Still in Michigan

We are still hanging out in Michigan and will most likely be here another day or two. Mason has had discharge orders since Friday but neither Amy or I have felt comfortable letting the hospital discharge Mason yet. If we lived in town it would be a different story, but when you are a 1,000 miles from home you don't want to leave town until you are more than ready. Then he got a little dehydrated so it is a good thing we stuck around so they could give him some fluids by IV. Even when he does get discharged we will probably stick around Ann Arbor an extra day to make sure he is ready for the ride home. Unfortunately we learned our lesson last time and were forced to travel straight home without getting any rest. We were literally 7 hours from Ann Arbor and 7 hours from Wichita in a town called Effingham, Illinois when he started having some issues. I would rather forget that experience.

We still don't have any photos of him post surgery but once we do we will post them for you to see. He just now, today, started looking and acting like his old self. In the meantime we will share some of the photos we took from our trip to see Mason's HLHS friend Jillian and her family. The visit was filled full of bonding, great Mexican food, a vicious dog attack, and a trip to Lake St. Claire. You can actually see and smell Canada from the US side of Lake St. Claire. I am now 1% Canadian from my brief time on the Lake (true story).

Two HLHS babies doing what HLHS babies do, hanging out on the beach.



This time up close. Just think, chances are there were no other pairs of HLHS babies hanging out on a beach (any beach) that day. Rare stuff.



Mia and her friend Julia playing.



This goes without saying: just another day for two great looking guys.



Behind Mason is all things Canada.

Surgery Day (Updated!)

Mason's surgery went as expected and he is resting just fine this evening. We got to see him for the first time around noon I believe - trust me Amy will correct me on that - and about 15 minutes after that he was in Mom's arms and has been there pretty much ever since. I held him for roughly an hour around 4 o'clock but before and after that he wouldn't let Amy put him down. When Mia and I left the hospital around 8:30 tonight he was still in Mom's arms. Although Amy texted me shortly after we left to let me know he let her put him down...so at least she got to eat the yogurt I brought her up from the cafeteria.

There is a chance he could be discharged on Thursday....BUT....there is still a lot we have to learn about the G/J tube and when they started feeding him tonight for the first time they did so using a new, higher calorie formula. I'm a little concerned he may have issues with that given how sensitive he was to us introducing new formula's at home. I wished they would have started him back out on his old formula and then let us slowly introduce new things at home. I guess we'll see what happens. What do mom and dad know!

Thanks to all of those who kept Mason in their thoughts and prayers today. It was a fairly 'simple' procedure compared to the heart surgeries Mason has been through, however, as we HLHS parents know anything can happen at anytime. Let's hope for a quick recovery, discharge, and no complications. As soon as we get some pictures of the little guy without a NG tube taped to his face, we will post them. We'll keep you updated.

Consultation Day

The consultation went well today. The doctor decided that Mason needs a G/J-Tube. In non-medical terms, that means that they will surgically place a tube through Mason's tummy into his stomach (G-tube) and it will continue down into his intestine (J-tube). We were also wondering if Mason would need an additional stomach surgery called a fundoplication. He actually said that children with HLHS, in his experience, do not do well with the fundoplication. That tidbit of information was worth the 1,000 mile drive as the Wichita surgeon was heading down that path. The G/J-tube will allow us to feed Mason into either his stomach or intestine. This will be beneficial when he is having stomach issues and throwing up a lot. I think the doctor and staff were shocked and somewhat amused (I swear I saw a smile on his face) when we said that we were feeding Mason every 90 minutes 24 hours a day. His exact words were, "how did you come up with that schedule?" When we told him that Mason had not gained any weight from March to June until we switched to this schedule and Mason had gained over a pound in two weeks, he quickly understand why Randy and I have been sacraficing sleep in order for Mason to get the nutrition that he needs. So, they are working us in on Wednesday. We are not sure what time yet. They are suppose to be calling tomorrow to let us know.

So, tomorrow we have a free day before Mason goes into surgery. We have big plans. Mason gets to see his girlfriend, Jillian. She also has HLHS and the two of them shared a room in ICU for almost 2 months. We miss her family and can't wait to spend the day with them. I am expecting more pictures tomorrow!

Speaking of pictures, here are some from this trip so far.

