A Blessing For Mason!!!

We have absolutely wonderful news for one of our heart friends! He and his mother have been in California waiting for a new heart. His Dad and his siblings came into town to spend the Easter Holiday together. Last night they got the blessed call that a heart was waiting for them. And today, on Easter Sunday he is receiving his new heart! To have his family their right now is such a blessing. I can't begin to explain the emotions as a fellow heart mom that I have right now. My Bishop gave me a blessing once right after her cancer diagnosis and afterwards explained to us that Jesus did not just die for our sins but for our burdens that we are carrying also and for our pain and suffering. This is a miracle and on Easter Sunday.

Please remember them and the family that is suffering so much during this time. What a special gift that this family gave them and many others. My heart aches for them right now. We know what it's like to bury a child. It's the many prayers that were said on our behalf that got us through that very difficult time in our lives.

Baby Steps!!!

We are feeling great joy right now. In more ways than one. Ellie had her heart echo last week. And the result is that we are seeing a slight improvement. Her injection fraction went from 17% to 19%. They are not really seeing improvement month to month, but looking back from October is where they are seeing a difference. This is a big step considering they didn't think her heart could show improvement this far out from her surgery. What does this mean for Ellie? Well, we continue on the wait and see road. They would like to see her I.F. get above 26% so that as her body grows, her heart can keep up with her. In the meantime, this gives us the time we need to get the tumor to go away. And we hope and pray that it will. If she does need a heart in the future, we need her tumor free for a year. So while we wait, we take baby steps, hopefully in the right direction. Down for the tumor and up for the heart. Man she is complicated. But she continues to melt our hearts and can make anyone smile with her cute sign language and babbling words like "ta-choo" for thank you and how she says "ahhhhhh" after she pretends to take a drink. She needs to be on the coke commercial. She also puts her hand up in the air when the grandfather clock strikes the hour and taps out each chime. The cutest is during prayer, she bows her head, puts her finger to her lips and says "sshh, sshh, sshh" the whole time. It's funny what they pick up, even when you don't realize that your doing anything.

On another "baby steps" note, our little Ellie is starting to walk!!! She's got the arms in the air, and looks extremely unsteady on her feet, but she is doing pretty well. We are trying to savor these next few weeks and days before the new baby arrives. Ellie might have a fun time adjusting to not having all the attention.

Reality Check!!!

Wednesday night, we spent the evening in the hospital with contractions that were every three minutes apart. It kind of hit us that we are really not prepared for this baby. Ellie has been a great distractor for this pregnancy. Even though she is not due for another six weeks, so many things ran through my mind. Including that we have yet to find a double stroller, get Ellie moved to the other room, buy a car seat, and oh yeah, we HAVE NO NAME! We have always gone to the hospital with a couple names in mind that we really like, but nothing is sounding right. So here is where you come in. I need suggestions. Any suggestions will be very helpful. We have a few that my kids put on the list and and few that Nate hasn't totally said "no" to. So thanks to Mimi, she gave me this idea. We are going to have people help us with the naming process. But to make it a little interesting, we are going to throw in a little incentive. There is a surprise if we choose a name that you suggested. And you get the honor of helping us make this difficult decision. In a few days we will come up with a short list and do a poll to see what are the favorites. Thanks for your help!!!

Good News!!!

Ellie in her cute hospital scrubs waiting for the MRI. We were supposed to be starting at nine and here it is almost ten. Not bad for having gone without food since midnight. She kept rolling her stroller back and forth in the tiny room.

Ellie can't resist something to climb into. Any drawer or box or basket is where she wants to be.

We had our MRI yesterday for the tumor in Ellie's neck. She did well with no hick-ups. We waited anxiously till they called us and informed us that the tumor appears to be shrinking again and that the lymph nodes that they were concerned about are back to their original size. (They were concerned because the lymph nodes were only enlarged on the side of the tumor, so they were worried the tumor was spreading). Yea!!! This is a big step for Ellie. We recently talked to Dr. E, our cardiologist, and discussed the tumor issue. She said that they won't list any kids for transplant, unless they are cancer free for one year. But unless the tumor is removed, they still don't know for sure if it is a neuroblastoma. They think it is, but a biopsy must be done to know for sure. We are just hoping that it goes away completely so that we can focus on her heart. If she needs a transplant, I want her to have that chance. It's hard to sit back and wait. That's what we have done since she was two months old. Thank goodness for the advancements that have been made. And the six medications that she is on right now. It is hard for me to think where she would be if she were born even five or ten years from now.

On another note, after being intibated yesterday, she is really struggling with her airway. She sounds awful! I feel so bad for her, because this happens every time she goes under general anesthesia. We deal with about two weeks of raspiness and coughing and throwing up till her throat gets better. I wish there was an easier way.

Ellie had another pass out last Saturday night, and the interesting thing is that she had her synergis shot five days earlier. I wondered about this when she was hospitalized last month for this. Looking back at her calender, she has been passing out four to five days after she is getting the synergis shots since November. They usually last for a few days and then we don't get another one for about a month. It's sure a big coincidence if they are not connected. I do think it has helped to have her on iron, because she only had one so far this month.

Anyway, we will take the good news for now and hopefully get more good news at her next cardiology visit. Thanks everyone for all your prayers. They truly lift us up and carry us through days like this.

Ellie's MRI tomorrow!

After being delayed a week, due to some scheduling problems, we have gotten Ellie four weeks with no illnesses. She's ready for another MRI. Yuck and yeah and the same time. I always dread MRI's! Her last one went pretty well so I am praying that this one can be uneventful. This one is just for her tumor. Dr. E thought since we have an echo soon, that they did not need to worry about the heart this time around. If you could please keep Ellie in your prayers and also the doctors so they will know what to do with the tumor. We hope that it is shrinking again. We will update you as soon as we can.

