Some Good News!!!

Yesterday we spent the WHOLE day in Grand Rapids. It was a long day but a lot of fun. We had 3 different appointments scattered over the course of the day with time left over to go to the museum and have lunch.

Our first appointment of the day was to the Cardiologist for Ms. Kaitlyn. It was a hassle free quick visit. No echo cardiogram this time. The doctor said she was doing great and we didn't have to go back for a YEAR! I have to tell you how crazy this all is. Her surgery was only 5 short months ago. Those first months of her life she was such a sick baby, and here we are such a short time later, her heart is repaired and she is as healthy and active as ever! It's truly amazing, seriously there are times when I think back and can't believe that was our "crazy" life this past fall!

With the rest of the morning free we headed to the Public Museum. I had never been to this museum we always went to the Children's museum. We had a blast. It was 3 stories high and had so much for the kids to see and do. I think the Bug exhibit and the Planetarium were the biggest hit among the boys. I have a lot of pictures to share and I'll do it soon on a separate post.

After the museum we headed to lunch, we were all starving, our morning had started very early. After lunch we headed to the Pediatric Opthamologist for a follow up appointment for Brady and Kaitlyn's first eye appointment. Both of the appointments went really well. We brace ourselves each time we head to the eye doctor. Brady has been wearing glasses since he was 2 1/2. It is very common for children with glasses to get their prescriptions changed often, its been every 6 months for Brady. Which gets quite expensive. I am happy to report that Brady didn't need new glasses this time. Yay!!!

Next up was Kaitlyn. In the last 6 weeks or so I had been noticing Kaitlyn's eyes crossing. We aren't new to estropia, this too is what Brady has, but I was so sad Kaitlyn was getting it so young. All I could think is how in the world do you keep glasses on a 9 month old baby face. (She's 9 months old today, Happy 9 months baby girl!) And rubber glasses, really, very practical, but not cute! No I'm not that vein, but on a baby her face would be lost behind those glasses, and having Down syndrome, it is clear she already has a disability, and I will spend my whole life trying to get people to see her and not the stereotype. Glasses would be just one more thing that people would see instead of the beautiful baby behind the frames.

So what did we find out...

Kaitlyn is somewhat farsighted and she too has intermittent estropia (crossing of the eyes some of the time). We can expect glasses in her future. How soon? We are not sure! He wants us to go back in 3 months.

This was the doctors explanation...

Due to Kaitlyn having Down syndrome, therefore low muscle tone, and having had heart surgery, developmentally she is somewhere in the 4-6 month old range verses her actual age of 9 months. So when deciding the plan of action he took that into account. It is "normal" for a 4-6 month old baby to still be working on developing the eye muscles that stabilize the eyes. So for now we wait. When we go back he is hoping to see some improvement, if not we will talk about options (glasses or patching of the eyes).

So for us it was a great day! We spent time as a family. Medically speaking the kids are doing great, and the day didn't cost us a small fortune! Awesome day!

Hope you enjoyed the pictures I snuck in the post. I will never miss an opportunity to share my beautiful kids with all the friends and family who come to read and SEE them.

One more quick update. My parents are coming this weekend for the week. My Mom is officially in remission and can't wait to get here and hug her grand babies. We are all so excited. She hasn't seen Kaitlyn since she was 5 weeks old. It will be a happy "extra special" Mother's Day for sure!

Kaitlyn's Eyes

I always knew there was a good possibility that Kaitlyn would develop Strabismus estropia, crossing of an eye(s).

My oldest Brady developed it, the crossing of his left eye, at age 2 years 9 months. At the time we were devastated, not only did we find out that he had SE but we also found out he was very farsighted. I was in denial. How could he be so farsighted and I didn't know. But the specialist was right, and after a few attempts at finding him the right eye glass prescription, which was quite costly, the crossing of Brady's eye became corrected (with his glasses on). It averages yearly that Brady needs new glasses. As he gets older he cooperates during his exams better and they get the prescription right on. As of now there isn't any reason to think Brady will need surgery to correct the problem, his glasses are working, and eventually (fingers crossed) he won't need his glasses for the SE and if he chooses he can wear contacts for the farsightedness.

