With only two days left until Liam's first birthday, Im feeling a huge amount of anxiety and an overload of emotions. In a way I can't believe he's already going to be a year, yet it feels like its been years in our CDH journey. I remember the day Liam was born like it was yesterday. I had gone to the hospital in labor for what seemed like the hundreth time and when the doctor came in and told me they were going to preform a c-section within the hour and our little man would be in my arms. I cried for many reasons. I was so happy that I would be able to hold my bundle of joy in my arms and in disbelieve that it was really over. The end of my pregnancy had been so painful and no one had known why. I cried because I was so happy that the pain was finnaly going to stop.
Week 35 Day 5 (last pregnancy post)
Why the pain? Well when the surgeon opened me up he saw my uteros was already torn open and that had caused me to go into labor and be in so much pain. That pain didnt compare to the emotional pain I felt when we were told about Liam's condition.
We were very blessed when it came to Liam's condition. Once he was off ECMO and had his repair surgery, he flew through the stages just progressing rapidly and healing. After 6 weeks in NICU Liam was discharged and we brought him home for the first time. For a baby with CDH 6 weeks is a short time to be in NICU. Most are there for 3 months or even years in some cases. We had prepaired ourselves for the long haul so when they approached us just a few days before and told us he was going home, we were utterly shocked. They asked us if we felt he was ready. We responded:
"Do YOU think he's ready?"
Ofcourse WE were ready to take our handsome Monchichi home but we werent in a hurry. And we absolutely in no way going to rush the doctors. They felt he was ready so that was enough for us. It was a suprise to everyone. The doctors hadnt even expected it, they didnt even have time to discuss it really. Liam was just making such a miraculous recouvery. If it wasn't for our primaries Sue Dehaun and Cindy Silva spending every shift teaching us and readying us, we wouldnt have been ready. Thats the difference between nurses and amazing,smart, talented nurses who not only think ahead but care for their patients. We will never be able to thank them enough for their support and their part in taking care of Liam.
Sue (affectionately dubbed Dr Sue by Lanie)
Everyday was a new lesson on Sue's shifts.
From day one she started going through the discharge learning
protocol. When she would do anything with Liam she would explain everything. Sue volunteered to be Liam's primary and Im not sure if its because she fell in love with him, or because shes a mom and saw a young girl struggling to deal with her new born sons condition. Maybe alittle of both Im not sure. She had a way of putting my mind at easy as well as keeping my mind busy concentrating on things. She kept egging my on until I took up a few classes UCSF offered for parents. She knew when I needed a break and made sure I took one and made sure I ate. Sue was great with Liam. She would always talk to him, even when he was paralyed and sleeping. She could tell by his STATS his moods and if he was in pain. Liam loved messing with her. He learned quick what would make the machines go off and do it. She's walk up to him and say "Now now Mr. You better stop that" or "Theres no crying in baseball" (always my favorite saying). When his paralytic would start to wear off, he would peak his eyes open and look toward her voice and as soon as I said something he would shut his eyes before she had a chance to see. After the 5th time she would just stand there and staire. Then he would open his eyes to peek out, She'd tell him how naughty he was being and he would smile at her. Ofcourse then he'd get another dose of paralytic because he wasnt supposed to be awake. She wasnt just great with Liam, she was great with Lanie. She would put lanie to work making her help get supplies from the supply closet and what not. She spend alot of time answering Lanies questions and explaining things enough for a 3 year old to understand. I think the most important lesson I got from just watching Sue was that just because Liam had CDH didnt mean he had to be babied. Sure he needed special care but putting him in a bubble wasnt what he needed. Thank you Sue. We love you and miss you!
Cindy is such an awesome person and nurse.
She had this bond with Liam that most nurses or doctors wouldnt bother to get. Cindy was alot like Sue, always teaching us and giving advice. We spent alot of time laughing over the little things Liam would do. She would share stories of her kids. Cindy had a special bond with Liam. Liam reacted to people the way they would react to him. She would talk to him in a gentle voice and tell him everything was going to be fine. When he was finnaly able to be held, she would hold him as much as she could. I would come in from break and she would look at me and smile big and say he had been throwing a fit and just wanted to be held. Liam was always content in her arms. Even after we left NICU we kept in touch. Every now and then we'd get an email or Id send an email. Cindy is just awesome. We thank you for taking care of our little man and youll always be part of the family!!
We couldnt have asked for better nurses or better care.
I try not to go down memory lane because of the emotions and the PTSD but when I do I like to concentrate on the possitives because it makes it easier to deal with.
God has truely blessed our lives.
When Liam turned
One Month we were estatic. Still we didnt really know if he would make it to be a year old. Everything seemed to be going great but we knew Liam. He would go forward then suddenly go a few steps back. Liam survivng CDH and turning One is overwhelming, joyous, and just a blessing. He is our miracle.
"And he went a little farther, and fell on his face, and prayed, saying, O my Father, if it be possible, let this cup pass from me: nevertheless not as I will, but as thou wilt."
Matthew 26:39
