Happy Birthday McKenna

Happy Birthday to my sweet and spunky McKenna! She has made our family complete! She has taught me so many thing......mainly that it is okay to let go a little :) My girls absolutely love each other, and I can't imagine one without the other. Two peas in a pod, peanut butter and jelly, Big Mac and Small Fry......HAPPY 3rd Birthday McKenna Molene VanVleet!!!!!

"I'll love you forever, I'll like you for always.  As long as you're living my baby you'll be!"  Love You Forever by Robert N. Munsch.

 

 

Macy's Medical Update

Well there has been a lot going on in the last few weeks regarding Macy.  We are still fighting with insurance about coverage for Macy's new drink.  We were denied coverage and are in the appeal process.  I hope to hear something soon!  In the meantime, Jeremy and I have been purchasing this drink out of pocket.  I am very thankful that I have been able to find it discounted on Ebay, but it is still costly considering she goes through 1 case a week.  Her appetite seems to have improved since starting this drink, and I pray that we are making postitive changes! 

After our appt. with our metabolism specialist, we headed for lab work.  The checked some lobs that are related to Macy's hormones, and will possibly tell us if Macy has a growth hormone deficiency.  The labs have come back abnormal, therefore they are sending us to Endocrinology at Riley.  We see them next week on Wednesday.  I am very nervous about what they will have to say, and will probably have a sick stomach on that day, just like I did yesterday for our GI appointment.

We saw our new GI specialist for the first time yesterday.  She is the head of the GI department, and is AMAZING!  After much talk, and her in depth study of Macy's test results from her liver biopsy and veno-gram she had done back when diagnosed with Abernethy Malformation, she does not believe that Macy's liver malformation will lead to liver failure (or a transplant).  The one complication that can happen due to this malformation is the long-term effects of not having your blood cleaned by the liver is her neuro-cognitive function.  This does not always happen, but can.  She does not think that we should pursue a fix from the doctor in Chicago (whom she knows very well).  She is planning on doing a few things right now: 1) she is contacting the doctor in Chicago just to make sure he feels the same way she does about avoiding surgery at this time.  2) discussing Macy's case with the surgeon who diagnosed her back in 2008 to make sure he doesn't feel that another biopsy or veno-gram should be performed.  3) lab work.  She is checking Macy's blood clotting, amonia levels, aldolase (muscle disease type lab), and also checking for Celiac's disease.  We were going to take her on Friday or Saturday to have these labs done, but now we are going to wait until our appt. with Endo is over just in case they want to run more labs. 

Our Sweet Macy with her preemie outfit!

 

I am not going to lie....we are feeling like we are in storm again.  We are boarding up and buckling down.  We will remain strong.  We have each other, family support, an amazing little girl being stronger than ever, and one amazing GOD leading our team! Please pray for insurace to see the need for assistance, strength for all of us in the household, and for some answers for our sweet little Macy! Thanks for continuing to follow our journey and showing us so much love and support!  

We're Still Kicking!

Well, I have failed you all once again!  I have failed to update all summer.  The last time I updated was JUNE, wow!!!!!  Things have been crazy here!  I will just bullet some of the big events we have had since June.

1. We spent much of our summer at the lake with our family :)

2.  Macy attended Summer Camp at McKenna's school and got to go on many fun field trips.  (This is where she developed her love for 3D movies)

3.  I got a new job teaching Kindergarten at Macy's school.  I LOVE my job!!!!

4.  Macy started first grade and is doing a great job!  We have all been working our butts off to make sure she keeps up with her peers :)

5.  McKenna attends preschool full-time and no longer has any issues getting dropped off anymore.

6.  McKenna is now fully potty-trained (day and night) :)  We are so happy!!!

7.  I am still working on my master's.  I will be done in May.  It's quite the task to complete with my new job!

8.  Jeremy built our family a fire pit and garden that we have been enjoying all summer and fall!  He's getting really good at starting fires :)

9.  We just got back from Chicago for a family vacation.  We visited Shedd Aquarium, Willis Tower, The Museum of Science and Industry, The American Girl Doll Store, The Zoo, and The Navy Pier.  As you can tell is was quite the whirlwind trip, but we had a BLAST!

10.  McKenna will be 3 soon, the holidays are just around the corner, and Macy will be 7 in January.  Where has the time gone?

