Friday, November 27, 2009

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!!!

Friday, November 20, 2009

I see you!

Kaitlyn had a few things going on today. Vent is still in, she developed 2 bacterial infections and has tons of chest secretions. They are suctioning her almost hourly. Doctors are anxious to get her off the vent. She has sprinted well (practice runs), but they are afraid her secretions will be unmanageable with out the vent tube to suction them out of. She had a blood transfusion today (she's anemic, and has had a few problems with her oxygen saturation), they thought the new blood would help with her oxygen levels and it has. Other then that it is a waiting game. She is waking up more, she opened her eyes today and really looked at us for the first time since surgery! She gets uncomfortable from time to time, they are weaning her off of her pain meds hoping that will help her come off the vent. Up until now she's been pretty snowed. Today was an okay day. It could have been worse. We are praying for an excellent day tomorrow.
We are getting a few visitors over the weekend, it will be a nice distraction having them here. I probably won't get to a computer until Monday, so look for an update then.
Thanks again to our amazing support team, and the many people who are praying for our brave little girl. See you Monday!

Thursday, November 19, 2009


It been a pretty eventful 24 hours for little Kaitlyn. Unfortunately we were not able to see her much yesterday. There is a very sick little boy in her area who needed a lot of stabilization and procedures done at his bed side. Eventhough we weren't allowed in a lot we knew she was in good hands.

Here's some of her most recent events:
  • Her heart rate dipped into the high 60's overnight, they had to temporarily put her on a pacemaker (ugh). They continue to have her attached to the pacemaker, not turned on, in the event her heart rate dips again.
  • Her lungs are wet, this is normal to a certain degree due to the excess fluid from the heart surgery, the fluid that doesn't make it out the drain weeps into her tissue and ends up in her lungs. Kaitlyn has more then they would like to see. There was talk of placing a chest tube in to drain the fluid off. They ordered an ultrasound and the fluid looked better, for now they just increased her diuretics, but will watch it close with more Xrays and ultrasounds.
  • Her catheter was removed today, one more thing out!
  • She started tube feeds this morning. She gets less then an ounce every few hours and they will increase it over time, she tolerated it well.
  • For some reason her right leg is cooler then her arms and left leg, they are watching it, they found a pulse in her leg though, they don't seem too worried.
  • They continue to sprint her (this is when they try to allow her to breath on her own with little to no help from the vent). She's doing OK. She isn't getting rid of as much carbon dioxide as she should. Again it is only 2 days after surgery so she is still within the normal range of where recovery should be.
  • Kaitlyn got moved from the pediatric cardio ICU to the normal pediatric ICU this morning. They needed her bed for a baby just out of surgery. I wasn't thrilled, I loved where we were at. All the nurses specifically worked on heart babies all the time, and all the doctors were constantly around. Her new nurse is great! It was just stressful watching them move her. She was the chosen baby because she was doing better then most. I guess that's a good thing, but to us this still seems so critical.

Keep the prayers coming! Thanks again for all the support!

The ball's in Kaitlyn's Court, stay strong sweet angel!
Pediatric ICU and PCTU, 5th floor MOTTS

Grandpa Skocelas came to spend the morning with his grand baby today. He's been all over the state this week driving back and forth so he can be with the boys and Kaitlyn. He heads back to TN Saturday morning. He needs to be with my Mom now. Thank you to my Aunt Connie for flying to TN to be with my Mom so my Dad could be up here.

Our tough little fighter 2 days out of surgery

Our favorite nurse so far...Mumtaz (sp?) What an amazing lady with a beautiful heart. Kaitlyn got moved to a different part of the PICU today so we had to say goodbye! She was her nurse the last 3 days. The whole staff has been great we just really connected with Mumtaz.

