Tuesday, May 15, 2018

Dusting this thing off

Well folks, here we are. I’m dusting off this ole blog as the time has come for the next step in Blaise’s heart journey. We’ve had six of the most remarkable, completely normal (as much as a half heart kid can be) years, with no medical concerns or complications. We are blessed. God for some reason, has shown us amazing grace, and a path so good, only He could have created it.

With that being said, our lives are about to completely change, specifically Blaise’s. For six years, we’ve gotten consistent reports at his six month cardio checkups. His echo images of his heart remain unchanged, his resting oxygen saturation’s haven’t dropped below 82. When I was originally diagnosed while pregnant with blaise, we were told to expect his third surgery around age two. Each year we’d go to his appointments, nervously waiting for them to tell us it was time for his third open heart surgery. Blaise defied the odds, making it to six without intervention. Traditionally, the Fontan surgery is performed in the summer months 1) to avoid the absolutely terrible and seriously life threatening flu season and 2) to avoid missing school. At our six month check up in March, it was decided that, while his basic reports were looking ok, we would do a stress test on Blaise to see where his oxygen saturation’s droppped to during exercize.

The 2nd of May, Blaise did his stress test. He did a great job, we couldn’t be more proud. He was of course super nervous, but for being six years old and having no idea what they were doing to him, if it would hurt, or what to expect he did totally awesome. I could go on and on about how amazing this kid is. Immediately, his oxygen saturations dropped into the 50’s. To put that into perspective, a normal child with saturations in the 70’s is put on oxygen and admitted to the hospital icu. At 50, organ damage occurs. Blaise lives every day of his life in the 50’s. Just walking into school causes this. 
It was no surprise due to these numbers, the day after the test our cardio Dr. Danford called wanting to schedule a heart cath surgery. These numbers are too low to have. Blaise has had two of these before: at 1 day old and at 3 months old. It’s common practice to schedule a heart cath followed a few weeks later by the Fontan surgery. Blaise’s heart cath surgery is scheduled for Thursday, June 7th at 8 a.m. at Children’s Omaha by Dr. Delaney who performed the first two. Deep breaths. It’s hard to even type that, hard to wrap our mind around putting Blaise through a potentially life-ending procedure when he “seems” perfectly normal to all of us. Super important information: we are NOT telling Blaise about any of this yet. He has literally no clue as we do NOT talk about it in front of him. PLEASE, if you run into one of us or Blaise don’t bring it up. We will tell him a day or two beforehand, because as we all know a six year old does not need to spend a month worrying and stressing and getting worked up over what is aboout to happen. 

Our current step one is to get through the heart cath. In comparison to his Fontan procedure, a heart cath should be a walk in the park. The risks and unknowns still remain and are in fact even more risky with someone with only half a heart. The goal of the heart cath is to use a microscopic camera and tool to get a better view of his heart then what we are seeing on the echo, and also measure the various pressures in his heart including the pressure between his heart and lungs. The current prayer request we have is that upon review of his heart cath the doctors, cardiologists and surgeons are able to decide that his heart is a candidate to receive the Fontan open heart procedure, which is what will prolong his life. If he is not a candidate, our only other option is heart transplant, which will be devastating. 
For the heart cath, the will enter his body through either his neck or groin to gain access to his heart. The heart cath procedure will last approx. 2 hours if no other interventions are needed (i.e. ballooning, stenting, coiling off collaterals etc). If he comes off intubation and anesthesia easily, he will need to lie still for two hours if neck access or 6 hours of groin access. Ideally, he would come home the same night. 
After review of the heart cath, we are pretty much 80% sure they will do the Fontan in July if he is a candidate.  We will not know their decision until a week after his cath, or a date of his Fontan surgery until that point either.  We are focusing on just the heart cath for now (or at least I, Erin, am). I’d be a complete basket case if I was focused on his Fontan surgery for the next two months. And, let’s be honest, I’m gonna need a dose of versed myself to get through these surgeries. 

