Sunday, May 27, 2012

Some Firsts

Memorial Day weekend is upon us! We don't have many big plans, just enjoying each others company. The Zantax seems to be helping Blaise's reflux, so we will cross our fingers this keeps working. We are hoping he keeps up with his weight gain and reaches 9 lbs soon!

This is the first picture I've actually been able to catch Blaise smiling! I love his coo's and how much he talks to us. He is a happy baby!

On Thursday night, Dad came home after being gone since Tuesday morning. He had gone to Texas, and then Aberdeen to get Grandpa Stew's cows. Of course, we had to drive out to the Red Barn to welcome home both Dad and the cows. Blaise seemed to enjoy the trip and slept the entire time we were at the clinic, listening to the cows.

On Friday, Blaise finally got to meet his best buddy Landon in person! Landon is also from Oakland and has also undergone heart surgery by Dr. Hammel! I think they will be life-long friends and be able to share stories about their impressive chest scars! Landon's mom Kelli and I went for a walk and pushed the boys in the strollers. I've got a bit of work to do to get in shape and keep up with Kelli! Blaise slept the entire walk!

A little humor occurred on Friday night, although it wasn't humorous until looking back at it. Blaise and I had gone to bed, and Mike went over to the neighbors to hang out about 10 p.m. I woke up suddenly right before midnight after hearing some wind and knowing it was time for Blaise to eat. Mike hadn't come back yet. All of a sudden  the wind went crazy, and I could feel the house shaking from it. I grabbed Blaise as fast as I could and flew down the steps about the same time Mike flew in the house. All I could think was that there was a tornado headed our way. It was very scary and as the lights were flickering, I  yelled to Mike that we were going to the basement and made a beeline down the stairs. This is entertaining for the fact that in the two years we've lived in our house- I've never gone in the basement because I'm so scared of it!! I'm petrified of snakes, and have always thought their might be some down there. Afterwards, Mike couldn't stop laughing because I ran down the stairs carrying Blaise without thinking twice and was standing down there barefoot holding a flashlight! Thankfully our house didn't have significant damage. We ended up loosing power, but luckily got Blaise's bottle warmed up for his midnight feeding before it went out. . At three when we woke up again, the power was still out so Blaise got to enjoy two bottles given by flashlight!

Since we got the okay for tummy time, here is Blaise practicing! He is pretty strong and can pull his head up, which surprises us because he hasn't been given much chance to strengthen his neck yet!

Wednesday, May 23, 2012

Our Thanks

Michael, Blaise and I have expressed our thanks on other occasions, but we wanted to make a special post recognizing our extreme gratitude for each and every one of you. Beginning back in January when we first learned of Blaise's diagnosis we've been blessed by the outpouring of well-wishes, thoughts, prayers and generous gestures by family, friends and even strangers. Learning of Blaise's heart was of course overwhelming, and not something we ever thought possible. God provided us with such a great gift in Blaise. We've built a closer relationship with the Lord, and are shown on a daily basis the goodness and kindness of so many individuals. We feel lucky to get to experience this, and feel so lucky to be parents to such an incredible boy. We learn more about God's plan for us everyday, and have always felt peace and comfort in knowing God will always provide for us.

What amazing communities both Michael and I grew up in and live.It's indeed the power of the prayer from all of you that Blaise is doing so well. We thank you for continuing to pray for him every day.. We hope each of you is able to enjoy God's miracle of Blaise just as we are. As soon as he's able to meet people, we will have one of the biggest meet and greet Blaise party's!  The numerous gifts, monetary donations, gift cards and kind words have provided more than you can imagine. Often Mike and I look at each other in amazement and awe by how supportive people have been.

We also have to give special thanks to the Oakland Methodist Church, who have so graciously decided to provide us weekly home cooked meals through Blaise's next surgery in October. Our thanks go beyond words!

Quick Blaise update: He had a pediatrician appointment on Thursday and did great! They are happy with how he is gaining weight he is now 8 lb 8 oz. He still barley makes the "growth curve" but increased from 3 to 4% in weight and length. Not surprisingly, his head circumference is 11%! Definitely his daddy's kiddo!  Yesterday we had a cardiologist appointment at Children's.  Dr. Hammel gave the "looks good" comment, and also indicated that his shunt still has increased flow through it, so it will probably be more around the 6 month time frame for surgery, than 4 month. Carmen, his PA and our main contact relieved many of mom's stresses on every day care and gave the thumbs up for stroller walks. He can also have tummy time now, can eat "when he chooses" (as long as he keeps gaining weight) and his incision chest strips don't need to be replaced when they fall off anymore. He gave his favorite PA Brittany a huge smile and she told him it made her day!