W.M. Awards- I won!!!

We were letting her skin air out because the electrodes are hard on skin. But she crawled up next to me on the couch, kicked back, grabbed the remote and pointed it at the T.V. I really hope she didn't pick that up from me.

We took the girls for a train ride on Free day. Crowded, but the girls loved it. It was worth the smiles.

The girls on their school Valentine's Day. They wanted their hair curled for the festivities.

Ellie likes to hang out in any basket. Including the toy basket. She even tried to climb into a basket that was a not even a foot wide.

Well... I managed to do it again. I won the Worst Mother Award. It started on Friday when I got home from taking the kids to school, when I noticed that Adrie left her Valentines on the table. Since her party didn't start till 12:30, I thought I would run them to her right before. So when I brought them into her classroom, she had the saddest look on her face. And to my surprise, they had their valentines all passed out and were going through them. I felt so bad and was imagining her disappointment when she opened her backpack to find that they had been left at home! She ran up to me with a smile as the tears were welling up in her eyes. I am not sure if it was a mix of disappointment and happiness that I finally showed up.

The day before Valentine's Day, we make an extra special trip to the store, of course I am doing this last minute, to buy some candy for the girls. I put the bag down and didn't think more about it until morning. So I recruit Nate to take the girls upstairs so I can make their Valentines. (Last year I did a Heart Attack Valentines where the girls woke up to a Valentine by their bed and followed yarn wrapped through the entire house. And every couple of feet their was a heart telling them what was special about them.) They loved this and look forward to what I come up with every year. So after they got done making Valentines for me, they came and found their Valentines on the table. At least the finished product was cute. But I have always tried to have them wake up to their Valentines.

Then on Sunday, Macy almost 9, lost her tooth. She was so excited!! She talked about it all day and into the night. She hadn't lost a tooth for a few years, and because Adrie had recently lost a few teeth recently, Macy was excited that it was her turn. So when we tucked her in, the last thing she said was, "do you think the tooth fairy will come visit me tonight?" and we said, " sure, now get to bed." So we went to bed and I didn't have a second thought about it till morning when we heard whimpering coming from the girls room. We walked in to Macy crying and Adrie interpreting for her. She goes on to tell us that Macy is sad because the tooth fairy failed to come. As I am racking my brain, the only thing that I can come up with is, "maybe the tooth fairy took the holiday off." Then Adrie proceeds to tell us that the tooth fairy came on Christmas Eve along with Santa Claus for her tooth. This only makes Macy cry harder. Hopefully we can pull it together tonight. Once again, she is reminding us all night that she lost her tooth.

So you can see that I earned it. I nominated myself for the award. I just hope my girls forgive me for my short comings. I could blame it on the prego hormones, but I admit that I just dropped the ball this year. Hopefully I will have it pulled together next year.

Update on Ellie: She is so stinkin cute lately. She is doing this dainty clap and wave that is priceless. She has an MRI next week and I always get super nervous for that. So I think we will know more on her status, but every time I say that, we just end up confused as ever.

It's CHD Awareness Week!!!

When Ellie was 32 weeks gestation, she developed Tachycardia (a fast heart rate) and subsequently a severe heart murmur. Shortly after delivery, it was heard again by our pediatrician. Visit after visit I kept asking about the murmur and had other troubling signs that something was not right. She would breathe in short shallow breaths, she would sweat profusely when she ate. Her legs always had a marbling to them that looked like a rash and there were no pulses in her feet. She quit growing from two months to five and a half months. She also quite babbling about a month before she was finally diagnosed. These were things I continually went to the doctor for. But every time I was reassured that she was o.k. and that they had a simple reason for it. I am not telling you this to worry, but a mother's instinct is so strong and wish I had gone to a different doctor for a second opinion. It's worth it if you feel that something is not right. Ellie was born with a Coarchtation of the aorta and a bicuspid aortic valve. If caught at birth, is usually repaired with one surgery and possible stints later on. Because hers went undiagnosed, she developed severe dilated cardiomyopathy and at the time doctors said she was probably days away from death. Some have not been so lucky. This is when we entered the world of CHD. I have met so many wonderful people that have been such a great support to us and those that already knew us that have prayed on our behalf. We are so grateful for all the medicines and measures that have kept Ellie sustained thus far. I wanted to post about the statistics of CHD for awareness week.

CHD Statistics-

*Every fifteen minutes a baby is born with a CHD.

*Congenital heart defects are America’s #1 birth defect. Nearly one of every 125 babies is born with a CHD (almost 1% of all children born each year!).

*Congenital heart defects are the #1 cause of birth defect related deaths. 1 in 3 children who die from a birth defect have a congenital heart defect.

*This year almost 40,000 babies will be born with a congenital heart defect.

*In the U.S. twice as many children die from congenital heart defects each year than from all forms of childhood cancer combined. Yet funding for research of pediatric cancer is 5 times greater.

*From 1993 to 2003 death rates for congenital heart defects have declined by 31% due to advances made through research!

*There is not yet a preventative cure for any type of congenital heart defect.

*Of every dollar the government spends on medical funding, only a fraction of a penny is directed toward congenital heart defect research.

Hopefully by spreading awareness, someone might be spared the sorrow and the grief that comes along with this birth defect. I would love to see more research go toward this. And as technology gets better, we are hopeing to see research go towards a possible cure.

Update on Ellie-She has not had a passing out episode since she has been on her life watch monitor. Yeah!!! But it would be nice to see what her heart is doing. She has an MRI on Feb. 23 if she can stay healthy for 3 weeks before. Wish us luck on that one! Hopefully I can post on her first steps soon. She's taken a few so far.