Update

Well the PA for Dr. Hammel called me back late morning and said to just keep an eye on his stools. The blood did continue but might be getting lighter. We will keep praying for this to go away and no other complications. Blaise has been more fussy tonight, so hoping it's not going to be a long night.

Home sweet home

Well night one at home is in the books! We didn't do too bad. Everything got unloaded into the house and we successfully gave him his shot and Lasix last night. We've been tracking his feeds every three hours and according to the new scale gained again last night. We could use prayers right now for the blood in his stools to clear up. He hadn't had any more of this since our late night on Thursday, but right as we were changing his diaper to go yesterday it appeared again . They all discussed it and let us go anyway telling us to watch it closely. Well, his diapers had blood during the night, so about 12 hours after getting home I already made the first call back to childrens. We are waiting to hear back from them.

Heading Home- A Family of Three!

This is what we've been waiting for the last nine months! We are heading home!! The doctors came in this morning to tell us the good news. We will be heading out on Dodge in a few hours! Of course, the emotions are pretty high right now, as we've always hoped this day would come!

Blaise is our hero, the best child a parent could ask for! God has proven to us how wonderful he is!

Of course Mike and I are nervous and, I myself am a bit scared to death of being all on our own with him, but what new parent isn't nervous bringing home a new baby?!?  I guess, to us every new baby gets two shots a day and all sorts of additional meds, right?! We will plan on living each day to the fullest and enjoying every minute of our baby boy!

We are hoping to have enough room in the car to get all of his equipment home, and enough room in the house for Blaise to take over!

We ask for everyone to say additional thanks to God today and tonight for all he has done! We hope for Mike and I to stay calm and handle this new chapter in the book of life with joy and amazement.

We plan to keep updating frequently, as we work towards surgery number two!

Meeting Friends

As the talk of getting to go home gets a little stronger, Mike and I want to extend our most sincere thanks and gratitude by the overwhelming support we have received so far. We've learned so much through Blaise, and the reasoning why God placed him in our life, and one of those lessons is how amazing our friends and family and even strangers are. We've heard so many stories of the prayer chains Blaise is on, and of people praying for him across the United States. I'm pretty sure he has prayers in over half the states! Amazing how much one little person can touch so many people.

We would love to say thank you to each of you by giving you the chance to meet Blaise, but due to his highly fragile state this won't be entirely possible. The doctors have warned how life-threatening it will be if Blaise even gets a tiny bit sick. They have told us to not allow many visitors, absolutely nobody who even thinks they might be sick, etc. For the most part we will stay away from all restaurants, grocery stores, public areas with him as well. 

Once we are allowed to head home, we are asking for a week or two to get settled. Mike and I have always joked that since we have such a big deck with huge glass doors, maybe we will have visitors come over to hang out on our deck and we will hold Blaise up to the window from inside the house for people to meet. This might be how we handle things for a little bit. We will also have lots of hand sanitizer, Lysol and masks to cover faces for any house visitors. This will be a standard rule for ALL visitors, so we hope nobody feels offended by this.

We hope that everyone understands these additional steps we are taking to keep Blaise healthy and give him the greatest chances through his next surgery. After surgery number two, these risks decrease quite a bit and we can become a bit more lenient.

Once again, we offer all of our thanks and praise to our wonderful God and Savior. His healing powers have reached Blaise and we are eternally grateful. We can't wait to spread the good works of God throughout the years through Blaise. His story is one we are ready to tell a thousand times! He is a miracle, there is no doubt about it. We think the doctors and surgeons would even agree!!

Fun Facts About Blaise Andrew

It's another Saturday in the hospital. Luckily, a very uneventful Saturday. Besides routine vital checks, Mr. Blaise and mom dad really just hang out in his room. No other appointments or check ups today. The good news is that Blaise is turning into quite the little porker. On Friday he increased his cc intake quite a bit, and drank 60 a few times, and even had a snack of 30 in between a feeding in the middle of the night! This resulted in a much anticipated weight increase of 10 grams!!! YEA! Today he has been chugging right along, and as of his 2:00 feeding, is 30 cc ahead of this time yesterday. According to the cardiologist, they'll keep monitoring Blaise "a few more days." Since we've started off on the right direction, we know he'll keep on heading that way!

Since he hasn't gotten to meet anyone yet, here are some fun facts about Blaise.

1) He is named after Saint Blaisus, the healer of throats. We thought naming him after a Saint of Healing would be very appropriate. Andrew means warrior, or fighter. We also thought this had perfect meaning.

2) He has lots of very dark hair, but it actually has some light, highlighted tips, and his eyebrows are very light. They in fact look like they have a reddish tint, but dad refuses to think this.

3) You can tell exactly what he is thinking through his eyes. He has some pretty distinct looks of surprise and fear in his eyes.