We add two more meds to his "routine" eye drops for his clogged eye duct three times a day and Carmen prescribed Zantex for reflux twice a day. For those keeping track:
 7 a:  Lovonox shot and weight measurement
8 a    Lasix and Zantex
9 a    Eye drop
3 p    Eye drop
6 p    Zantex
7 p    Lovnox shot
8 p    Lasix and Vitamin D
9 p   SAT Reading and Eye Drop

I work out! Getting a double chin though!

Crazy hair after my bath! 
Hanging in my boppy for the first time!
Aunt Jenna came to visit, so of course I had to wear my Aunt Rocks shirt!

Tuesday, May 15, 2012

A Weekend for Celebrations!

Blaise turned one month old on Saturday, May 12th. For many, recognizing monthly birthday's isn't something they do but for us it was a pretty big milestone! We are so thankful for the blessings God has bestowed upon Blaise and for providing us 30 incredible days so far with him. We gave lots of thanks on Saturday for our baby boy! Of course, mom couldn't pass up the opportunity to sing Happy Birthday!  Below is a "Watch Him Grow" photo, which we will update each month.  I've also included a photo of him from right after his surgery when he was just 3 days old. It's definitely not an easy picture to look at, and I've tried to erase as much of this time from my memory as possible. I think comparing the two pictures just proves how great he is doing. It also shows how absolutely incredible, strong and what a fighter he is. A true Superman! It's hard to imagine such a little person, brand new to this world having to undergo such pain and suffering as soon as entering this world. It makes me appreciate even more the gift God gave us, by sending his only son and watching his pain and suffering on the cross to forgive our sins.

It's great to see how much he has grown from the photo in the hospital to the one month photo. Blaise now weights 7 pounds 14 ounces. He has been eating like a champ, but we are still dealing with a milk/soy protein intolerance. We are hoping this clears up soon!! He also sometimes to seem to think it's party time from about nine-midnight. He is an absolute cuddle-bug!

This weekend also was my first Mothers Day! I thank God everyday for making me a mother and allowing Michael and I to be his parents. We plan to do everything to raise him just as God would like us to.

We also ventured out of the house on our first walk and stroller ride! Mom just HAD to document the occassion, but I'm pretty sure the boys thought that she was a bit crazy!


A few new videos and photos are added below for your enjoyment!

Saturday, May 12, 2012

Our Own Way

Now that we've been home for two whole weeks, our routine is starting to feel more routine. However, I still feel like I haven't found much more time to accomplish anything! Of course, the favorite part of our day is snuggling and loving on Blaise- he is the best baby we could ask for! He is soo sweet, has the best expressions and just loves to be loved on! Of course, I never want to put him down, so we spend many hours just rocking in the chair.

Today is Blaise's one month birthday! He already had Happy Birthday sung to him this morning! :) These milestones have such a greater meaning to us! We will update with a second post on that later on.

Beyond all of the "typical" newborn care at home, Blaise also has quite a few unique things that we have to do. I'll highlight some below for those that are interested in the special care he recieves.

1) Feeding: Blaise wasn't allowed to breast feed, due to the excessive energy it takes to do so. His heart functions twice as hard as a normal humans, so for him it feels like he is continually running a marathon. Originally we were only to allow him to suck the bottle for twenty minutes, otherwise he would be burning more calories than he was taking in. In addition, that is why we were adding formula to the breast milk, to increase his calorie intake. Since he has taken off on bottle feeding, and has a very sensitive stomach, we've actually taken the formula out of his bottles now.

He is required to eat every three hours, even in the middle of the night and regardless if he is awake or not. We set alarms to make sure we get up. We measure out the mL he gets before each bottle, then when he is finished, we re-measure out what is left and track each amount in a book. We know the total intake amount for each day.

2) Positioning: Blaise cannot be elevated beyond thirty degrees. This is why he got a flat carseat from the hospital, a car bed. It remains installed in mom's car, so we have to carry him in and out to the car. he cannot use bouncy chairs or swings. No propping on boppy. This makes it difficult for mom to get anything done, since I can't leave him in one for entertainment. He also has to have a stroller that lays flat. He cannot have tummy time.

3) Exposure to People: He cannot be exposed to individuals, since we do not want him to get sick.