On a more serious note, we headed to Macy's metabolism specialist yesterday for our follow-up.  We used to see him every 3 months, then 6 months, and this last between visits was a year.  Well, we are back to 6 months.  Things didn't go the greatest, and I knew it was going to be a difficult appointment going into it.  Macy has not grown in height in a year.  No growth!  Weight has gone up slightly, but not much. I knew this because I am the one who buys her clothes, and weighs her all the time.  That has been my biggest concern for 6 1/2 years!!!!  The doctor believes that Macy is facing these issues due to her rare liver malformation.  He believes that her body may be having some malabsorption issues since her liver doesn't process correctly.  One change we are trying to make for her is to change the liquid she drinks (currently Pediasure) to a drink that is already partially digested, which should help with the malabsorption issues.  The tricky part is that it is very expensive.  We are trying to get insurance to cover this.  Our attempts at getting insurance to cover her Pediasure were unsuccessful, therefore we pay $40 a week for her supply of this.  With some help from her doctor updating her diagnosis' we are praying that insurance see the need for this and chooses to cover it!

We are also pursuing growth hormone testing to see if Macy has a growth hormone deficiency.  If she does, she will have to get growth hormone shots to help.  If Macy is not deficient in this hormone, and we don't see a positive change from the new drink, then we will get a referral to see Endocrinology to do some additional testing (possibly a MRI of her head to check her pituitary gland).  We are praying it doesn't get to that point.

Furthermore, we are getting a referral to the head of the GI department at Riley.  Through a support group I am in, we know many families who have children with Abernethy Malformation (Macy's liver malformation).  Many of these families have discovered that their children are candidates for a surgery to repair this malformation that is done by a doctor in Chicago.  When we first found out about this rare liver malformation there were only 30 documented cases in the world, and no surgical repair due to lack of knowledge.  They had pretty much told us that we will follow Macy through lab work until her labs are showing that intervention is needed.  At that point she would require a full liver transplant.  We now have promise that we can cure this!!!  So we are going to be heading to see the head GI doctor to present this information to her and allow her to look over Macy's charts.  We are praying she will see this as a good opportunity for Macy and send us to Chicago!

In addition to the appointment, we had some labs run yesterday.  Macy walked right in, climbed up in that chair, and held her arm out!  Yes, I am proud, but honestly it breaks my heart that a child can see this as a normal part of life.  It's not normal and she doesn't even realize it.

So needless to say, I was a little overwhelmed last night when Macy and I got home from the appointment.  I was reminded how much of miracle she is, and reminded that she is my hero!!!  Please pray for some answered prayers for our family!

On a lighter note, tomorrow is my wonderful husband's birthday!  He will be 33!  We will greatly celebrate this day because one AMAZING person was brought into this world on that day!!!  I love you Jeremy!  Happy Birthday!!!

I will try to post some pics soon.  My girls are growing and changing, and are as cute as ever!

Daddy Interview 2012

I love to interview the girls!  So in honor of Father's Day, I interviewed both girls about their Daddy!  They are so cute, and they have the best Daddy in the whole world!!!

Macy

1. What makes dad happy? “hugs”

2. How does your dad make you laugh? “tickling me”

3. What does your dad do when you’re not around?  “He…mmm…this is a hard one….he does …uuuhhhh….he sits down and watches baseball???”

4. What is your dad really good at? “Playing Hungry Caterpillars”

5. What is your dad not very good at? “He’s not very good at gymnastics!”

6. What does your dad do for a job? “He works at an office.”

7. If your dad were a cartoon character, who would he be? “Lightning McQueen”

8. How are you and your dad the same? “We both have brown hair and we both have blue eyes.”

9. How are you and your dad different? “We don’t have the same skin.”

10. How do you know your dad loves you? “Cause he give hugs and he tells me he loves me.”

11. What does your dad like most about your mom? “He likes joking around her.”

Me:  That I am awesome! Lol!

McKenna

1. What makes dad happy? “Cause he is my daddy.”

2. How does your dad make you laugh? “”Laugh at me.”

3. What does your dad do when you’re not around? “He gets home”

4. What is your dad really good at? “I don’t know.”

5. What is your dad not very good at? “On the couch”

6. What does your dad do for a job? “His boss.”

7. If your dad were a cartoon character, who would he be? “Mickey Mouse”

8. How are you and your dad the same? “Ummm, what?”

9. How are you and your dad different? “He’s bad.”

10. How do you know your dad loves you? “He gives me a kiss.”

11. What does your dad like most about your mom? “He’s crazy!”

Happy Father's Day!!!