I’ll post a bit about the Fontan Surgery, but will do more when we know it’s “official”.  Blaise was born without the right two chambers of his heart. Normal people have four.  This surgery is a palliative surgery, meaning it will not “fix” his heart but instead re-plumb it for blood to flow without needing four chambers. His heart will never be normal or fixed. This surgery will divert the blood from the interior vena cava and the superior vena cava to the pulmonary arteries without passing through the non-existent right ventricles. After completion, the blood most flow to the lungs without actually being pumped. There are several short-term complications, but the long-term ones are the scary ones. These include chylothorax (a type of pleural effusion), protein losing enteropathy (liver disease/fibrosis) and plastic bronchitis (branching casts of the airways). It is due to these common and deadly complications that Dr. Danford has chosen to wait so long before performing the Fontan surgery. Ideally, it would have been amazing to wait even longer to have this surgery. We will focus on what we hope is a positive successful surgery that will make Blaise feel better in the long-run. For his Fontan surgery, the will be cutting his chest and sternum open again for the third time. Hopefully the scar tissue is not too much to get through. We anticipate a minimum three week hospital stay. One of us will stay in the room with him, while we will also have a room at the Rainbow house. Sutton and Holten will be shuffled between grandparents and their sitter (second mom) Jessie. Hopefully we are not in the hospital for months, and Blaise will be able to start school in August. We are thankful that Erin has accumulated some days off work to use. Michael will truck as he can. 
We most definitely wish we didn’t have to ask for prayers, but we know from previous experience that prayers move mountains, and in Blaise’s case, have been so beneficial. We thank you all from the bottom of our hearts for the words of encouragement and thoughtful gestures. We appreciate it more than you know! Blaise has made quite a few friends and won over quite a few hearts in his six years!
On another note- if you plan on seeing us leading up to the surgeries, please make sure you are illness-free. We will also be using lots of sanitizer, etc.

Thursday, June 16, 2016

Surgery updates

849: update Blaise is back in the recovery room with us. His heart did great during surgery. He was very stable and oxygen saturations are ranging in the mid 80's which is great!! He's still very sleepy and out of it, so we will let him rest. We are beyond grateful to our wonderful friends family and communities for the prayers and support! This kiddo keeps showing us how incredible he is, and God's blessed us more than we can imagine!
740: update Praise the Lord! When the surgeon got in and put him under the serious issue requiring three hour surgery corrected itself when he was fully under and relaxed. They will not be performing surgery on this!!!!! So the simpler 1/2 hour surgery is all that's needed. He's doing good. Prayers work, miracles happen daily!
F7:00 am update We were up early at 445 and checked in by 530. Blaise was very nervous and scared. He watched Peterson farm brothers on iPad. They did give him some verses about 10 minutes before they took him and it's starting to kick in. He cried as they wheeled him away, but nurse came back to say he had quit. His nurse in operating room is named peg and her grandkids call her Mona peg just like Blaise does!!! Great sign!!!! We are waiting for first updates and will continue to update this blog post at the top. We know he's in God's hands and all will go fine!!! Thanks for the prayers!

Surgery updates

7:00 am update We were up early at 445 and checked in by 530. Blaise was very nervous and scared. He watched Peterson farm brothers on iPad. They did give him some verses about 10 minutes before they took him and it's starting to kick in. He cried as they wheeled him away, but nurse came back to say he had quit. His nurse in operating room is named peg and her grandkids call her Mona peg just like Blaise does!!! Great sign!!!! We are waiting for first updates and will continue to update this blog post at the top. We know he's in God's hands and all will go fine!!! Thanks for the prayers!

Friday, June 10, 2016

One week away!!


Hard to believe it's less than a week until Blaise's surgery. A quick update as to what's been happening. Sutton came down with a fever Sunday night and Monday and I immediately freaked out hoping Blaise wouldn't get it. Her temp was at 104 even on medicine. After squeezing in a quick stop at the pediatrician on Monday and an amox prescription, we headed to Omaha to get professional pics of the kids. I felt bad making a super sick Sutton go through it, but I really wanted pictures of Blaise before surgery. Luckily by Tuesday afternoon Sutton was back to normal and Blaise played in his first t ball game that night!! We are so proud of him he did great. This is the only game he'll get to do as he wont be able to after surgery. Wednesday night we ran to pediatrician for his pre-op apt. He weighed 31.6 lbs at 11% percentile and 40 inches I think 35%. He also did his preschool physical. He passed for surgery as long as he stays healthy. After his appointment Mike and I took both kids to the pool to squeeze in as much pool time before he can't swim for four weeks. Thursday night the kids and I went swimming again. Blaise has also been super timid in the water but is blowing bubbles and jumping in from the side. Sutton is unstoppable in the water and loves every second. 

We are currently in the car headed to Wichita Kansas for a wedding this weekend. We ask for continued prayers this weekend for great family time and continued health of Blaise leading up to surgery. We have pre checked in over the phone and have our room reserved at the rainbow house for Wednesday  night since we have to be at children's at 5:30 am Thursday. We also have our fetal echo Wednesday at children's so prayers for a healthy baby as well. 

Monday, May 23, 2016

It's Us Again- Upcoming Procedure

Well, its hard to believe it's been six months or longer since we've updated!! No news is good news, or in this case GREAT news!! We've been living a normal life, much like every other family. We couldn't be more blessed to seem normal on some days.

