Thursday, December 30, 2010

Leyna Update

We had another ultrasound today to check and see how our little girl is doing. We didn't get any pictures of her face today since she is already very far down and ready to go! We did see that she has lots of hair already and that she is doing her "practice breathing". That was fun to watch!
She is already at 6lbs 13oz! She is in the 90% for gestational age. They think she is going to be early since we are only at 35.4 weeks.
We scheduled a C-section for January 25th, but if she comes early we're going to try for a VBAC. It's a little scary but I really want to be able to hold her right after she is born. But either way, we will be meeting her VERY soon!! Only 26 more days until our C-section!!!

Here is the only picture we were able to get today. It's her big foot!

Wednesday, December 1, 2010

One year Angelverssary

I can't believe tomorrow has been one year since I last held my baby girl. One year ago she was placed in my arms as her heart took it's last beat and she flew into Heaven. No parent ever wants to hold their child as they turn cold, limp, and colorless. I'm surprised neither one of us ended up having PTSD. For the most of December and January all I felt was numbness. Nothing felt real, I was just waiting to wake up from a nightmare. The months following I still felt numb but also trying to remember that in the end, we did get to know such an amazing little girl.
We were so lucky that we got as much time with her as we did. She was also born with Coronary Fistula and this along with her HLHS is not a good combination at all. Of all the families I have followed, the combination of the 2 is deadly. Babies with HLHS and CF will not survive surgery without being on ECMO. And there is nothing else that can be done, the baby will have to be taken off life support.
We were lucky enough to be in a teaching hospital for Hailey's surgeries and they did something never done before in a patient with her condition. They placed a few stents in the arteries with the fistula. This is what helped her to come off the ECMO machine and be with us for the 4 1/2 months that she lived. In the end, the stent is what ultimately took her life. I'm sure if it wasn't the stent, it would have been something else. It was just her time.

After loosing Hailey, I have become a different person. I am a mother who has lots her child. I have also lost a few friends because they don't know how to talk to me anymore. I just look at it as their loss more than anything. I don't need them if they can't be there to support me anyways. But on the opposite end of things, I have become closer to a lot of friends that were otherwise lost in the background. It's amazing how people will come out and be there to support a person after going through something so devestating. I am so greatful for the friends I have and the new bonds that have grown. I am also amazed at how much closer it has made my husband and I. It's amazing what something like this can do to a relationship. It can either go one way or the other, I have seen it a lot in the heart community. Unfortunately it usually goes the wrong way for most couples. Josh and I are very lucky to have the love for each other that we do. I don't know what I would do without him. He's been my rock. My parents also have been amazing in their support and also in helping to raise more awareness for congenital heart defects. I am very luck to have the family that I do.
The other negative effect this has had on me is my constant worrying. I have a constant fear that the people in my life that I hold close, are going to die. If my husband is late coming home from work, I think the worst. He must have gotten in a car accident and is gone. Same with when he goes out fishing or goes anywhere without me and he's been gone a little bit longer than expected, again I think the worst has happened. I have to keep telling myself not to worry, that everything is fine. But it's always in the back of my mind that something bad has happened. Same with my Dad. He has not been feeling good for a while and all I thought was something was horribly wrong and he was going to die. It took the doctors a while to finally figure out it was just arthritis. Again, my mind just would always go to the worst possible outcome. And finally, with this new pregnancy every morning I make sure Leyna is moving. I am in constant fear that she is just going to pass away inside me and I will end up having a stillbirth. Or that when she does come home, she is going to die of SIDS. I know how small the chances of either of those happening are extremely small, but so is the chance of having a child with a heart defect. It's just very hard.

We're going to try and make tomorrow a positive day for us and just remember the time we had with Hailey. Be greatful that she was here and that we got to be her parents. We're going to remember the time we spent with her, and not the times we are missing out on. Everything happens for a reason, and Hailey was needed for something greater than we could offer here on earth.
We will be spending tomorrow dropping off over 70 blankets to Doernbecher Children's Hospital and then we will go pick out a Christmas tree to bring home and decorate with all of Hailey's ornaments. And also do all the other Christmas decorating in the house. We're going to turn December 2nd into a day of tradition, a day of celebration for the life that she lived. We want to be able to look forward to this day and think of it as a positive day to do things for others. I know Hailey would want us to be happy and not cry over her. I miss her more than anything and would give anything to have her back. But that's never going to happen, so we just have to learn to live without her and do good in her name.

Rest in peace baby girl, you will never be forgotten. I love you so much!