Kaitlyn...

We were told that the average child has a 1:100 chance of developing SE. Once a child has a sibling with SE their chances are 1:20. SE is also common in children with Ds. Which brings us to little Kaitlyn. Due to Ds and having a sibling with SE we have been prepared for her to develop it. At her wellness check last month the doctor asked if I had seen any crossing and I hadn't. Sometimes you can look at a child with Down syndrome and it might appear their eyes are not evenly aligned, but due to the wide bridge in their nose, at times it can look this way.

Well over the last 2 weeks I've started noticing some crossing...ugh! I questioned it at first, but over the last days it has gotten really bad. I'm so sad!!! It is in both eyes and is quite frequent. I shouldn't be upset, I know with all the medical issues children can have it isn't a big deal. But today it feels like a BIG deal. Oh how I wish she could have been a little older, I would have settled for a toddler, but an INFANT!!!!!

Brady's glasses have always stayed on, we get him the cable temples, and he has always wanted to wear them. It is uncomfortable for his eye to cross, giving him double vision and headaches. As he has gotten older he really has been able to verbalize how it feels. I worry about Kaitlyn being so young (little), how will I keep glasses on her face, we can't even keep a head band, or bow in. I've read up on it some on the Internet, I shouldn't be self diagnosing I know, but with Brady I feel pretty confident. It said online that SE in infancy often requires surgery...ugh! We will see what the doctor has to say......

Has any one had any problems with their babies eyes? What glasses did you choose? Any advice?

An All Around Update

On a day to day basis things have been pretty quiet around here, but when you look at the last weeks all put together I think I have come up with enough for a post. So here are a few updates...

My Mom...

Back in November my Mom was diagnosed with Bone Lymphoma. The cancer was pretty aggressive, when they found it it was already in both thighs and her ribs. She began chemotherapy right away. The plan for treatment was 6- 3 week rounds of chemo. The doctor seemed confident that she could "kill" the cancer but said she had to treat it aggressively, and that she did. My Mom is half way done. The chemo has been tough to say the least, she's been hospitalized twice, and the doctor has scaled back on the strength of her treatments each time. My Mom is a petite lady, they could only give her as much as her body could handle. After the third treatment it was decided that they would give her a break and let her regain some of her strength and some of the weight she's lost. This ended up being just what she needed. She was able to put on some weight, get her appetite back, and start feeling better. She went this morning to start her 4th treatment. Last week during her "break" she had a PET scan done to look for the cancer. And with a huge "sigh" I can tell you she had a clean scan, no cancer seen! Thank God! All the horror of the last months is paying off. Thank you to everyone for all your prayers! They worked for Kaitlyn and now they are working for my Mom. She will continue her treatments, but as of now things look good!

Brady and Bryce...

Brady is our 5 year old. The two boys are the best of friends but are polar opposites of each other. Brady is sensitive, shy and quiet in public, but at home he keeps us in stitches. His new found sense of humor is something else. He is so goofy. He's bossy at home and SHY at school. For some reason he really has a hard time opening up at school. It is so hard to watch. We try so hard to give him the tools (words) to be more CONFIDENT! But none the less...he loves school! He is a bright little boy, he learns everything they teach him and more. He's writing sentences, and starting to read, he's way above where he needs to be academically. We are very proud of him, but at the same time sad that he lacks confidence with his peers. His teacher reassures us he is making progress. His shyness baffles us because at home and around friends and family he's so different. He is such a comedian, and is working on becoming a magician, and he LOVES to draw and write. It is so fun to watch him grow into this next stage of boyhood. I love this little man.

Bryce is our 3 almost 4 year old. He and his brother are 16 months apart. He goes to preschool two mornings a week. We both needed this this year. It seems to be just what he needs. He enjoys being with me on his off days and misses his brother terribly when he's at school. Bryce is so different then Brady, they compliment each other well. Bryce is outgoing, silly, but emotional. When I say emotional I say it in all sense of the word. You never have to guess what he is feeling. He's a lover, Mommy's little boy. He tends to be the patient child, but also gets grumpy, angry, frustrated, and he speaks his mind :) This is his best and worst quality. He has grown up so much in the last months. He too is hilarious. He loves music, dancing, and his guitar! He's become quite the entertainer. What melts my heart the most though is the special spot in his heart he has for his baby sister. He's had this since the day she came home. The two of them are going to have something special. He is able to make her smile like no other! I love that little boy.

