Not fair

I just really want my Hailey back. I miss her so much it hurts!! It's not fair that all the druggies and child abusers get healthy children. Why us? Why did she have to die!? It doesn't make sense. We would have been amazing parents to her! Just really sad tonight and missing my baby girl. :'(

Happy 2nd Birthday, Hailey!

Today Hailey would have been 2 years old. I'm not going to do a long post at the moment as we are currently on vacation in Wisconsin. I just wanted to write a quick "Happy Birthday" to my very special little girl. We love and miss you so very much!

5 Months

Just wanted to do a quick little 5 month post. Leyna is getting really good at grabbing everything in sight! She is also sitting up really well, almost with no support at all. Of course we still have to be really careful and watch her since she likes to lean back suddenly! We're currently in the process of moving to a new house, so this shall be fun. Packing and moving with a 5 month old!! Luckily my Mom is coming out from North Carolina to help entertain Leyna for us while we pack. Then it's off for another adventure, July 16th we are off to Wisconsin for a week. So if you have any tips for flying with a soon to be 6 month old, please let me know! I am going to need them!



Leyna in her beautiful dress a friend of mine brought back from Hawaii



Pretty Girl!

Our hippie baby!

4 Months Old

I know I am a little late with her 4 month update, but she keeps me so busy!! I am loving every moment with her. Leyna has really started "talking" and laughing a lot now. I LOVE it! At her 4 month appointment she was up to 15 pounds 11 ounces and 24 inches long. She's in the 90% for weight and 50% for height. She is just growing so fast!
Tomorrow is going to be a very bittersweet day for us. Tomorrow Hailey has been gone for 18 months and Leyna will be the exact same age as Hailey when she passed away. I don't know what it's like having a child longer than 4 1/2 months, and now I will get to find out. It's amazing how many emotions can come back when you think of these milestones. It hurts so bad but there is also so much joy now that we have Leyna in our lives. She brings a lot of happiness to us. I wish I could just spill all my emotions on here about what it's like having a rainbow baby, but I have never been very good at letting it all out. Maybe one day when I can figure out how to explain it a little better. All I can say is that it's so worth it if you're reading this and thinking about having a rainbow baby yourself.
I also wanted to let anyone who stumbles across my blog from a search index know that there are so many HLHS survivors out there. Don't give up on your baby if you just got a diagnosis of HLHS. I am posting this because the little monitor on the right hand side telling me who has visited my page also tells me how someone found my blog and what they typed in the search index. I see a lot of searches for statistics and what not. I recomend you check out Sisters by Heart. Also check out the video I posted last month. There is so much hope for your little one!

Ok, now for the fun part. PICTURES!


4 Months Old

Leyna with her Mia Marrone Heart Charm



Happy on one of our many walks we take!



If you would like to purchase a Mia Marrone heart charm, Click Here!

3 Months Old

Leyna turns 3 months old today!

She is finally out of her colicy stage and becoming a happier baby everyday! She smiles a lot and is always "talking" to us. It's so fun to see these stages develop and to hear her sweet voice. We never got to hear Hailey "talk" and she only smiled once, the day of her Glenn surgery. It really is amazing to watch her grow and learn, I love this little girl SO MUCH! I just wish she was able to meet her big sister.
She still does not like to be put down at all though, but I am not really complaining. I am sure in a few months she will want to spend all her time on the floor playing with her toys and less time in my arms. The only thing we're having a hard time with is tummy time. She refuses to be put on her tummy, she just screams her head off. So if anyone has any good advice how to get their little ones to actually enjoy tummy time, I would appreciate it!

Sisters by Heart is continuing its mission to inspire and support newly-diagnosed HLHS families.

With your help, we can reach more families and spread the word that a diagnosis of HLHS is not the end, but just the beginning of a life-changing and rewarding journey.

Our children, both survivors and angels, bring us HOPE for the future of HLHS. Please, share our message so that we may continue to reach out to those in need.

2 Months old

Leyna turned 2 months old on Friday! She had a great doctor appt, and is at 12lbs 1oz and 23 inches. She's in the 75th percentile for weight and lenght. She's got her daddy's genes for height that's for sure!

She also got her vaccines and did really well. Only cried for a little bit and was fine for a few hours. But she didn't have a very good night. Woke up crying a lot. But a little Tylenol helped with that.

Here is our gorgeous girl at 2 months!

SMILE!

Leyna started smiling on March 10th. She gave her first real smile to her cousin Andrea. And I finally caught one on camera!

Also, please keep Jenny and her daughter Aly in your prayers. Aly is only a few weeks older than Hailey and Jenny and I found out around the same time about our daughters diagnosis. We've been following each other since before our daughters were born.
Aly will be having her fontan surgery tomorrow and could use lots of prayers for a fast and safe recovery.
http://www.alyjeansspecialheart.com/

Almost 8 weeks old!

I know I haven't posted much in almost 2 months, but it's hard for me to even check my facebook let alone write a blog! This girl sure keeps me busy! She is a very very needy baby who wants to be held 24/7 (she happens to be in my arms now a I type this with only one hand.)Life sure has been interesting though. She went through a very fussy and unhappy stage for about 3 weeks and with lots of trial and error we figured out she has a milk protein allergy. So we are giving her breast milk and supplementing a bit with formula because I'm not making enough for her (her jaundice made her a very lazy eater in the beginning so not much milk came in)So she is now on my milk and a soy based formula.
She has been growing so fast too, already at 11 pounds. I can't wait to see how big she is at her 2 month appt next Friday. I'm not looking forward to her having her vaccines, but it needs to be done.
Other than that, not much going on. Just lots of eating pooping and sleeping (well not much sleeping I guess!).
Well someone is getting fussy, so I will try and post a few pictures for you all to enjoy. One of these days that she lets me put her down, I will post a longer update. But for now this is all I can do! I don't know how so many of you post so much after having a baby, I can't do it!

One of my favorites

Just took this one today.

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!