Our Sweet Family

I know you are probably all wondering how we have been!!! We are great! I keep Facebook updated more than I do the blog anymore, so look me up on Facebook! Life is busy, and it's about to get busier!

I just accepted a job teaching Kindergarten at Macy's school! I am so excited to get back into the classroom and am so happy to be teaching at the same school that my child attends :) I have a few things I have to work out with my license so I am hoping it all runs smoothly. School starts August 1st!

Speaking of school, Macy is now a first grader! Kindergarten was so much fun for Macy, and she is going to miss her teacher like crazy!!!! Macy is attending a summer camp for school-aged students at McKenna's preschool this summer. I am helping about about 1 day week to take the school-aged kids on field trips. So far they have gone to the library, out to lunch, and to a local park. This summer they will also be going to the zoo, the civic theatre, the Indianapolis Museum of Art, and many more. McKenna has now graduated to the 3's classroom at preschool. She is a very smart little girl and has lots of friends :)

Medical update: The nodule Macy had has disappeared! Originally our surgeon wanted to remove it in April. In late March I noticed it seemed to be going away. I called the surgeon and asked that he put off surgery and recheck it in about a month. He agreed and checked it last week. It is gone! What was it? We don't know! We are just very thankful that it means one less surgery for Macy!

Macy went to her cardiology appt. in April. She had an echo and ekg done. The results showed mild to moderate leakage. The good news is that she has had this same amount of leakage for a while, which means nothing is progressing. Our cardiologist had always thought Macy would need another surgery in elementary school, but not she is leaning more toward teen years!!!! Riley Hospital has just started doing valve replacements in the cath lab, which means they go in through the groin and replace the valve. That means no open heart surgery!!!! When the time comes, we are praying Macy is a candidate!

Macy has managed to gain some weight over the last 2 months! She is up another 2 pounds. For some that doesn't sound like a lot, but for Macy that is amazing!!!! We are so happy for this progress!

In other news:

Jeremy and I just celebrated our 9 year wedding anniversary! We headed out for dinner with our two sweet girls in tow. We had a great night! We are planning a date night soon (for just the two of us), and we have already booked a fun vacation for just the two of us for next year to celebrate 10 years of marriage!!!! More details to come soon!

Macy has started gymnastics. She loves it! She has a lot a stiffness and a hard time moving her body sometimes, but her teacher has done a great job working at stretching Macy and makes some accomodations if needed :) We think this is going to be fantastic for her overall physically! McKenna will start gymnastics in December or January (she has to be 3).

Last weekend we headed for a weekend at the lake! My parents were away on a boating trip in the British Virgin Isles, but all four of us kids were there with our families. We missed our parents, but we had a blast! We played games, grilled out, took walks, played at the park, went for a boat ride, went tubing, and had the famous Tom's Donuts for breakfast! It was a great weekend! We are so excited that our summer is beginning and our trips to the lake are finally back!

Here are a few pics of our life over the last few months. Enjoy!

How Are We?

No, my girls didn't get glasses, but aren't they so cute in my glasses :)

What have we been up to? Between work, school, and running a household, we have all managed to paint our entire downstairs, see the pediatrician twice, take Macy for an ultrasound, and head to the surgeon's office twice....amongst other things.

Why all the appointments?

Macy has a nodule under her skin that our pediatrician has been watching for months. After months of trying different things, they got concerned when it appeared to be growing and sent us for an ultrasound. Following the ultrasound, they sent us to pediatric surgery to possibly have it removed. Two days prior to our appointment, it appeared to rupture, and drained blood. The surgeon figured with the draining it was resolving on it's one, still unaware of what it actually was. After two weeks, it still remained, but was much smaller and not growing. We headed back to the doctor's office, and they once again sent us back to the surgeon. The surgeon has decided to remove it :( We have scheduled surgery for April 13th.

On the bright side, the girls are doing great, Jeremy is loving his job, and I just finished my 5th Master's class (halfway done)! We have all been preparing for our upcoming trip to Florida to see my parents. We are so excited! This will be our first time driving to Florida, so this could get very interesting with a two year old :)

It's that time of year again for our annual March for Babies! I am asking all of you for your support. Those of you in the area are welcome to march with us on May 13th (contact me for more info). There are other ways you can help also! You can make a monetary donation directly online to our team page. You can also spread the word, and ask those you know to make a donation!!! Click here to link to our team page.