For a quick update: Blaise just finished 3 year old preschool this past week. He did wonderful for his first year. We couldn't be more proud, and the teacher says he's right where he should be for his age. Speaking of age, he turned 4 in April. He got a new bicycle that he loves riding and does excellent with. He is currently in Vacation Bible School, and will be doing some t-ball in June.
Sutton loves her big brother like crazy. She is talking a bit more and has the most wonderful personality. We love her like crazy. Our babysitter Jessie opened her own in home daycare in February so the kids have been going to her house now instead of ours. Oh, and our other big news is we are expecting a new baby the first of October! We just had our twenty week ultrasound, and right away saw a four chambered heart. We will still do a fetal echo at Children's in June to look closer at the heart.

Blaise's heart is still doing great PRAISE THE LORD!!!!! Seriously. God is GOOD. We've never doubted that. He is amazing and Blaise is amazing. We had a six month check up with his cardiologist in March and Dr. Danford said he was good to go for another six months. He said his echo looked the same as last time and his SATS were around 84 so no need to put him through a heart surgery at this point. We'd like to beef him up a little bit as he only weighs around 30. At an appointment last week he was 32!!! WOO HOO! Kids who weigh more do better with the next heart surgery. If all goes as planned, his next heart surgery will be next summer.

So, onto our more "nerve-wracking" part of the update, and the reason for me dusting off this ol' blog thing again! Since Blaise is now 4 and hopefully someday looks back at this blog when he is older, I'm going to be a bit "vague" with specific details on this but know close family and friends will know more. Blaise was unable to have a Urology procedure done when he was born, and this winter Michael and I pursued the path to maybe have this done. At our first meeting with Dr. Donovan the Urologist at Children's, he immediately asked us how long Blaise had been having another Urology issue that was a bit more substantial or important. We were blindsided as this had never been mentioned before. We decide to wait until this Spring and set up another appointment to see if anything had changed. Well, we just had our appointment last week and it was determined that nothing had changed and Blaise would need one Urology surgery, with the option of the non-necessary second Michael and I originally pursued. Blaise will absolutely have to been under the watch of cardiology anesthesiology at Omaha CHildnre's when going through these procedures. While out-patient on 'Normal" kids, for Blaise this is going to be quite serious. We will be putting a kid who functions on half a heart under anesthesia for a four hour procedure. We have no idea how his heart is going to react, but it has been approved by his cardiologist. We trust God and know he will keep a watchful eye on Blaise, the anesthesiologist and surgeon and get through this with flying colors and put it behind us. But it's going to be TOUGH!! We can do nothing but put our full trust in God. As his mom, I obviously can't think about it without crying (pregnancy hormones). We have a fun few weeks planned before his June 16 surgery at 7 am. We will keep this blog updated as the time nears and through surgery. We ask for your prayers, as we know prayers can do miracles!

Tuesday, October 27, 2015

May & June

May/June

The beginning o f May our family made a trip to Garden City Kansas to visit Mike’s Grandpa Glenn. It’s about an eight hour car trip, but the kids did absolutely fantastic!! Hardly any whining or complaining! We had such a wonderful time in Garden City. We loved being able to show the kids around their Great Grandpa and Grandma Peg’s hometown. We stayed in a hotel, which Blaise just loved. He slept in a king bed with us, and liked to roll around a lot! While we were in Garden, we spent a lot of time at GG’s house. We went out to the farm and Blaise got to ride in a tractor with Uncle Larry doing field work. We all went in the house that Grandma Peg grew up in. The kids just loved Kansas! One day, GG took us to the zoo, which was great. We also had supper at Uncle Larry and Aunt Cindy’s and Blaise got to make mud pies out in the driveway with his cousins. We did the hotel swimming pool, which Blaise was so excited for and talked about the whole way there. However, he hated it once we were in it. I think maybe because it was too cold. Sutton enjoyed it though. 

The beginning of May, we took Sutton to Children’s for a physical therapy evaluation since she was standing on her toes all of the time and not crawling. They actually said that her problem was her core strength. We started physical therapy appointments the beginning of May, and right away she started doing lots of things like pushing herself up to sitting and pulling her legs up under her. She also could roll everywhere. 

After we returned from Kansas, we spent a weekend in Treynorwhere we caught the flu. Blaise got it first and threw up in the car, and again at home that night. He was so miserable, and it was the first time he has really thrown up. Mike got it, and Sutton had slight symptoms.  While visiting Treynor, we got to spend a weekend with just Grandpa Craig and got to plant all weekend! Blaise loved riding in the planter, and Sutton even got to jump in too! Four people in the cab!! WHEW! 