Here is Mia on the pier at Lake Michigan. The lighthouse in the background was really neat!

Mia first time at the beach! She loved it! It was a good surprise to stay at such a nice place and it was on 80 degrees! Beautiful!

Daddy and Mason waited on the pier while Mia and I ventured into the water.

After Mason's consultation today, Mia only had one place that she wanted to go - the 8th floor! This is the family resource center and it is on the top floor of the children's hospital and has a great view of Ann Arbor. It also has a great rooftop playground. Here is Mia striking a pose on her favorite toy!

I'm not sure who had more fun on the playground! Just two kids enjoying the zip-line!

After we left the hospital and had a nap, we had a late lunch and then went to the mall. Mia had a great time on this bungee/tampoline ride in the mall. She got so high at times that we were afraid she was going to hit the lights in the ceiling! She is already asking if she can do it again tomorrow.

We made it!

After 15 or 16 hours on the road we are finally here. We stayed in St. Joseph, Michigan Saturday night before finishing the trip out on Sunday. Making it across the Michigan state line was a small victory on Saturday with both kids in the car. Actually both did really well. Mia did a great job entertaining her brother. Mason hit his limit though around St. Joseph so it was the right time for all of us to stop. We had no idea where we were going to stay but then we decided to stay somewhere along Lake Michigan so the kids could see the lake and step foot on a beach (something Mia has always wanted to do). We couldn't have picked a better spot. St. Joseph is right on the water. It was one of those places that makes you think: "Why do I live in the middle of nowhere?" Oh yeah it's called jobs, family, KU basketball, etc....the important things.

Our first consultation is first thing Monday morning. It's with one of the pediatric surgeons here at U of M. We won't know what the next week or two holds for us until after that initial consultation. They may want to do another consultation/exam or two before doing any kind of surgery. Hopefully a g-tube is all he needs and whatever surgery he has goes smoothly. We really want to get that tube out of his throat so he will be more inclined to eat and grow. It would also be nice to see him with out a feeding tube taped to his face. He's had that thing on his face pretty much since his first week of life. What's interesting is that following his 2nd heart surgery one of the doctors up here told us in passing, out of the blue, if you are going to do anything else the best time is between the 2nd and 3rd heart surgery. So hopefully now is the right time.

Well tomorrow will be interesting. On top of the appointment we told Mia we would take her up to the family resource center on the 8th floor of Motts so she can play. She hasn't forgotten that place one bit. We'll add some pictures later. We'll keep you updated as well.

On our way to U of M

Today starts our trip to Michigan for Mason's G-tube surgery. Randy and I decided that we would try to break up the trip a little so we are attempting to leave tonight as soon as we got off of work. We plan to stay at Granny's house tonight. Mia is very excited about this. I don't think she realizes that we will only be there long enough to sleep and then on the road again. Yes, the whole family is coming on this trip. Mia was given the option of staying at Granny's or going to Michigan. I was shocked to here that she wanted to go with us. She said that she wanted to go to the 8th floor. This is the Family Resource Center at the hospital that includes an outdoor playground from the top of the building. It is amazing! I think she is also interested in seeing her favorite nurse, Sarah, again. If you remember, this is the nurse that she named her life-size Barbie doll after. Well, it is 4 am and I must get Mason's food going and lots of things to do before we can leave. Seems like I leave everything for the last minute but I'm not sure when I would have time to get it done sooner. We will update you all when we get to Michigan. Please keep Mason in your thoughts and prayers for an uneventful surgery and an easy recovery so that we can come home quickly.

Amy

Mason's First Haircut

Mason's hair has gotten so long. Mommy has been asking Daddy to get it cut for at least 3 months now. Daddy finally agreed. He looks like such a big boy now! I was so worried that he would not react well to the haircut but, as always, Mason never ceases to amaze me. He did wonderful. My hairdresser, Audrey, was so nice to come to our house to cut Mason's hair. I figured that Mason would be extremely intimidated at the hair salon. So, we set him in the high chair and turned on the Mickey Mouse Clubhouse DVD and he sat still and smiled for most of the time. He did give Audrey a few "looks" when she would spray his hair to wet it but he did awesome! Here are some pictures of the big event. Thanks again, Audrey, for coming to the house!