Have a great week!

Rock On!

We know how to party in The VanVleet household!



My two rockstars were ready for Macy's Justin Bieber party!!!




Check out her cake!



She went to bed on Friday night with a normal dining room, and woke up to this :)





Macy loved opening gifts, and appreciated each one of them. She gots lots of Justin Bieber items including a blanket, pillow, and sheets :)

Jeremy, Macy, and Me getting ready to blow out candles :)

Make a wish baby girl! Happy 6th Birthday Macy!

I guess that small scoop wasn't enough for Big Mac, lol!

The girls with their buddy Liam :)

What a great weekend!!!!

6 Years Ago....

6 years ago....on Friday, January 13th, 2006


My husband rushed me to the hospital worried about my elevated blood pressure. I was pregant with our first child.


I spent the next 15 days on bed rest at the hospital. I was miserable! I laid there on my left side, staring at the wall. My neck was stiff, my legs were weak, and I was swollen. I had fetal monitoring done every 3 hours, blood taken daily, constant medication, and I had to save my urine in a bin for testing. Poor Jeremy was taking the worst of it. He had to listen to me complain, and I often called him at work just to cry. Not only that, but he had to spend his time between work, me, and our pets at home. He visited me in the morning before work, called multiple times during the day, visited after work, returned with dinner, and stayed until we couldn't keep our eyes open anymore. He was worn out, and the baby wasn’t even here yet. Never in my life did I think life could get harder, but it did. My daily wheelchair ride was the joy of my day. Other than that, I was completely miserable.



On January 27th, during one of my wheel chair rides, I notified the nursing staff that I was seeing some black spots in my vision. The next morning, a neurologist was urgently sent to see me and performed numerous tests. He quickly assured me that the spots were not caused due to something neurological. Soon after he left, an ophthalmologist arrived. I didn’t get a good vibe from him. He did some tests, and left quickly. Within 2 hours nurses were in my room telling me that I was having an emergency c-section. They said my blood pressure had gotten so high that I had a mini stroke.



6 years ago today.....on Saturday, January 28, 2006







At 3:40 p.m., with my husband by my side, our daughter arrived. She had made it to 34 weeks, but she was only 3 lbs, 11 oz. She measured in at 15 ¼ inches tall. She came out crying! What a wonderful noise! She was here, she was alive, but her battle was far from over.

Her First Days

We named her Macy Elaine VanVleet. Macy had no significance, but Elaine did. Elaine is the name of my grandmother. Grandma Elaine is a very strong woman. My grandfather passed away one year before Macy was born, but my grandma continued on with life. Over the past year, no matter what, my grandma seemed to be so strong. My daughter needed to be strong; she needed to fight to survive. I knew that right away, and today, it couldn’t be truer.

My husband quickly spread the news to family who had rushed to the hospital. He made all the phone calls to spread the good news. He also headed to the NICU and took her first pictures. All of our family got to make short visits to our little angel also.

I, on the other hand, was not doing so well. Before the c-section, they gave me magnesium to control my blood pressure. I could barely open my eyes and I was constantly vomiting. Jeremy said the entire night consisted of my alarms going off and nurses rushing in to check on me. He was scared! I seriously felt like I was going to die. I don’t know what death feels like, but it had to feel similar to what I was feeling.

On January 29th, the doctors informed Jeremy that they heard a murmur when listening to Macy’s heart. They asked if he wanted to them do an echocardiogram to take a closer look. An echo is similar to an ultrasound, except it is on the heart. Jeremy agreed immediately. He wanted to make sure she was okay. I remember him coming to my room to tell me that they heard a murmur, but were pretty positive that it was simply that.

Sunday afternoon was a day I will never forget. A nurse practitioner entered my hospital room carrying a pamphlet and some papers. I knew at that point that this could not be good. She was sad to inform us that our little miracle had a heart defect called Tetrology of Fallot. Tetrology consists of four heart defects. She had a gap between the two walls on the bottom chambers, and a narrowed pulmonary artery (the artery that pumps blood to the lungs). Due to these two defects, it caused her heart to be more muscular due to it working so hard, and caused one ventricle to work harder than the other.