Kaitlyn...

Can you believe she is 6 months old already! The last months are such a blur. I watch her "Heart Story" movie that I made and lived and feel like I'm watching someone elses life. It is so crazy. The scar on her chest fades daily, she's doing great!

At her last wellness check she weighed in at 13lbs 10ozs. She is gaining and growing wonderfully. She still seems like such a little peanut though. After surgery we learned that she was aspirating. She had such a problem with projectile vomiting the weeks before surgery and chronic congestion. We had her scheduled for a swallow study before surgery but with her surgery date getting moved up it didn't get done until after surgery. The swallow study confirmed what I had thought, she was aspirating! Luckily it wasn't bad enough where we had to thicken any of her formula, instead we had to keep her on a very slow flow nipple and feed her sitting upright. Since surgery we had a follow up swallow study and she did much better. No more aspirating. She also had a 6 month hearing screen. It was recommended since hearing problems can be common in children with Down syndrome. She passed it fine, and we will follow up again at 12 months. Developmentally she is doing new things constantly and getting stronger by the day. An Occupational therapist comes to work with her every week. She is rolling some from her back to her belly, she is reaching and grasping at things. Her muscles in her core and legs have gotten so much stronger. We've started her on cereal and veggies. It took time and patience but she is learning to eat from a spoon. She loves dinner time! She makes each day so much better!

Baby #4...

I can't believe I am 16 weeks pregnant already. Having a busy household make the time fly for sure. Yesterday I had more blood taken for the second part of the sequential screen (We are testing for Trisomy 21 and 18). We should have the results Friday. Friday I am scheduled to have an amniocentesis, I go back and forth daily about whether or not I will have it done. I had the procedure done with Kaitlyn, I hate it, it doesn't hurt, its just my nerves, and the idea of the whole thing, if I want diagnostic results I need to have it done. We will see.

My morning sickness is almost gone. It creeps up on me from time to time. Right now my greatest problem is headaches. They say they should get better after the second trimester. I'm hoping! Other then that things are fine. Hopefully Friday we will get some reassuring news about the health of this baby and maybe even find out the gender. Thanks for following...stay tuned...

Kaitlyn's Heart Story In Pictures

A picture speaks a thousand words! Pause the music at the bottom before pushing play. I can't believe surgery was just 2 weeks ago, she's doing amazing!!1

Make photo slide shows at www.OneTrueMedia.com

We're Home!

I had good intentions of keeping everyone updated better. I started many posts but there never seemed to be enough time and when I came back to the computer what I had wrote had become old news. I will write more on Kaitlyn's courageous "heart" journey soon, but for now a quick update for all our loyal readers.

We are home, we came in last night. It all happened so fast. On Sunday we were told 5-7 more days and we left Wednesday. She is eating like a champ, Kaitlyn did all the hard work and earned us a ticket home!!! We snuck in and surprised everyone, it is great to be with the boys again. I have never missed anything or anyone quite as much as I missed them.

We have a lot to be thankful for this Thanksgiving! Happy Thanksgiving to everyone!!!!

This picture is from Monday! It was the first day that she started acting like herself. She started smiling again. Oh did I miss that smile! She is 100% tube free now. That feeding tube you see in the picture is history, she's eating great on her own!!!

In Christ Alone

Kaitlyn and Blair are sound asleep in the hotel room beside me. My sweet boys are back in Muskegon having peaceful dreams of super heroes and trucks and here I sit awake. How do you sleep on a night like tonight?

Tomorrow morning my sweet angel at just 3 months old will have open heart surgery. Just typing those words makes my chest tight and I have to remind myself to breath. She's my hero, the love of my life! I thank God for her each day! Tonight I'm struggling with a lot of internal turmoil and the ONLY thing that is getting me through is turning it all over to God.

In Christ alone I place my trust!

