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.
























Saturday, May 30, 2015

MARCH AND APRIL

Since I'm falling so far behind with updates, I will wrap these two months into one. They obviously flew by, and we stayed busy and Mike was gone quite a bit. Overall updates include:
do just about everyt
Blaise:
- In March we went to see his cardiologist for his 9 month appointment. Blaise did absolutely wonderfully and charmed the socks of the drs and nurses. He wasn't scared of anything a single bit, and talked to everyone like a champ. We've decided he is in the running to be one of the kids on all of the children's hospital advertisements- it may have even been mentioned by one of his nurses! His saturations were at 82. I'd like to have seen them a little higher, but at least they weren't in the 70's. He was still small in weight at only 27 lbs. His echo looked unchanged- fantastic news! Dr. Danford decided that although most kids have the Fontan surgery done the summer after they turn 3, that because Blaise is still doing okay and they prefer kids to weigh 30 lbs before surgery (the success rate is much better when they are at that weight) that our goal is to wait until next summer. We go back in September to make sure everything is still going good. Blaise got the full clear to attend preschool in the fall with absolutely no restrictions! He can do everything and whatever he wants!

- Blaise loves to play outside. His favorite thing to do is "help" you. It really doesn't matter what it is. He HAS to do horse chores when at the farm. Help mow the yard, help cook supper, help dust etc. etc.

- He loves to sing- sometime he makes up the words and sometimes he gets quite a few words from a song right. He thinks "our songs' (mom dads and his favorites to sing on the radio) are Shake it Off and Uptown Funk. Although, when he sings Uptown Funk- the N doesn't always come out very clearly.

- He still has quite a few potty accidents during the day. Hoping we get here soon. He does great at night and wakes me up when he has to go in the middle of the night. He sleeps with quite the assortment of things in bed at night. I'm surprised there is any room for him.

- He goes to library time every Tuesday morning with Jess. Papa and monna Craig and Donna read to him on Facetime every night before bed and Blaise just absolutely loves it. He loves stories.

- He can count to ten, he gets good "runs" going on certain parts of the alphabet but still really struggles with his colors. He can point out the letter B and knows that what his name starts with. He will do preschool in the fall so hopefully this well help. 

- He is still an absolutely terrible eater. He gags on just about anything- and hates odd textures. I've learned quite a bit about his eating habits and do just about everything in my power to get calories in him at every meal. Prayers in this area are always welcome.

- Blaise turned Three on April 12th. He had a cowboy themed birthday party, complete with his pony GInger making the trip up so he could ride on him. Blaise loved his party, and loved opeining presents. We are so blessed each year to celebrate another year with him. I think we would give him the moon if we could! Instead, he got a new John Deere Gator to ride. One of our sweet neighbors also gave him a hand-down John Deere Tractor and wagon that's motorized. This kid loves to drive those things- but needs lots of adult supervision!!


Sutton

- Sutton weighs in around 18 lbs. She has struggled a bit with her body strength. She can roll but that's it. No crawling, etc. She stands on her tippy tippy toes and is unbalanced when she stands. More to come on this in May update.

- She does really well with baby food- much better than Blaise ever did! Such a relief! She is happy happy happy, and loves to scream/screech when she is excited. She does a pretty good job of this at church too!

- Her hair is really starting to grow-and goes over her ears. She loves her baths!!

- Towards the end of April she is finally starting to sleep better. She loves being outside as much as anyone. We've cut down and are doing about 3 bottles a day is all.

- She can say mamama and dadadada pretty well. She is very laid back and chill. She can also wave bye-bye pretty good. We are working on so-big and peek a boo!!

- She still HATES her car seat and screams bloody murder everytime we put her in it! Can't wait until she can move into antoher one.

She also loves ginger the horse and gets so excited to pet and ride him and screams.

- Her personality is just very sweet sweet sweet.

Easter-

The kids participated int he Easter Egg hunt here in Oakland at the nursing home. Blaise loved the easter bunny and did good searching for eggs.

We had Easter in Treynor and had an Easter Egg hunt at Grandpa and Grandma's where the Easter bunny brought lots of treats. We also had a hunt at Aunt Shelly's Blaise did really good at all of them and Sutton had a wonderful first easter.

Uncle Adams Wedding

Uncle Adam got married to Aunt Shelly in March and Blaise was the ring bearer. It was such a perfect fun night!! The kids did so great at it! Blaise wasn't so sure about going down the isle. He refused to wear the sports coat I bought him or carry his sign or pillow but he did walk down the isle!