube into her stomach as she still refluxes quite a bit. We are able to feed her a bottle twice a day, depending on how interested and awake she is. So far, she has done pretty good. Each feeding is only about 1/2 ouce, so it's not much at all. She seems to really take to it well.
As for now, Kate is scheduled to see her pediatrition tomorrow. It will be nice to start seeing just 1 doctor from here on out. Also, she hasn't been weighed since Monday, so it will be fun to see how much she has gained. It's amazing to see how much she changes from day to day. She is scheduled for her surgery on the 18th. We are still unsure if we are going to do the Nissen surgery (for reflux). We have had conflicting opinions from various doctors, so it is basically up to us and what we feel is the best for Kate. That is a hard position to be in, but we are praying every day that we will make the right choice. She will still have surgery to have the g-tube put in along with the prosthetic devise attached to her cleft pallet. It is so hard for a parent to see your child have to go through all of these trials at such an early part of life, but know that she is going to be blessed. She is such a little sweetheart and we are so blessed to have her. We have also been blessed with such awesome friends and family and appreciate all the phone calls, visits, meals, gifts and most of all PRAYERS.

Graduated to a Crib

Today was GREAT, Kate gained 40 g, she now weighs a little more than 6 lbs, and is a little over 19" long. She has changed so much since she was born it is incredible. Today Kate held her temp. up the entire day on her own, so she was put into a crib. The hospital is talking about her coming home on Tuesday, the 5th of Sept. This is also amazing news and we are really excited to finally get our little girl home, we just hope that everything goes as planned the next few days so she actually does come home. She still has many surgeries and doctor visits within the first few years of her life that are planned. She is coming home to gain weight and the hospital feels she is stable enough that with a few monitoring devices and training, that Marcae and I can handle her care just fine. We are excited but a little nervous as well. We will for sure have great pictures of that day and update the site with the news when she does come home.

Sleepy Sleepy Sleepy

Yesterday, Saturday the 2nd of Sept., Kate had her first MRI. To get the scan done she needed to be sedated so that she wouldn't move during about a thirty minute time period. This pic is the aftermath..... she is wiped out and it was pretty funny. She slept for several hours. Overall, it was a great day. She gained 20 g and didn't have any spells. The hospital staff did take the NG tube out (the feeding tube to her stomach). They felt she was still refluxing enough to warrant her coming home with an NJ tube, which feeds her intestines directly until she has a surgery, to help her feeding.

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!