I was in shock. What was happening? This doesn’t happen to people like me. This happens on TV or in magazines, not to me! All of my siblings, cousins, friends, and coworkers have had children and they were fine.

At this point I didn’t know whether Macy would make it or not. They didn’t even inform us about that. They just said they were going to take her to the nearby children’s hospital to run more tests. They asked if I wanted to say goodbye. Goodbye? Was it forever? I cried and cried. I honestly can’t even tell you all the emotions I was feeling. It seriously was a blur. They had to literally take my daughter from my arms, since I was not going to hand her over! I reached for her crying as they carried her away. Would I see her again?

Today...Saturday, January 28, 2012

I have been spending the day preparing for my daughter's 6th birthday. Who am I kidding....I have been spending the last two months preparing for her birthday. Today is a celebration of her birth, but more than anything....today is a celebration of her LIFE! The life my little miracle has lived for 6 years now. The life that my little miracle has used to change the lives of so many. The life that my little miracle has used to bring me closer to The Lord, and change my life!

I am crying as I write this, and I often cry just looking at her. I can't even tell you what it feels like to watch her play with her friends, go to school, or even to simply watch her giggle! She is amazing!

So today, we celebrate LIFE! A life that started like a rocky road, and has been paved into a beautiful highway that goes on and on! A life with so much more of a journey! When we began this journey as a family of three, we had no idea where it would take us. Along the way we picked up another beautiful angel who has made us complete, and let me just say....the scenery is BEAUTIFUL!

Happy 6th Birthday Macy Elaine VanVleet!

Life With Our.....

...Sweet Little Macy!!!


What did I do last night? What do all mother's do the night before their child has surgery?

*Pray
*Worry
*Reflect
*AND CLEAN

Yes, I clean! I spent the last hour of my evening scrubbing my kitchen like I've never scrubbed before! Why do I do this? First of all, I am worried! But I also never know what the next day or few will hold for our family, and I can't imagine leaving my house a wreck! I may sound crazy, but that is just how my mind works!

We headed to the hospital early this morning. I was a wreck, it's is shocking that I was able to eat breakfast! Macy was AMAZING! She was not even scared at all!

Jeremy and I spent lots of time talking with the nurses, surgeon, and anesthesiologist. We discussed her medical history, her allergies to latex and morphine, her asthma, and her specific requirements for IV fluids due to her muscle disease. We....uuummm, I mean I was a mess! Although we have done this many, many times, we haven't had a surgery with Macy for 2 years.

Macy on the other hand, hopped in the Power Wheels and drove herself to the OR. She waved goodbye as she rounded the corner and drove through the OR doors!

Coming out of anesthesia was another story. They called me back before they would normally call a parent back. She was in the beginning stage of waking up. She had a frothy, blood-tinged spit coming out of her mouth as she coughed. She hadn't yet opened her eyes. I climbed in her bed and held her as she began to wake up. Our first clue that she was waking up was when the painful crying started. I started talking to her about our family, our fun night on Friday at Disney on Ice, her upcoming birthday, and I even sang "You Are My Sunshine". As I calming talked, her waking up process calmed, and she woke up in a much better state than she had been.

We were given a room on one of the PEDS floors, and were to be kept all day, possibly overnight for observations. We spent the day drinking sprite, watching movies, taking wagon rides, and even venturing out to the playroom. Our doctor came by during afternoon rounds, and was amazed at how well Macy was doing. He sent us home! She will stay home with me tomorrow, and if all is well, she will go back to school on Wednesday.

From a medical standpoint this is what our doctor said. Her adenoids were huge. She had a 90% blockage, and he thinks it will make a huge difference in her breathing through her nose, sleeping, and recurrent sinus infections. Her airway (trachea) is growing with her body. Although she has mild stenosis (smaller than most kids her age), there is nothing to be concerned about. He wants to take another look in 2 years. Her tracheomalacia (floppy airway), that she has had since birth, and even had 2 1/2 years ago (at her last bronchoscopy), IS GONE! Her tracheomalacia IS GONE! We couldn't be happier with the outcome of surgery today!

I have posted some pics of our day! Thanks again for those of you who prayed for our little girl!

Our sweet Macy turns 6 this weekend! I promise I will update following her Justin Bieber party :)