Wednesday, November 18, 2009

24 Hours Out Of Surgery...She's An AMAZING Little Girl

According to the nurses and doctors Kaitlyn's recovery is right on track. She's had a few ups and downs but apparently this is "normal." It's difficult to see her like this. They are having a hard time keeping her still and sleeping. The nurse said that this is common in kiddos with Down syndrome?! She's on several medications. Some of them include a morphine drip to control the pain along with an anti-anxiety to help calm her and an amnesia medication to help her not remember. A line that was placed in her pulmonary artery to monitor the pressures in her heart was removed this morning. This was an extra line put in to help monitor her pressures since she had a little trouble coming off of bypass after surgery. So one tube down and several to go. Its PROGRESS so we'll take it. Her next major milestone will be to start weaning her off the ventilator. Things change in an instant around here so we will see what today brings. The nurses are great. They talk about Kaitlyn's surgery like it is minor. And even though in doesn't seem minor to us it is one of the simpler surgeries compared to many of the kiddos in the Pediatric Cardio ICU. You would not believe what some of these kids have been through, soooo sad! Please continue to pray for Kaitlyn and all the other little fighters on her floor.
Below are some pictures of Kaitlyn this morning. They are a little hard to look at but let me explain why I feel its necessary to post them on her blog. When I found out about Kaitlyn's heart defect I searched far and wide looking for info about her upcoming surgery. I had read all the medical stuff and I just wanted to find things that would help prepare me for what we were about to go through. I found this on different blogs. It helped me tremendously. So if there is a family out there who follows our story who has been placed on a similar path I hope this helps them. Kaitlyn will continue to recover and each day her pictures should look better and better! Thank you to everyone who is praying for our AMAZING little girl!

Our Amazing Little Fighter!

Please get some restful sleep my beautiful angel!

Tuesday, November 17, 2009

She's Out of Surgery!!! And Some Pre Op Pictures!

First the update.
Kaitlyn went into surgery this morning at 7:30. She was happy, and a little hungry. She was sleeping when they took her back. We received a couple updates throughout the surgery. The last one was from Dr. Ohye himself. She's out of surgery. He said she did well. She had a little trouble coming off bypass but now is doing great. They are waiting for her bed to get ready. We can see her in about an hour and a half. They also did an echo right in surgery to look at her valve repair (this was the most important part of surgery). They said it appears there is zero leakage which is better then the average healthy heart. We are thrilled! Praise God! I will continue to post throughout her recovery. Thank you for all the support and prayers!
Now it's time for pictures of my little hero. These are from the couple days before surgery and her pre op testing.

Happy Baby!

I wanted a picture of her chest before surgery, don't ask me why, I just did!

The morning of Pre Op before the tests began.

Her chest x-ray, as my friend Angie would say, "Really!"
Come on now!

Her sedated echo. She was sound asleep.

This morning before surgery all cute and happy in her gown.

Monday, November 16, 2009

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!

Wednesday, November 11, 2009

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.

Neighbors Helping Neighbors...Friends Helping Friends!

Having a sick baby is a lot of work, and having two small boys and our everyday responsibilities on top of Kaitlyn's demanding care has become impossible. We are in survival mode. Our priorities have changed. Things that once would have been considered to be on top of our to-do list have been put on the bottom or temporarily removed. The kids are number one. Kaitlyn's paper work and her therapies are next and everything else gets put on hold.
All the leaves up here in Western Michigan have fallen. Most people are working hard to get them up before the snow falls. We planned on ours waiting until spring, we have little time and zero energy. Sunday afternoon much to our surprise we heard noise in our front yard. Our close friends (who are also our next door neighbors) were raking our leaves. What an awesome random act of kindness. Thank you, thank you to Fred, Becky, Caden, and Morgan!
I would also like to thank everyone else who has been helping us out. We've needed to ask more favors then ever before in the last weeks and months since Kaitlyn was born. With her surgery next week we need to rely on a lot of upcoming help. Thank you to everyone who is rearranging their lives for us in the next weeks, whether its to be with the boys or Blair and I in Ann Arbor. We are truly thankful!

