He had a cath on his lungs yesterday to check his pulmonary veins to see if they had been damaged due to the intact septum. The cath went fairly well all of his veins seemed be working the way they were supposed to. They scheduled a lung biopsy for this afternoon to try to figure out what is going on with his lungs. They are still thinking he will have to go the with a heart/lung transplant but we wont know anything until we get the results of the biopsy back. If the biopsy comes back good then we can go ahead with the norwood.
Parker has plans of his own though. Overnight they have discovered he may have an infection so they have postponed the biopsy for now. They have started him on antibiotics already so hopefully it will take care of it. I really dont know how I get through everyday without having a complete breakdown. This is all so much to have to deal with. I wouldnt wish this on my worst enemy. This is literally one day at a time like everyone has been telling me. I just feel like we arent making any progress and still dont have any answers.
On a happier note, we got to hold him for the very first time yesterday. I was so emotional. It was the best feeling in the world just to hold him even if it was just for a few short minutes. Seeing my husband hold him was my favorite part. I was in awe at how much love I felt for him at that time. We made this child together, I carried this child for 9 months, and I was finally able to make him a daddy. Just seeing him hold him and look at him was the most precious moment of my life. I am so glad I was given this opportunity to give him this perfect little boy.
I will keep everyone updated about the infection when we find out more, and of course the biopsy. I am ready to get things started. Parker has been here for 9 days and we are still at square one. I wouldnt change it for the world though. All of the long days in the hospital and the sleepless nights, all of the tears are so worth it because he is so perfect. I love him more than I ever imagined.
He is so precious. Good results on the cath and you're figuring out that this HLHS thing is not only one day at a time, but sometimes one hour at a time. Zoe's setbacks left me utterly frustrated and in tears. So many times you just want to pick them up and run far, far away. You're doing great. Continue sending him love and light, even when you're not bedside. We're continuing to pray for all 3 of you and HOPE for the best possible outcome.
ReplyDeleteHugs,
Stacey
Oh Heather, I'm so sorry. It IS hard. This whole journey is so hard, so much harder than any parent should ever have to endure. As if it's not enough that our babies have such major cardiac issues, it's beyond annoying and pushes us to our limits when they have stupid little infections on top of it. I get it. It sucks. Bodie had c-diff, paraflu and an MRSA blood infection between his Norwood and his Glenn. To have to spend months in the hospital for something not even cardiac related made me SO angry!!! Like Stacey, there were many times I just wanted to take Bodie and RUN far, far away. In fact, I think the only thing that kept me from doing so was the iv meds he was on - wasn't quite sure how I'd administer them at home! LOL
ReplyDeleteAnyway, just try to take it one day at a time, one hour at a time. Things change on a dime for these kids, especially before and after the Norwood, so there's no use trying to think further out than that. If you do, Parker will get wind of it and mess up your plans! ;-) MUCH love and many prayers out to you and Parker and hoping he settles down so you can get his Norwood underway!!!
Heart Hugs,
Amy
Sweet, sweet baby boy! Just breaks my heart! Yes, this journey is hard and filled with many tests along the way. There will be days where it seems like all you do is cry and things are spinning out of control. However some where along the way you get that little moment of peace, feel the love and beauty in that one perfect moment. Makes everything all worth it.
ReplyDeleteKeep putting one foot in front of the other on those tough days. Take baby steps if you have to. Lift up your eyes and trust in HIM. Praying for you!
"I lift up my eyes to the hills- Where does my help come from?
My help comes from the LORD, the Maker of heaven and earth.
He will not let your foot slip -
He who watches over you will not slumber;
Indeed, he who watches over Israel will neither slumber nor sleep.
The LORD watches over you
The LORD is your shade at your right hand;
The sun will not harm you by day, nor the moon by night.
The LORD will keep you from all harm -
He will watch over your life;
The LORD will watch over your coming and going
Both now and forevermore."
~Psalm 121
This journey is so much longer and harder than anyone could have explained to me. I am glad the cath came out well. The infection setback is rough and seems to happen to a lot of our little ones. Very sad that they get an infection at the hospital. Hope didn't have her Norwood until she was 16 days old and did really good...considering the original hospital told us she wouldn't make it and they weren't willing to take the chance doing the Norwood. I am keeping you all in my thoughts and prayers.
ReplyDeleteHave a happy, healthy New Year!
Hi Heather,
ReplyDeleteI'm so sorry things are going rough for you all right now. I am glad you got your first snuggle with your precious little guy though!
Know you are always in our thoughts and prayers! Parker is a little fighter, I can see it in his sweet eyes =)
Love and hugs,
Tara
I'm so sorry things are rough right now. Yep one day at a time and sometimes even one hour at a time. You always have us heart mommy bloggers to lean on, we're just a blogpost away. Stay strong mama!
ReplyDeleteHeart Hugs
Angela
The pictures made me cry! My prayers are being sent to your family.
ReplyDeleteNeysa (Mason's mom)
Heather,
ReplyDeleteHe is such a beautiful baby and I am so glad you were able to finally hold him. You are doing great. Just keep breathing and taking it one moment at a time. Parker will tell you when he is ready for everything. I think its crazy how he is following the exact same path as Jake. Stay strong. I am here anytime if you need to talk.
Love,
Kathy
He's a cutie!
ReplyDeletemy youngest spent her first Christmas in the ICU. Now she's had 2 Christmases at home....and I just hold my breath for all of Christmas Eve--hoping she'll be home and safe for the holidays.
I'm sorry. I wish no one else had to walk the path you're walking. My heart goes out to you.
I hope things go well for Parker--especially in the coming weeks.
-Nanette
Heather,
ReplyDeleteWe're all here rooting you on and praying for you, Adam and Parker.
Lisa
He is so precious?
ReplyDeleteI'm so sorry that you guys are going throught all of this. We are all just glad that you and Adam finally got to hold your baby boy. You three are in our prayers and he will make it through this.
Heather; you and your precious family are in my prayers. You are very brave as is Parker. I pray the peace of God's love for all of you. Stay strong and give it to God and let him carry all of you. Bev
ReplyDelete