Tuesday, November 29, 2011

Convincing Myself

I'm sorry for my lack of posts lately.

My absence has been for multiple reasons. Over the past week or so, I feel like I've been planted on the couch doing nothing but nursing, nursing, and nursing. It seems as if our little piggy wants to do nothing but eat, and I'm happy to oblige. He's been such a great nurser and I can already see his little double chin developing!

I've also been extremely tired. Mr. Double Chin eats literally every 2.5 hours. That is no different at night. Shane and I tag team the night time responsibilities- me feeding, Shane changing diapers and rocking the wee one back to sleep if he wakes up from the transfer from my lap to the crib. It's exhausting for both of us, but I'm thankful to have his help. I've got such a good husband. :o)

Today we took a trip down to the hospital that Joshua was born, lived, and died. We had a final cardiology appointment to make sure that Luke's heart is 100% healthy.

After an EKG and an ECHO, the cardiologist confirmed that Luke's heart is, in fact, 100% healthy. We are praising God that our 3 living children's hearts have all been checked and are all healthy. We were reassured that we can rest easy and know that there is nothing to worry about.

While today was such a great day, it was also an emotionally draining day for me. Being in the only place that my son lived is strangely comforting to me. Seeing the only people who really knew him helps me remember him in ways that I have forgotten. But it's also extremely hard to go back. The sights, smells, and sounds are triggers for me.

The cardiologist that we saw today was the same cardiologist that told us of Joshua's heart defect. He has been there from the beginning. It is extremely bittersweet that he was the one who told us that Joshua was so very sick over a year ago, and is now telling us that Luke is so very healthy. He was the same cardiologist who gave us so much hope for a future for Joshua. He was the same cardiologist who stood in the hallway with us after Joshua's first crash and told us that it was a miracle that he was still alive- after coding the way Joshua had coded, they don't typically see kids recover- yet Joshua did. He has been there through it all, and now we have no reason to have to see him again. That's a good thing, but definitely bittersweet.

As I continue to be told that Luke is completely healthy, I'm finding it difficult to convince myself that we really do have a healthy child. (our pediatrician is going to get sick of me calling her for reassurance about EVERYTHING!!!) After all of the research of Joshua's heart defect, I found out just how often babies die. It's not something we want to think about, but there are far too many babies that die from sickness and neglect every day. As I learned more and more about Joshua's defect, I slowly lost my ignorance. I have, in a way, become extremely jaded. Not fully believing that we had a normal pregnancy, birth, and newborn. I can't wrap my mind around the fact that, God willing, we will actually be able to keep this baby. We will be able to watch him grow and develop. We will watch him reach his milestones. We will have a first birthday party WITH the birthday boy!

A day like today is exactly what my heart needs to continue to heal. It's what our family needs to be able to continue to move forward. But it's bittersweet and extremely emotionally draining for me. We have 3 100% healthy children. Praise God!!!! (even if I'm still working on believing it!)



Christi said...

Sending you hugs Jill. I've never lost a child outside of various stages of utero so I can never understand to the full extent of what you're feeling. When our second child (a little girl) was in utero, I doubted that she would stay putt. I had beat the odds and kept losing babies beyond my doctor's understanding. When she arrived safe and sound after a crazy pregnancy and pre term...at almost 42 weeks on 9/11/02 so many called her birthday a bad day. Her delivery was dream like. Oh my heavens, the baby is here and she's okay...see with my first pregnancy (it was twins, I lost one) the delivery was a lot worse than I realized or knew at the time. Anyhow, when my little girl was 6 months old she was hospitalized for unexplained severe failure to thrive. They prepared us for the fact that was going to be where she stayed for the rest of life as they expected her heart to stop. We spent weeks in the cardiac ward with so many precious heart babies, I felt guilty for her taking up space when "heart babies" could actually use it. Yes, I was in denial.