Today Katie had pre op all day. We arrived at 8:30. The morning started with a chest x-ray. That was uncomfortable to watch. She wasn't in any pain or discomfort though, she didn't seem to mind. I'll post a picture of that crazy contraption later, they had to strap her in sitting up to get a good picture. You would think with all the modern technology they could come up with a better way to get good x-rays. Next was a sedated echo. She took some oral medication and drifted off to sleep. They did a very thorough job, it lasted about an hour. Next we fed her and met with a Cardiologist where we talked more about her heart defect (AVSD) and surgery. The day ended with blood work. That was the worst part and the only time she felt pain. I was just about to ask for another phlebotomist when she finally got a vein. After that we went to our room and got settled. She was so happy tonight. Thank goodness she has know idea what the morning brings. I will write more tomorrow with surgery updates.

While your praying for Kaitlyn please say an extra prayer for my Mom tonight. This afternoon she was diagnosed with Lymphoma. I'm not quite sure why all this is happening like this. Mom, I'm sorry I couldn't be with you today. A girl is never to old to want their Mom, I sure wish you could be here. Kaitlyn will be better soon and we are going to help you fight this. I Love you!

We're on our way....

We are set to leave for Ann Arbor at 5am. I tucked the boys in and said goodnight and goodbye. It was sad, but I'm ready to get the ball rolling. I had a lot of anxiety today, I'm sure it will stick around for awhile. We will be in good hands though. I will be posting updates as often as possible. Pre surgery testing is all day tomorrow and the surgery is 7:30 Tuesday morning. Thank you everyone for your constant prayers!

A Horribly Amazing Day!

Today was quite a day. With Kaitlyn's surgery only days away the mood in the house has been, well...tense. We all seem to be wearing our emotions on our sleeves, even the boys. They have little idea what the next couple weeks will bring but clearly sense something is going on.

There is a lot to get done before Sunday. The biggest stress we've had is waiting for the official approval from the insurance company to allow Kaitlyn's surgery to be performed at the University of Michigan. We've been fighting this battle since we learned of her heart defect (complete AVSD) back in June. Surgery was scheduled last week. The doctors seemed confident the surgery would get covered but Blair and I remained less optimistic. We would believe it when we had an authorization number. The days have continued to come and go and no official authorization. Our family and friends have been rearranging there lives for this and all I could think is that our plans would fall apart at the last minute.

Tears of joy came this afternoon when we received the phone call that she is 100% approved. I literally felt weight being lifted from my shoulders. The fight was soooo stressful, but we won the war. We fought for Kaitlyn and it payed off. Her surgery will be performed by an amazing surgeon, Dr. Richard Ohye, at one of the top pediatric cardiology hospitals in the nation. (sigh) God is good!

We will leave for Ann Arbor either Sunday evening or very early Monday morning. Her pre-surgery testing will begin Monday morning at 10am. She will get a chest x-ray, sedated echo, EKG, and blood work. We will meet with an anesthesiologist and a cardiologist. Tuesday morning the surgery is scheduled for 7:30 AM. Her surgery will last approximately 4 hours. She will then go to the PICU where she could be 3-5 days. Once the ventilator is removed and she is breathing well on her own she will get moved to the general care floor. Her estimated stay is 10 days give or take. All healthy adult visitors are welcome! Hospital policy due to H1N1 is no kids under 16. The hospital advised our family and friends to watch a video to help us prepare for surgery and Kaitlyn's recovery. If you plan on visiting take a peak at the video. Thanks again to everyone for all your continued prayers. I hope to keep updating through her surgery and recovery.

Click here for the link to watch the video

A Quick Update

My mom's surgery was today. She did well. She is already home. She's quite sore and has been instructed to take it easy (little walking) for the next few days. My sister is there so she will take good care of her. It can take up to two weeks plus for the pathology to come back. I don't do well with waiting.

Little Kaitlyn went to the doctor again today. We seem to be there a lot these days. She weighed in at her highest weight yet 10 lbs 14 oz. She's been playing the gain an ounce lose an ounce game all month. Maybe she can reach 11 lbs before surgery. The last two days she's had this crazy rash. I thought it was because of her low fever and the virus she's been fighting. The doctor said it looks like an allergic reaction to the amoxicillin she was on...lovely! Good thing there are several antibiotics to choose from since she can no longer take anything from the penicillin family...ugh! If its not one thing its another!