Tuesday, November 30, 2010

Follow Up Appointment

We had our regular doctor appointment today and everything is looking great! Apparently last week there was a misunderstanding and the fluid level was never even at 33. So they checked it again today and it was at 21.6! (High normal is 25). So that is great news and makes me feel so much better. Her heart rate is a strong 156 and she is currently breech. But last week she was head down, she sure is an active little girl! All the kicks and punches are an amazing feeling. I could sit and feel these forever. But I am also so excited that she will be here in 8 1/2 more weeks. Everything is ready in her room as well. We have her crib all set up with cute pink bedding, a stocked changing table and a closet full of clothes!
I'm having my baby shower December 18th and couldn't be more excited. I will have to post some pictures afterwards.

Next doctor appointment in 2 more weeks! Can't believe we're already at 31 weeks!

Monday, November 29, 2010

A day in history

November 29th is an important day in the history of Congenital Heart Defects. On November 29, 1944, the Blalock-Taussig Shunt was born. The BT Shunt (as it is now commonly known) gave many CHD infants like Hailey a fighting chance at life. There is a great movie out there called Something The Lord Made. It's a movie on the pioneering of open heart surgery. I highly recommend it!

Today is also a sad day in the heart community. Steve Catoe one of the most vocal, active, inspiring people in the CHD world lost his battle to Tricuspid Atresia. He was 44 years old. You can check out his blog here. And here is a link to the blog talking about his passing. You will be greatly missed, Steve.

And last of all, Hailey's 1st Angelversarry is coming up on Thursday. This is going to be a very hard day for us, I know I don't write many post about how I am personally feeling throughout this year of firsts without our daughter, but I will try my best to write something on Wednesday. There's a lot I want to say but I have never been a great blogger and getting my feelings out there. But I want to do it for all my followers, especially the one's who have recently been through their own loss.
On a good note, our blanket colletion for Doernbecher Childrens Hospital is going great! We have about 70 blankets so far that we will be bringing in on Hailey's Angelversarry this Thursday. Just going to try and keep ourselves busy that day and making children smile, is a great way to do so!

Monday, November 15, 2010

Doctor Appointment and Amniotic fluid

So we had our monthly appointment on Friday. I also had to drink that lovely orange soda (glucose test). I passed the glucose test at 114 (need to be under 140). The doctor said that Leyna is measuring a little big, being at 3 pounds already. He also said that my amniotic fluid level is at 33. Apparently 25 is the high end of normal. So now that has me a bit concerned after reading up on it on the internet. I just got off the phone with my doctor's office a few minutes ago and the nurse said yes, my fluid level is high but to not be concerned about it. She said the doctor is not worried, so I also should not be worried.  Well I'll tell you something.....I'm worried!!! How can I not be? We lost our first daughter, I really don't want anything to happen to this one either. I'm already always checking to make sure she's moving and worrying about her, and now I have this to add on top of all the worry. Just great.
We have another appointment on the 30th, so I am going to try and not make a big deal of it and find out where the fluid level is at our next appt. Hopefully it went down. If you're at all into praying, please pray for this!! And if you have experienced this of have any info, please let me know!

On another note, we did get some great pictures of Leyna!

A great profile shot

Look at those chubby cheeks!

I think she looks a lot like Hailey in this picture.

Tuesday, October 19, 2010

25 week update and Blanket drive

Josh and I went to another ultrasound appointment on the 15th, and everything is still looking as perfect as ever! We got a great view of her heart and I can't believe how beautiful it looks. I never knew what a 4 chamber heart looks like on ultrasound, but now I do and it's amazing to see. She is growing like she is supposed to and is even up to 1 pound 10oz already! Only a week and a half left in this 2nd trimester and we're on to the 3rd!!! It's so exciting! We also tried to get a 3D picture of Leyna but she was not wanting to cooperate at all. She kept her hands in front of her face the whole time. So we're hoping at our next appt we will get a good look at that beautiful face of hers!

I also wanted to mention that we are currently doing a blanket drive in honor of Hailey's life. We plan on collecting new and unused blankets between now and December 1st. We will be bringing them to Doernbecher Children's Hospital on December 2nd (Hailey's 1st Angelversary). This will be a great way to help us get through an emotional day for us. Click Here to see the facebook event we created for our blanket drive. If you need more information and would like to donate, please respond via facebook or e-mail me 

Monday, September 20, 2010

Appt went great!

I know I am a little late updating my blog. But our appointment on the 16th went great! We had our Fetal Echo and everything is looking just like it's supposed to. They also did another anatomy scan and everything there looks perfect as well. All her organs are in the correct place and working like they should be. Other than that, there really isn't much to update about. Our next ultrasound will be on October 14th where we will be getting more pictures like these:

Isn't she just so cute?!