BEFORE:

Happy little man!

DURING:

"What is this woman doing to me?"

"Doesn't everyone love Mickey Mouse as much as I do?"

"This episode is such a nail-biter!"

"That Goofy is so funny!"

AFTER:Such a big boy!

One Year Ago

This weekend marked the one year anniversary of the day we took Mason home from the hospital. It was exactly 3 months - exactly 13 weeks - from the day that Mason was admitted to U of M. What a crazy ride that was! Since there were never any beds on the general floor, we were discharged out of Moderate Care. I remember thinking that I had never actually cared for Mason throughout the night. This was going to be the first time we had spent a complete 24 hours with him by ourselves. I had no idea how many times he would wake up in the middle of the night and he was 3 months old. I had never laid beside him in a bed and snuggled. I was so scared but so excited. The next 2 days we spent driving home across 5 states and he did great in the car. A year ago seems like such a long time ago yet the memories of our 3 month stay at hotel Mott are very vivid. And Mason has grown so much since that day. One word comes to mind - WOW!

Tonight Mason fell asleep on the living room floor snuggling with his Panda. I don't know what it is about Panda bears but he loves them. During our last trip to Michigan, Daddy bought Mason a stuff Panda and he can't get enough of it! It is so cute to watch Mason's reaction when you say, "Where's Panda?" He gets so excited just looking around the room until he finds him. Once Mason gets his hands on him, Panda received a big bite on the nose. That must be Mason's way of showing affection because his sister has received the same reaction when she gets that close to Mason's face. And for a couple of days, the bite marks can be seen on her nose! Tonight when he fell asleep with Panda, I snapped a few pictures of my sweet little man and his buddy.

The First Blog.

This is now the new home of updates on Mason and his family. Hopefully, this will be more user-friendly for his parents to update.

Mason has had many developments since his last surgery in March. He is crawling in his own Mason way. He is talking and can say Mama, Dada, Sissy, bye and ball among other words that we can't quite understand yet. He is currently getting his first set of molars - now if he would only learn how to use them for good instead of evil! By this I mean, if only he would use his teeth for eating instead of biting his sister. There has been on more the one occasion that Mason has left teeth marks on Mia's nose. We try to tell her to not get so close to his face but she keeps going back.

Mason is still 100% dependant on a feeding tube for his nutrition. During the last few months, we have tried to make some changes to Mason's feeding schedule and formula and he has not taken to them very well. So, after long debate we went back to his normal formula and made some tweaks to the amount of volume that he gets and how often we feed him. I think we have finally found the combination that works for Mason because he had not gained any weight since his surgery in March until the last few weeks. After two weeks on the new schedule, Mason gained over a pound! That is right - 1 pound 1 oz in two weeks - that brings him to a weight of 18 lbs and 13 oz. We go back in a couple of weeks to make sure that he is still gaining. We have also decided with the help of local doctors that Mason needs a G-tube. This is a tube that will go straight into his stomach rather than routing it through his nose. However, this will require another surgery for Mason which we have tried to avoid. We consulted with a local surgeon and when he spoke to the local anesthesiologists, they recommended that we go back to Ann Arbor, MI for the surgery. We were warned during our last trip to Michigan by the nurse practitioner that a lot of anesthesiologists will not touch children with HLHS due to their unique hearts. So, we have an appointment at Mott Children Hospital on July 26th to consult with the surgeons up there on what the best route is for Mason. We know that he needs the G-tube but there is a possibility that he will need an additional stomach surgery for reflux. We will let the doctors make that decision. It took a long time for us to come to terms with this but it is the best answer for Mason at this time. We will keep working with the Feeding Specialist to get Mason to eat by mouth and we are hopeful that removing the negative effects of the tube from his nose and running down the back of his throat will help him to make progress. Our trip will not only be to the hospital as we hope to be able to spend some time with our Michigan Heart friends, the Lentine's. We miss them terribly and can't wait to see the reunion of Mason and Jillian. They were roommates at Mott for some time and future prom dates!

Well, that is it for now. We are preparing to make our second trip back to Missouri today to visit my family. Mia will be spending the week with Granny and can't be more excited. She packed her own bag last night and it is bursting. I hope she realizes that she is only staying a week rather than the rest of the summer!