We did a zoo weekend and Blaise is actually big enough now that he almost prefers running by himself through all the buildings. It still takes a stroller to get him from spot to spot because he gets so out of breath and tires easily, but once in the building he wants to be free to go! 

Sutton got her first tooth in May! She shortly later got a second tooth! She has the longest tongue, and loves to play with it. She can blow raspberrys, does lalalalalalal on repeat NON stop, can curl in and more. I’ll always remember her and the funny things she did with her tongue! 

We still struggle lots with Blaise and eating. He gags all the time when he eats. Sutton has taken over as the bigger eater at meal times. I typically end up spoon feeding him bite so that he gets enough to eat. One trick is letting him watch the ipad while eating. Some times that works.  On the other end, Sutton can’t eat enough. Put something- anything- in front of her and she will eat it. Such a relief to have a normal child in this department for once. I can’t believe how easy feeding a child can be, and how life doesn’t have He has an imaginary friend who is called “the bear.” When I can’t find something he always tells me maybe the bear took it. Always talking about the bear. I love this kid and his imagination. The bear will always be a memory from his childhood I won’t forget. These days Blaise can count to ten, does really good on his ABC’s, and is improving on colors. He likes to cut paper and make crafts. One of the things I love most about him is his love of singing. Grandma Donna sings him lots of songs and he is starting to remember the words to some and sings them back to us in his own version. His favorites are Peas Portage Hot, Old McDonald Had a Farm, Working on the Railroad. He also LOVES books. He would sit down anytime of the day and listen to a book be read to him. I LOVE THIS. 

Thank goodness we have the Johnson kids living next door to us. Talk about the best neighbors ever! Blaise adores them, and Sutton is starting to as well. I’ll be busy doing something and all of a sudden- boom Blaise has taken off sprinting outside or will disappear as soon as he sees them. It’s so fun being able to play outside! 

June brought some first in our household. Sutton is a crawling machine!! She crawls on all fours- hand and knees and goes fast! She really took of crawling from her physical therapy it really didn’t take her long to figure it out.  She also is the proud new owner of four teeth! It wasn’t too bad, but we got the teeth in without too much complaining. 

June also brought lots of swim dates at the pool. Both kids do pretty good in the water. Sutton loves to be in it and splash. Blaise loves to squirt his water gun. He does not like getting his hair wet or going in too deep. He does love love love going down the big water slide. He always goes down sitting on someones lap. 

Other activities in June included going to watch the boats in Tekamah at the lake with grandma Donna, going on the Ferris Wheel at Scheels in Omaha, and going to the Tekamah rodeo where Blaise got to participate in the boot race. Sutton loves all animals and screams at them non-stop. She had a poor time at the rodeo because we accidentally got bugspray in her eyes when we got there. 

Blaise did a week of Vacation Bible School in June. We weren’t sure how it would go since this was the first time ever being dropped off somewhere or doing something like this, but we thought it would be good practice for school this fall. He cried pretty much every morning and made his dad or Jessie stay with him for the first part. He only had one potty accident the first day, and was good after that. He participated in the program the last day and did good- he stood up there in front with all of the kids, and even though he didn’t sing or do much- every once and awhile he would clap or jump around. Best of all, he stood there and didn’t come running to us when he saw us. 

Sutton loves to eat everything in sight. I mean everything. If she think its food, sees food or hears a wrapper you better be giving her food. So different than Blaise. I say she could even eat a steak at this point because she can eat anything. She pulls herself up and stands next to stuff the end of June.  She does okay sleeping at night, usually needs to be given her paci a time or two. 

We went to the zoo in June with Uncle Ty. Blaise loved feeding the stingrays. We traveled to Des Moines to meet up with mom’s college roomates, who hadn’t seen each other in five years! We all stayed at the Adverntureland Inn in Des Moines and got to go to the Des Moines Science Center and swam. Blaise loved going down the froggy slide by himself. 

 

July:

We did quite a bit of swimming in July at the pool Blaise did some swim lessons and didn’t love them but did good. He does not want to jump in the water or put his face in, but he absolutely loves the slide and he loved the though of jumping in off the diving board after watching his cousin cooper do this. Both kids have gotten eaten a live by mosquitos this summer, and Sutton always tends to react and get totally swollen and they leave a mark on her for a long time. She has cut quite a few teeth and has 4. Still working on sleeping, she doesn’t do too bad, usually just shoving a paci back in her mouth does the trick. We’ve graduated totally away from bottles and formula and she just does sippy cups and whole milk. The transition wasn’t too bad and she was very smart right off the bat at drinking from soft and hard spouts,

Wednesday, July 22, 2015

Some Days

Are some days harder than others? Absolutely!

Love this sweet precious babe more than anything. And his sister too! Thankful  EVERY day!!!

God has blessed us over and over.