Look at that face!

Yup, still a girl!

4 chamber heart

Profile shot

We are at 21 weeks as of yesterday, only 19 to go!!! Hoping these months go by fast!

Tuesday, September 7, 2010

Lost and Found Connections Abound

I just wanted to introduce you all to a great blog I came across while reading a fellow heart mom's blog. They offer a list of blogs for everyone needing help and support at the moment. The blog is Lost and Found Connections Abound. You can submit your own blog as well.
One of their links is all about pregnancy and infant loss, I haven't read much on it yet but I do plan on it. Here is the link to the pregnancy and infant loss support page. This page contains a list of blogs on people going through the same thing as many of my followers.

On other news, everything here is still going great! I have been feeling Leyna move more and more. It's only once or twice a day, but the movements are getting stronger! We will be going in for our fetal echo next Thursday, the 16th. We will also be getting another ultrasound to check out how she's growing. I can't wait to see more pictures of her!

Here is the link to the blog I was reading when I came across LFCA. She is a new "heart mom to be" and could use lots of support.

Wednesday, September 1, 2010

Dear Leyna

People notice there's a special glow around you.
You grow Surrounded by love.
Never doubting you are wanted;
Only look at the pride and joy in your mother and father's eyes.
And if sometimes between the smiles
There's a trace of tears,
One day You'll understand.
You'll understand
There was once another child
A different child
Who was in their hopes and dreams.
That child will never outgrow the baby clothes
That child will never keep them up at night
In fact, that child will never be any trouble at all.
Except sometimes, in a silent moment,
When mother and father miss so much
That different child.
May hope and love wrap you warmly
And may you learn the lesson forever
How infinitely precious
How infinitely fragile is this life on earth.
One day, as a young woman
You may see another mother's tears
Another father's silent grief
Then you, and you alone
Will understand and offer the greatest comfort.
When all hope seems lost,
You will tell them
With great compassion,
"I know how you feel,
I'm only here
Because my mother tried again."

by Pandora MacMillian

Tuesday, August 24, 2010

Leyna Faye McCrow

As you know, we will be having a heart healthy baby girl this January! It feels so good to say "heart healthy". We are so excited that we will be able to have a "normal" pregnancy from here on out. It's something I have never gotten to experience. I don't have to worry about what's going to happen after she's born. I don't have to ask myself questions like "Will we ever get to bring her home?" "Will she survive open heart surgery?" and "What's will the future with a heart baby be like?" I wish more than anything that Hailey was here and we knew what it felt like to live life with our heart baby, but it's also so wonderful to know we won't have to worry about these things with our new little girl. I can't even describe how it feels, we're just so relieved to be having a healthy baby.
During the ultrasound as the technician was looking at her heart, she was very quiet and didn't say much. She knew our past and so we were getting really worried. My heart was about to come out of my chest it was racing so fast. But finally she typed "4 CH" on the screen! What a relief that was! She really had us worried for a minute! After she was all done with the scanning, the doctor came in and told us that everything looked perfect! She's growing just like she's supposed to, along with that 4 chamber heart of hers!
We decided on the name Leyna (pronounced lay na) it means "Little Angel" and "Bright and Shinning Light" because she really is!
We have the actual fetal echo on September 16th to confirm the 4 chambers and to take a detailed look at her heart. But we at least know for sure that there are 4 chambers! Anything else would be a piece of cake compared to HLHS!
I will update as we hear more after our appointment. (Sooner as well).

Thursday, August 19, 2010

Who's ready to hear about our day!?

We are having a HEART HEALTHY baby GIRL!! She has a beautiful 4 chamber heart!!

A beautiful 4 chamber heart!!

It's a girl!!!!!

Her cute little profile!

I'll post more later, right now we just wanted to celebrate!!

Wednesday, August 18, 2010

Tomorrow is the BIG day!

Tomorrow morning we will be going in for our 16 week ultrasound and they are going to take a look at the baby's heart to make sure there are 4 chambers and that the aorta is the correct size. We won't be going for our fetal echo until around 20-22 weeks. But for now, at least we will know of any major defects (even though there will not be any!!) We will also be finding out the gender at this appointment! So exciting! So nervous about the whole thing as well. We know we have only a very small chance of it happening again, but you just never know with these things. We're staying very positive though. If anything happens to be wrong, we are on the next flight to Boston to have a fetal intervention where they are able to to an in utero surgery to try and correct any abnormalities. Even after all we've been through, I still feel an abortion is not something we could handle if something was wrong. But there won't be anything wrong, so nothing to worry about!

