Monday, December 6, 2010

Praying for a miracle!

I had a GREAT day on Saturday with my husband. We got the opportunity to get some maternity pictures done. This is the only one Ive seen so far but I love it. We were praying for a miracle for our precious miracle Parker! Thanks again to Becky for taking time out of her busy schedule to do this for us. It is something that I didnt think we were going to get the chance to do because we havent had the extra money to spend. These pictures will be something that we will cherish forever! For everyone that knows Adam...he HATES pictures and refuses to get them done. So I had to do some bargaining with him and let him wear his hat LOL! He did awesome, we laughed and smiled throughout the whole session. It really made my day!

After we were done with the pictures we went to Babies R Us to buy something for Parker. We hadnt bought anything for him at all, it was something I just didnt want to do. I know that some people in our situation carry on like everything is "normal" and set up the whole nursery and have baby showers but this is something that I have really struggled with. Now as time is getting closer I knew that I was ready for us to at least buy him one small thing.

I really hate going into the baby section of any store its really depressing and makes me sad every time. But with my husband by my side and holding my hand we entered the dreaded store...We right away started looking through all of the clothes. Ive been at a loss at what to even buy him because of the surgery and all the tubes and wires. I have received some great advice on things to buy from other heart moms. Someone told me to buy some shirts or onsies that button all the way up so that the wires can come out of the little openings. So we wandered around amongst all the other pregnant moms, and new parents with their little babies looking for something as simple as an outfit to put our son in. All we could find is one little outfit! Thats it just one. My husband became upset because they dont have any options for a baby that needs special clothing. He said we needed to open up a store for babies that have to undergo surgery within their first few days of life. Its just tough because you dont know what to buy. You dont know how long it will be before they can even wear clothes so you dont know what size to buy. They didnt have a section of just hats you have to buy a whole outfit that comes with the hat and once again they cant wear the dumb outfit that the hat comes with! They didnt have any leg warmers which is basically all he can wear to keep his legs warm until hes able to wear clothes. Its so frustrating that something as simple as trying to find your own child an outfit can be so impossible! We do have some blankets so at least he will have something to keep him warm.

Sometimes I feel like such a failure as a mother because Im not prepared at all for when Parker comes home. I have very few things. I dont know what to buy him. I dont want to buy him anything because it makes me sad. I just feel like I cant hang on any longer but yet I want to hang on forever. I only have 16 more days. 16 more days guaranteed with him. 16 more days of him not having to fight for his life. 16 more days of knowing that he is safe and warm inside of me.

I know these next couple of weeks are going to be a whirlwind of emotion but like the picture above shows, we are still praying for a miracle.


  1. The next couple of weeks are going to be a roller coaster of emotions. I was very much the same...I didn't buy anything for Hope before she was born. Family members bought her a lot, including her christening gown and I am so thankful for everything they got her. We did have to rush around and buy stuff right before she came home, but it was nice to do it at that time. Blankets are the best and you want to stock up on them because even though he may not get to dress can always have a different blanket for him.

  2. {{{HUG}}} I didn't finds out about our son's heart condition until he was two weeks old so I cannot relate to what it is like knowing while pregnant. I am sure it is incredibly painful for you with a lot of anxiety mixed in. I struggled after Logan was diagnosed and had his first surgery. I was sad when I went to a store and saw families proudly carrying around their little babies.....and I couldn't because mine was home, very sick, requiring a feeding tube and multiple medications. It is hard and completely understandable for you to be upset. You are not a bad mother. In fact you are an amazing mother because you care so much.

    Just buy lots of blankets for him to be swaddled/snuggled in. Logan couldn't wear any clothes for several weeks following his first surgery. His nurses just swaddled him in big fuzzy blankets.

    Saying many prayers for you in the upcoming days. Have faith!!!

  3. I think I would do the same if I were you. Our situation is different, we had no clue Ella was sick until 4 months old. But I can tell you that coming home to her stuff after she was gone, was the worst experience of my life. Every where I would turn there would be something..something else to stab in my shattered heart.

    We found very few outfits and pajama's that would work with all her tubes and connections, it is are not a failure because of this..there is no right or wrong way to parent a sick child.. be gentle with yourself the next few weeks and months..

    I love the pics btw, they are gorgeous! ((hugs))

  4. Our daughter is now 11 months old and has Hypoplastic Right Heart Syndrome. Like you... I had mixed emotions during my pregnancy. And... like you I had no idea what to buy our daughter... what she could wear, etc. We bought CUTE blanekts with coordinating socks and mittens (to keep her little hands from pulling at the tubes). The hospital we had our daughter at supplied little white t shirts for her to wear once she was able to. The white t shirts looked cute with the blankets and matching socks. Once we knew when we were going home we bought size appropriate clothing at that time.

    I will be checking your BLOG for updates on your little one and praying for strength and endurance during this time - for all of you.

    Tina B
    Mom to Anna Grace (HRHS)

  5. I know what it is like to be in your shoes. Hang in there. This journey is never easy, but is one that is well worth it! My little Emma is the BIGGEST "little" blessing in my life. Her smile brightens my day. While our journey with HLHS looks to lead to transplant, it is not always this way and we have met many families who are able to do the three stage procedure. There is so much I could say, but know that each day (sometimes each minute) is full of changes. This journey has many ups and downs, but ultimately we have been blessed with little fighters. If you ever have any questions please ask. It helps to have people to share this journey with. Enjoy all the little moments...ask to change diapers, give baths, etc. That is YOUR RIGHT! God bless. We will be praying for you.

  6. The picture is gorgeous! So glad yall had a good time taking some pictures.

    And the clothes shopping, yes, we have thought the same thing! Button downs are hard to find, as are hats without an outfit in tow! I would find one outfit that worked, and buy like 5 of them in the same did get frustrating!

    You are a great mom and don't ever doubt that you will be a great momma when Parker arrives. It is so obviuos how much you love and care for him already =) Praying for a miracle with you!

  7. I can so relate to every emotion you are feeling. It is so hard to think about the "what if's" - Babies are such fighters. I never knew how amazing they were until Jordan had his first surgery. As hard as it will be try to enjoy the last few days. I swear Parker can feel your every worry. Once Jordan was born I made sure I had a positive attitude when I was around him. I really do think it helped...even the day of his surgery I help back every tear until I walked out the door. There were many nights I cried myself to sleep but for him I was positive when I was in his room. Pray ALOT! Prayer is the only thing that got me through many days. Will continue to pray for you and your family. Keep us posted!
    I agree with everyone else blankets is really all you will need until he is discharged from hospital. Many PRAYERS!

  8. Hey girl, that picture is really awesome. I'm sorry your struggling and I'm sending you my prayers. When that baby is born and home let me know ill take free Family pictures for you guys! You may be able to find a online store that offers special cloths for a special baby like Parker!!