There's A Lot To Write About.....

A Sick Baby and Lots of Germs

Managing Kaitlyn's heart symptoms has become a full time job. Feeding her takes all day. She would much rather sleep. Four weeks ago before we saw any negative effects from her heart defect she was eating 24oz/24hrs. Over the last weeks it has decreased and she is only eating approx. 16oz/24hrs. On top of it all she has the "crud" that has been going around. Wednesday we went in for a chest x-ray to rule out pneumonia. That came back good but they did see something "viral" on the x-ray. They tested her for RSV and that came back negative. But there is still something nasty going on and its kicking her buns. Which is making her even more tired and less hungry. Arghhhhhh!

To get her healthy and keep her healthy for surgery she will now rarely leave the house. Its impossible to keep her in a bubble but I'm going to try. We have two little boys at home who are constantly bringing home germs. Not to mention my husbands place of employment where there are 1000 + employees and inmates (he's an employee :)) Unfortunately Kaitlyn's visitors will be kept to a minimum and there will be hand sanitizer for all. I'm going extreme!

You would never know how sick she is by looking at these recent pictures. Here are some of her many beautiful faces...

We went to Detroit so we can go to Ann Arbor

This Thursday we went to DMC Children's Hospital in Detroit (ranked 27th in the nation) for a pre surgery consultation for Kaitlyn's upcoming heart surgery. We have been battling with our insurance company since before Kaitlyn was born because we want her surgery performed at MOTTS Hospital at the University of Michigan (4th in the nation), which is "out of network" according to Priority Health (PH). PH had dug their heels in and wouldn't budge until recently. A couple weeks ago we were told we would be granted a 2nd opinion consultation appointment at MOTTS. Finally a small step in the right direction. There only stipulation was that we visit DMC Children's Hospital first. Ugh!! We went to appease the insurance company. Long story short she had another echo and it was decided that they want to do surgery sooner then we had thought. They wanted to do it in November, I convinced them to wait until December. Surgery is scheduled for December 2nd!!!!!!!!!!!!

We have not given up on MOTTS. Hopefully we will have an appointment scheduled to go there by Monday. Time is running out but I'm convinced that what ever is meant to be will happen. I'm still sure that MOTTS in Ann Arbor is the right choice, and I will continue fighting as long as I can.

Kaitlyn getting her Echo cardiogram done on Thursday!
She sat nice and still!

I will write more soon about heart appointments and surgery plans. Please keep praying for Kaitlyn!

"Heart" Sick

Kaitlyn has a Complete AVSD. In a nutshell she has 2 holes in the septum of her heart and one large leaking common valve. Basically the oxygenated and unoxygenated blood all flow together. As complicated and serious as this is, it is the most common congenital heart defect in children with Down syndrome. She will require open heart surgery in the near future. Hopefully between 4-6 months of age.

We were told we would start to see symptoms of her heart defect, which unfortunately is the start of heart failure, between 8-10 weeks of age. Kaitlyn is 10 weeks old and her symptoms are here. About a week ago she started sleeping ALL the time, and rarely woke up wanting to eat. When she eats she gets tired quickly and stops. Its been a challenge. I've known since I was 27 weeks pregnant that she had this heart defect. I prepared myself, or so I thought, but honestly this is horrible to watch. She lost weight the last 2 weigh-ins at the doctor's office. Thank goodness she packed on the pounds the first 2 months. She's on two medications to help her heart, digoxin and lasix. Last week they increased her lasix and that has seemed to help some. We also started increasing the calories in each bottle to help her maintain her weight and hopefully gain again. I am anxious for her surgery. Hopefully she can still get bigger and stronger beforehand. The success rate is very high for this surgery! I've read many stories about kiddos with this heart defect and they instantly become stronger after the surgery. Please pray for Kaitlyn. She is a strong little girl with a bumpy road ahead. God has a special plan for this beautiful little girl.