4) And the others I've already talked about including, daily weight recording, daily SAT recording, two Lovonox shots daily, two doses of Lasix daily, and a dose of Vitamin D. The reminder alarms go off quite frequently in our house :)

5) Crying: Because of his heart condition, we aren't allowed to let him cry for very long, and usually pick him up right away. YES- he will be spoiled :)

Last night, we had our first family outing besides going to doctors appointments. We loaded Blaise into the carseat and drove around Oakland. It was soooo nice to get out of the house! Then, we headed to West Point to the only drive through within 15 miles and got supper at McDonalds, that we ate in the car on the way back. I think this might become a familiar routine, since we can't take Blaise out anywhere. I joked that the outing was my Mother's Day dinner from the boys!  The trickier part was having to look online at McDonals nutritional information before leaving to see what I could order that didn't have milk or soy in it!

Thursday, May 10, 2012

All Is Well

Blaise's doctors appointment at Children's went well. The x-ray still looks good, and Dr. Hammel was happy with how Blaise looked. We will continue progressing towards the next surgery, and continue our cardiology appointments every two weeks. He was happy with how well he was eating, so Mike and I have decided to take out the fortified formula from his feeds to see if this helps his stomach.

As always, we live for each day and take in every moment to enjoy our sweet gift from God!

Monday, May 7, 2012

Showing Off

Here is a chance for our great blog followers and friends and family to see Blaise live in action! Hope you enjoy this video.  Tomorrow Blaise goes back to Children's for his first follow up appointment with the surgeon. He will undergo an asortment of tests again, many that he had on routine while in the hospital. It will be interesting to see how he handles them. We ask for lots of prayers as we begin the long-term health routine with Blaise. We pray that the tests all look positive, and his heart is still working as it's supposed to. We will give a full report after our appointment once we get the chance to update.

Below are videos of Blaise showing off! They are from today while he was playing on his mat. This gives everyone a chance to get to know his personality, since he is on "house arrest". 

Video of Blaise playing

 So tired!
Just another day taking my meds- I've gotten to be so good at this!

Saturday, May 5, 2012

Almost a Week at Home!

We have started to perfect our routine a little bit more. For the most part, his schedule is just like any newborn. He is required to eat every three hours, even if we have to wake him up and make him. He eats breastmilk, fortified with formula. Therefore, I am also pumping every three hours. Mike is pretty good about feeding as I'm pumping so that instead of this process lasting an hour every three hours, we've cut it to about a half hour. We mix the fortified milk about every three feedings. I can honestly say that I think I'll never want to hand wash a piece of plastic again in my life. Our counter is officially taken over with bottles, pump equipment, bottles and more. It feels like this has become our full time job- and our poor dry hands can prove it!

Blaise has really taken off, and is eating very good. On Thursday, he ate almost 600 cc's! We are still having problems with his digestion, however. His stools have cleared up a little bit but we still notice blood and he has quite a few loose stools as well. He also gets really uncomfortable and cries a lot after eating, so we think he gets tummy aches and has bad gas. We had our first pediatrician appointment on Thursday morning, and they indicated it might be lactose intolerance and suggested that I remove all lactose from my diet. I've been working on this, and hope it makes a big change in how Blaise feels.He currently weighs about 7 lbs. This is in the third percentile on the growth curve for average healthy babies. His SAT levels each night have been around the lower 80's, which is about right for him. The surgeon would like them between 75-85. All normal humans are at 100. As Blaise grows and these numbers lower, the surgeons will determine when the next surgery is. 

Blaise sleeps pretty good, and is usually awake a few hours a day. We have our first cardiologist/surgeon appointment back at Children's on Tuesday morning. So far, Blaise has done good in his car bed and his slept during our trip home and to his other doctor appointment.

Thanks for all the well-wishes, and continued prayers. Since Blaise is able to wear normal cloths now, its easy to "forget" about his heart  but we know prayers are needed as much during this time as any. 

Wednesday, May 2, 2012

Wordless Wednesday

Photos taken by Mom and Grandma Donna today. Special thanks to Grandma for all her help the last two days! Mike has been back trucking, so the extra help is appreciated.

Tuesday, May 1, 2012

We are really enjoying being home and getting our routine figured out. Thankfully Blaise is a very good baby! We had some pretty typical new baby experiences including mike getting spit up on all over his shirt, resulting in a midnight bath for Blaise when mom got peed on. After that Blaise slept really good the rest of the night! We've learned it will be a long time before we get a good night sleep as Blaise had to get fed every three hours whether or not he wakes up himself. Childrens nurse called us back and didn't seem to concerned with blood in stools, and will look at closer next week at our follow up appointment. I got my first experience flying solo this morning since mike went back to work. Grandma peg came over to help provide moral support during the shot. Grandma Donna came to visit for thx next two days and watched Blaise for a half hourwholee mom and dad got out of the house to run errands to the dump, bank and drug store. We are enjoying every minute! Thanks for all the prayers!