A week old!

Tomorrow Leyna will already be a week old! What a week it has been too.
While we were in the hospital with her, Hailey's primary care nurse, Louise came in to meet Hailey's little sister. What a very special moment that was! Louie is such a wonderful nurse and a really great person. She was at Leyna's baby shower as well.
Here she is holding our sweet girl.

We were released from the hospital on January 21st. It felt so great to put her in that car seat and walk out the door with her. We waited so long to do that with Hailey and never got to. It was like a dream as we left the hospital and then got in the car to drive HOME! It's another day that I will always remember.
Here she is the day before we were released. We call this her "Milk Drunk" picture :-)

Unfortunately Leyna was discharged with a small case of jaundice that we were told would get better on it's own. Well we went to her follow up appointment today and her level had risen quite a bit. The nurse made a call to Leyna's pediatrition (who we haven't even met yet!) and he wanted to do a blood draw (they had been using some thing to scan her forhead before)to get an acurate reading of her jaundice level. So we headed over to the clinic across the street and got her blood and then we went home to wait for the results.

Leyna on her way home from the doctor.

About an hour later we get an urgent call that she needs to go over to the hospital as soon as possible to be admitted and placed under the billi lights. I started crying my eyes out after that phone call. We have to bring our daughter to be admitted to a hospital. Didn't we just go through this??? Why?? Now I know, it's just jaundice and it's a simple thing to fix but just the thought of being in a hospital again was horrible.
We got there and they took her back to draw some blood and set her up under the light. The first blood draw came back clotted so they had to draw another one. Poor Leyna just screamed! And I cried! But they finally got all the blood they needed. The first 15 min of being there was horrible. They have all the same alarms that the hospital Hailey was in had and they kept going off. And then there was talk about a possible feeding tube in case she wasn't able to eat the ammount they needed her to. All this was bringing back a rush of emotions and memories and I just couldn't stop crying. But then the Doctor comes in and she said they ran the blood twice and her Jaundice level was only at 18 (the other clinic reported it to be 22.5) So at 18 she could technically go home for treatment. But since we were already there and set up, it was decided that we just spend the night and get rid of this jaundice now and go home in the morning. So here I am writing this from a hospital room while I watch my daughter sunbathe from across the room.

So we should be going home tomorrow morning after they check her level one more time. I will update again once we are home. But I will leave you with a cute picture of our beautiful new daughter asleep on grandpa's shoulder.

Oh yeah, THE PACKERS ARE GOING TO THE SUPERBOWL!!! YEAH!!
There will be pictures of Leyna in her Packer gear coming soon!

She's Here!!

Leyna was born yesterday morning at 10:15am. She is 8 pounds even and 19 and a half inches long. She's so beautiful!! Havent slept much though because all she does is cry if we're not holding her, I'm sure not complaining though!!

At the hospital

We're currently at the hospital getting ready to meet Leyna! We went in for our normal NST this morning and I had been having a bad headache since last night so they checked my blood pressure and it was pretty high. So they are concerned about preeclampsia. Urine and blood tests came back okay, but headache and blood pressure are still a problem.
So now we are in the Labor and Delivery unit on the monitors waiting to hear if they want to do the C-section tonight or tomorrow morning!! Either way, we will be meeting Leyna in less than 24 hours!

More Ultrasound pictures

We are now having doctor appointments twice a week until we meet our beautiful little girl. Every Monday we have Non Stress Tests and every Thursday we will be having an ultrasound.
Leyna passed her NST with flying colors this past Monday and then today her ultrasound looked great. Her amniotic fluid is still on the high side but it's the high side of normal. So nothing to worry about.
Here are a couple of the pictures we got today, just look at these chubby cheeks!!!

Hailey Video

I just wanted to share a video a CHD survivor made for us a few months ago. It's a beautiful video with lots of photos of our Angel.

All For Leyna!

I love listening to this song!

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!

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!

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!

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!