4) He randomly scares himself all the time. He can be sound asleep and then jump and throw his hands straight in the air when he gets scared. This is really funny.

5) His hands have to be up by his face. He has been this way since the beginning, as he was like this in every ultrasound.

6) His two favorite things, that can console him at anytime, are his pacifier and being wrapped up tight in a receiving blanket. Do one of these two things, and he usually stops crying.

7) He can suck his pacifier like no body's business. He has been this way since the day he was born. Lots of the nurses have commented on how much he likes his pacifier.

8) He absolutely HATES getting his diaper changed. Of all the pokes and prods he has every day, getting his diaper changed makes him scream more than anything else. Mom and Dad usually tag team this, as the faster we get it done, the faster he calms down.

9) He is actually a very good baby. He rarely cries, or fusses. When he does cry, he pretty much goes all the way to screaming in an instant, and loves to hold his breath (and turn purple) when doing this.

10) He is for sure a nurse favorite. Several mornings when we get back, they have informed us that he spent the night being held at the nurses station. (Mom and Dad think this is great for the time being, but wonder what he'll be like at home in the middle of the night!)

We will try and think of some more to share with you~

Late Night

Well, it's kind of the same story around here. Blaise has been eating pretty good- mom and dad are very proud of how he is doing! The surgeon and cardiologist were also pretty happy with how he did on Wednesday. However, when he was weighed Thursday morning, he hadn't gained weight, but lost 5 grams. Blaise did really good again Thursday (in our eyes- he was always above 50% and did about 40 cc's each time). However, his weight this morning stayed the same- no increase. We will wait for doctors to round and see what they have to say about possibly putting feeding tube back in or not.

He is really such a sweet, loveable boy who has the best expressions. The hardest part is seeing him get upset when he is poked and prodded. You can see in his eyes every time he gets scared and it is the saddest thing. Many parents talk about how hard it is to see their kids get shots, and I would say watching him go through everything he has to is about 1,000 times worse. It's hard knowing he has no idea what is going on. He has vitals taken about 8 times a day, which he hates! His cry/scream is heartbreaking!

Wednesday night, when changing his diapers, Mike and I noticed a little bit of blood in his stool. The nurse had the doctor on the floor come look at it, and they decided it wasn't significant enough to worry about. Last night, at about 9 pm, Mike and I noticed blood again in his stool, and it was a bit more this time. They doctors decided to go ahead and schedule an x-ray, re-test his lovonox (blood thinner levels) and pulled him off all of his feeds for the time being. Blaise had a pretty terrible night, as he went through the xray where they have to take off all blankets, clothes, diapers and hold him down tight on a cold hard table. He screamed non-stop. Then we came back upstairs to have blood drawn (he had just had this done the day before too) and of course it took two pokes and tries to get enough blood for their use. Again, non-stop screaming right during his feeding time when we couldn't feed him. We were able to console him enough until the xray results came back, which did not show anything bad. They went ahead and let us feed him. We were able to get back to the Rainbow House about 1 am. This morning they said his Lovonox levels were also fine, so waiting to see what they think the problem was. We are thankful that God once again showered us with his love during our late night prayers that everything would be okay!

In other news, Blaise has been part of our lives for two weeks! So hard to believe and so hard to imagine life before without him! What an incredible gift from God!

It took dad about 10 tries to get this picture of  Blaise showing his muscles and smiling!

Blaise in his two-week birthday picture outfit!

After getting his bath!

Picture Update

After meeting with the feeding specialist yesterday, Blaise's feedings went much better! Dr. Hammel came to visit first thing this morning and decided it was time to pull the feeding tube, and let Blaise try out feeding all by himself. This was a big change for mom and dad, as we don't have to stick to the strict schedule that had lined up, and instead of tube feeding him whatever he doesn't eat, he only gets what he does actually eat. This is a little more stressful because he cannot get dehydrated with his heart, and in order to gain weight will need to keep taking in the 60 cc's.

So, today has been a trial run without the tube and hasn't gone too bad. He has taken over 35 cc's each time, which is better than 50 %, so the tube will stay out for now. We are praying that he continues to do good and eating, and gets back to that 60 cc level and also gains some weight. The cardiologists indicate that they will watch him for a few more days and determine how he is doing before sending him home.

In other news- today Blaise had an ECHO done, had blood drawn (they had to poke him twice) and had a second feeding class. He really didn't like the first two of these and screamed non-stop for almost an hour and half. It was a long morning! Mom and Dad learned how to use the scale we will be taking home, the pulse oximeter that will come home with us, how to use the car seat bed, and it got installed in mom's car.

Now for some new pictures!!!

Wire free!! Holding Blaise for the first time anywhere we want!

 

Mom holding Blaise hook-up free!

Demonstrating the new feeding holding position. On his side!

No feeding tube!! Just this big ol' thing on my arm, which holds one of my lines in place.