So who wants to take any guesses as to what we are having? I'm guessing a heart healthy little GIRL!

I will update tomorrow as soon as I can, we plan on going shopping for baby clothes after our appointment, so it may be a while, but if you're on my facebook I will post an update on my phone as soon as we are done at the appt!

Saturday, August 7, 2010

Josh Wilson - Before the Morning

I just wanted to share a song that was actually written for a little boy with HLHS. I have this CD and just love it. It's very hard to find in store, so if you want a copy you may have to order it online. His name is Josh Wilson and the title of the CD is "Life is Not a Snapshot".

Josh Wilson "Before the Morning" 

Do you wonder why you have to 
Feel the things that hurt you? 
If there's a God who loves you, 
Where is He now? 

Maybe, there are things you cant see, 
And all those things are happening 
To bring a better ending. 
Some day, some how, you'll see, you'll see. 

Would you dare, would you dare to believe 
That you still have a reason to sing? 
Cause the pain that you've been feeling, 
It cant compare to the joy that's coming. 

So hold on, you gotta wait for the light. 
Press on, and just fight the good fight. 
Cause the pain that you've been feeling, 
It's just the dark before the morning. 

My friend, you know how this all ends. 
You know where you're going. 
You just don't know how you'll get there. 
So say a prayer and hold on. 
Cause there's good for those who love God. 
But life is not a snapshot. 
It might take a little time, 
but you'll see the bigger picture. 

Would you dare, would you dare to believe 
That you still have a reason to sing? 
Cause the pain that you've been feeling, 
It cant compare to the joy that's coming. 

So hold on, you gotta wait for the light. 
Press on, and just fight the good fight. 
Cause the pain that you've been feeling, 
It's just the dark before the morning. 

Yeah, yeah. Before the morning. Yeah, yeah. 
Once you feel the weight of glory 
All your pain will fade to memory. 

Once you feel the weight of glory 
All your pain will fade to memory, Yeah. 

Would you dare, would you dare to believe 
That you still have a reason to sing? 
Cause the pain that you've been feeling, 
It cant compare to the joy that's coming. 

Would you dare, would you dare to believe 
That you still have a reason to sing? 
Cause the pain that you've been feeling, 
It cant compare to the joy that's coming. 

So hold on, you gotta wait for the light. 
Press on, and just fight the good fight. 
Cause the pain that you've been feeling, 
It's just the hurt before the morning. 

All the pain that you've been feeling 
Its just the dark before the morning. 

Before the morning, Yeah yeah. 
Before the morning.

I believe that our "joy that's coming" is our new little baby. We've already been through the dark, now we are just waiting for our morning. I love you so much Hailey! 

Click here to watch the videos.  One video is the music video to the song, and they also have a video documentary with the father telling the story behind the song. 

Tuesday, August 3, 2010

Our baby is growing!

We sure had a busy last few weeks. Hailey's first birthday party went well, not as many people showed up as I had hoped but I can understand why someone would not want to attend. It's not your typical "Happy" Birthday party. But we still had a great time. We released balloons at exactly 4:09pm, the time she came into this world. We also got lots of donations that we brought up to Doernbecher Children's Hospital a week later. We still have one more surprise gift that we will be bringing them sometime this month. I will post that when the day comes! 

We just got back on Saturday from a week long vacation in Wisconsin visiting family. We rented a house on the lake with my parents and my brother with his family. I got to meet my niece, Taylor for the first time last week. She is only 2 months older than Hailey is. It was so great to meet her but as the days went on, it was getting harder to put on that happy face. By Wednesday I was so stressed out I just needed to go cry for a while. My amazing husband was right there with me to hold me and support me, he's so wonderful. I just wish it wasn't so hard to be around little girls Hailey's age. Taylor is adorable and a sweet little girl but I couldn't get my mind off the fact that Hailey should be here with us on vacation. She should be getting spoiled by grandparents and playing with her cousins. It was really a wonderful vacation in all, but just a but much with missing Hailey. 

Our last ultrasound went really well. We got lots of good pictures and the Doctor says that so far everything looks great. We had the test where they measure the fluid behind the neck that tests for Down Syndrome (a possible connection to heart defects) and that test was negative. So far so good. Our next appointment will be on August 19th where we will be looking for all 4 chambers of the heart and checking out the Aorta. We will also be finding out the gender on that day! I can't wait to find out how everything is looking. We won't be having a fetal echo until week 22 or so. But at least we will be able to see the 4 chambers in 2 weeks!! 