And one day, we got to take her home. I won't write that the next months were not scary (for us and the doctors)...but she amazed them with everything she was doing that we were told wouldn't happen. We were lucky compared to so many. But a short time later we got pregnant with another child (our third living child) and when she was first born the other dr in our practice had me terrified that she was sick too. I share that because it took me a while to realize that she was her own person and try not to worry about every.little.thing.like I had to with her older sister. I don't wish those nerves on anybody.

I admire you. It took me a while before I could walk into our Children's Hospital (even for the specialist appts) without feeling weepy reliving all the moments that we spent there. For us there were many tears of joy, but the mother's heart never forgets. Healing will happen just allow it in your own time and not have others tell you otherwise...which is what I was trying to write in the first place. Joshua will never be forgotten and is very loved. He's watching over his siblings and celebrating their healthy hearts. We are blessed to have such amazing children to call us momma.


Lis said...

You know better than anyone that sometimes life just doesn't make any sense. Some days I just cry because I truly wanted more children, but well, pregnancy just isn't my "thing" apparently. I have to remind myself daily that I got to keep the one I have and that despite very minor temperature issues still remaining, she's a perfectly healthy,moody tween now.Watching my great nephew through the pictures and status updates struggle and pass away at just 6 and half weeks, it reminded me what a gift I've been given. Every single day is a gift and I admire you so greatly for having the courage to bring Luke into this world. Many would not have, I'm sure of it. I for one will never plan another pregnancy as long as I live because two losses are all my heart can bare I think, but I am praising God for my wonderful daughter and praising God for your three healthy children and the love you'll always have for sweet Joshua. God Bless you and your family this holiday season.~Lis

Auntie M said...

Oh Jill! I can't even imagine the emotions swirling around you...
It is amazing how smell and sound can trigger so much~emotionally and memory-wise both good and bad. I can only imagine how odd it must have been to be back there reliving the good and the bad and walking in with hope and trepidation over little Luke this time.
I am so very grateful that Luke is healthy (!!!) and that you don't really have a reason to go back there. But I also can understand how seeing the people who cared for Joshua would be comforting to you too.
I guess I would say, if you feel the draw to go visit once in a while, do so. I know the nurses and doctors and staff won't have forgotten either your family or Joshua.
My mom worked at Children's Hospital in Seattle for years and I know how attached the staff gets to their little patients and their families and how they all grieve when one is lost. And how they always wonder how the family is doing after that time. It has been 8 years since she worked there and she still talks about certain families.
I'm sure Joshua's team would take joy in seeing your healthy Luke and would also be there for you as the only people who really saw Joshua day in and day out.
In the meantime, my thankfulness and joy is joining with yours that little Luke is as healthy as can be.
Much love to the whole family,

Amy said...

I have followed your blog for a while but have never left a message. I feel a strong urge to do so today. My son, Mason, was also born with HLHS and is now 2 1\2 years old. I recently saw another heart mother post a similar message to yours. As heart mom's our eyes have been opened to a world we did not know existed. We have seen and heard things that no one should ever have to experience. My son was in the hospital for the the first 13 weeks of his life. During that time, I know of 8 children that passed away and 3 children that received transplants. During one of Mason's many stays in the hospital, a little girl coded down the hall. From his room, I could see the monitor at the nurses station and could tell they were doing chest compressions. I could see nurses running up and down the hall for meds. I could hear the mother screaming the hallway. And I also saw that child get transported down the hall with a nurse setting on the bed doing chest compressions on this poor little girl. I do not know that girls name and I have no idea what the outcome was. But what I did see will stay with me forever.

Prior to that, I only knew of 1 child that had died from a heart defect. I constantly worry about Mason and my older daughter, Mia. I worry about their health. I worry about their safety. I worry about my health. I WORRY! I don't think that it will change. We have seen what can happen but there are a couple of things that I must keep reminding myself. I feel very fortunate to have been introduced to this new world. Mason and all the heart babies that I have met or read about remind me every day that life is precious. Not everyone has a daily reminder of why to live life to the fullest. The other thing is that I try to remember is that I could have won the lottery multiple times with the odds of these things happening to me or my children. The chances are rare in the big world that we live in but when it happens to you, it doesn't feel so rare.

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