Happy 5th Birthday Brady!


Please, everybody look at me!

Today I'm five years old, you see!

And after, this I won't be four,

Not ever, ever, any more!

I won't be three-or-two-or one.

For that was when I'd first begun.

Now I'll be five a while, and then

I'll soon be something else again!

-Mary Louise Allen

I can not believe Brady is turning five. The years are flying by. This past Saturday we "threw" together a party. Normally I spend much time planning a party for the kids. I really enjoy having our friends and family over. My favorite part is making a special cake. Brady's actual birth date is the 17th. Because Kaitlyn's surgery is scheduled that day we had to do things different this year. I made a few quick calls to local friends, my dear friend Tiffany made an awesome cake and we had a party. My mother in law watched Kaitlyn for us, we had to keep her away from all possible germs. It was a great day! Thank you to everyone who helped make this day special for Brady!

Caden, Morgan, Brady, Bryce, Macey, Elyse, Paige, Caleb

Thursday, November 5, 2009

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!

Would you like to make a difference today!

If you would like to make a difference today, please see below...(This is a true request) A 5yr old boy named Noah Biorkman, is in the last stages of a 2 1/2yr battle with Neuroblastoma Cancer. The family is celebrating Christmas next week and Noah's request is to get lots of Christmas cards..Lets get him some.

Please send cards to:

Noah Biorkman
1141 Fountian Viewcircle
South Lyon, MI 48178

Thank You!

His story is in the Detroit news, read here.

Feel free to reblog this to reach as many people as possible!

Wednesday, November 4, 2009

When It Rains It Pours!

Surgery Is Scheduled

We went to Ann Arbor yesterday. The insurance company approved a consultation with Dr. Richard Ohye. We have been waiting (fighting) for this day since we found out about Kaitlyn's heart defect when I was 27 weeks pregnant. Due to her increase in symptoms, mainly lack of eating they saw no reason to wait for surgery. It is scheduled for November 17th...Ugh! Brady's 5th birthday! MOTT children's hospital seemed so confident the insurance company would give the final OK that they scheduled the surgery. Blair and I are cautiously excited! We still have the fear PH won't come through, but we have to keep the faith. I'll write more specifics about the surgery later. My main focus now is to plan a little party for Brady. He is at such a fun age, and he is well aware his birthday is very soon. I need to make it special since we won't be here on his birthday!

Please Pray For My Mom
My mom is having surgery tomorrow. She has been having a lot of pain in her left femur. After many tests finally a bone scan found a dark "suspicious" spot in her bone marrow in her left femur. They will go in and remove what they can and biopsy it. Our biggest fear is cancer, but the doctors said it can be one of many things. My mom is the strongest woman I know and unfortunately isn't new to battling cancer. When she was 21 she had Hodgkin's Lymphoma, and with great doctors (U of M) and a lot of determination she beat it. She needs a lot of prayers right now. Unfortunately I can't be there but my sister went down to be with her and my dad. Thanks Jenna! We are praying for a miracle right now. I'm so sorry I can't be with you tomorrow Mom!

Happy Belated Halloween!

Out of all the candy the boys managed to get their hands on the favorite item in their bags were these crazy vampire teeth. So silly! The week around Halloween H1N1 over took our house. Both boys were mildly sick with fevers and a nasty cough. I on the other hand got horribly sick. Definitely the sickest I've been as an adult for sure. We questioned whether or not to let them go out trick or treating but we decided they could go. Brady was much better and Bryce...well I thought a little fresh air couldn't hurt! For the first time in years Brady wasn't a super hero, he decided to be a pirate. Bryce had his heart set on Scooby Doo, and after much searching in stores and online (it was sold out everywhere) he settled for a "cute" monkey. He liked the costume at the store but on Halloween he informed me he didn't want to be cute :( Next year he wants to be scary! Kaitlyn and I stayed home. I didn't even dress her up! She slept through it all. There's always next year!