I also wanted to put a note in about an upcoming NASCAR race. Kenny Wallace will be racing a CHD car, and Hailey's name is on the hood along with many other CHD children. The race will be on August 20th. You can learn more about this car and fundraising site by clicking here.

And here are our newest ultrasound pictures! These are 12 weeks 4 days. 

Here's a profile shot. Do you see the heart above the baby??

Here is another profile shot. 

Our baby's brain.

Here's a shot between the legs. What do you think? Boy? Girl?

Week and day: 14 weeks and 2 days

Belly Button in or out: Still in. :)  Never came out while I was pregnant with Hailey, so I think it may stay in!

Wedding rings on or off: Still on of course!

Food cravings:  Fruit

Food aversions: Everything!

Nausea: Has pretty much gone away!

Energy level: Getting back to normal again

Weight gain:  Still no weight gain yet. 

Mood: Pretty good, getting very excited and anxious for the 19th!

Maternity clothes: They are a must now!

Size of baby: Crown to rump is 3 1/2 to 4 inches (8 to 9.3cm) The size of a lemon and weighs 1 ounce!

Baby's changes:  This week the baby's ears have moved from the neck to the sides of the head. Eyes have been moving gradually from the side of the head to the front of the face. The neck continues to get longer, and the chin no longer rests on the chest. 
Sexual development continues. It is becoming easier to determine male from female by looking at external, genitalia, which are more developed. 

Next appointment: The BIG appt!! It's on August 19th!

What I've been up to: Nothing new, just working after a great vacation with my family! 

Friday, July 16, 2010

Almost to 12 weeks!

This Sunday is a big day. First of all, it would have been Hailey's first birthday. This is going to be a very hard day for us, but we are going to be having a big celebration to remember her beautiful life. I think that's going to make the day a bit easier to get through. We knew this day was coming, I just hope we are able to deal with it. I know she wouldn't want us to be sad but we will be. I can't believe it's already been a year since we first me our daughter. It seemed to have flown by. So have these past 7 1/2 months since she left us. But we will do everything we can to enjoy her special day.

Sunday is also the 12 week mark in our pregnancy. Which is the milestone that most pregnant women hope to achieve because there is now a very low risk of miscarriage. We will be getting another ultrasound this coming Thursday to make sure the baby is growing like it's supposed to. We're hoping around the middle of August is when we will get to find out if it's a boy or girl. We do however have to wait until around 20 weeks to make sure the heart is healthy. But we will be sure to keep you all posted!

I would also like to add a disturbing fact we recently had to deal with. As you know I have been having really bad morning (all day) sickness. So my doctor prescribes me a drug called Phenergan. Well I decided to look it up on to make sure it's in either class A or class B before I was going to take it. And you know what? IT'S BEEN KNOWN TO CAUSE CARDIOVASCULAR DEFECTS IN THE FIRST TRIMESTER!!  I couldn't believe it as I read this. Our doctor is not going to like us when we go back on Thursday. So of course I tossed the pills and I am now just "dealing" with the nausea. Here is the link to the information. I hope you warn other pregnant women to not take this drug after reading this. I know I will be.

On a happier note,

Here is the latest picture of our little peanut at 10 weeks.

And now for the 11 week status updates!

Week and day: 11 weeks and 5 days

Belly Button in or out: Still in. :)  Never came out while I was pregnant with Hailey, so I think it may stay in!

Wedding rings on or off: Still on of course!

Food cravings:  Fruit

Food aversions: Everything!

Nausea: It's very bad! Feeling nauseous 24/7 

Energy level: Can't make it through the day without a nap.

Weight gain: Lost about 8 pounds so far. Which is "okay" during the first trimester only. 

Mood: Excited!!

Maternity clothes: Will be needing them soon!

Size of baby: Between 1 1/2 to 2 1/2 inches (4.4 to 6cm) Weight is about 0.3 ounces (8g) About the size of a large lime!

Baby's changes: Fetal growth is rapid now. The crown to rump length of the baby doubles in the next 3 weeks. The head is almost half the baby's entire length. As the head extends (uncurls or tips backward toward the spine), the chin rises from the chest, and the neck develops and lengthens. Fingernails appear. 
External genitalia are beginning to show distinguishing features. Development of the fetus into a male or female is complete in another 3 weeks. 

Next appointment: July 22nd at 10:30am

What I've been up toGetting ready for Hailey's first birthday BBQ and also preparing to go to Wisconsin to visit my family!