War and its aftermath

I have never been to war in the sense of being on the battlefield of military war…but I feel like have been in a war while Finley fought for her life in the NICU.

I had this epiphany on Friday morning as Finley had a check up with the pediatric surgery office and we met her new Surgeon. Always just being in the waiting room brings back a flood of memories. On this day, for some reason it felt more raw than usual. I was watching Finley walk around the waiting room, picking up toys, going up to other children and I just fought the over whelming urge to cry. They were happy tears – tears of relief – tears of thankfulness.  Most days I feel like my shield is thick.. that I can talk about things without the tears coming, but other times, for no reason that I can understand, the tears come very easily and it may just take a mere mention of those scary NICU days to bring them back. I think I have mentioned before that some parents experience PTSD after being in the hospital and thought I don’t think I have that.. I do have times when I feel the scars of that trauma. Sometimes it feels silly to even mention, because I feel guilty for even being traumatized since my child came home, and has been so amazingly healthy.. but that guilt.. we’ve already talked about how that’s not productive.  But I digress.

After the appointment we went to say hello to one of her primary NICU nurses.  While waiting in the office, I had been thinking about Dr Bliss and the nurses that walked thus journey with us and how strangely bonded I feel to them. I know other CDH parents feel the same. We become Facebook and real friends with our NICU nurses. It struck me that it is probably like having been to war with someone. These people were with us during the hardest days if our lives…as we lived at our child’s bedside holding vigil, not knowing what the future held. These amazing people called NICU nurses, not only take care of our precious children and many of them advocate for them as if they were there own, when they disagree with doctors orders or sense something is going on that the doctors aren’t seeing. Before Finley was born, I thought what was the most important thing was finding the right surgeon. Yes, this was a very important piece of the equation- and I am SO thankful that we had Dr Bliss- but equally important were those supporting players. The respiratory technicians and NICU nurses. And the nurses you spend so much time with them and a precious few you become very close and attached to.  For most of us, our CDH journey is one of the most traumatic, difficult journeys of our lives.  We become different people at the other end of it.  I guess it only makes sense that we become bonded to those special people that walk that walk with us.

Then seeing her tear up and thank me for bringing Finley to see her, how it recharged her to make it easier to go back into the NICU to get back into the rooms with those precious little fighters fighting their fight – this just makes me want to cry right now typing this. Such precious souls are those that work in a NICU.  It is pretty amazing how Finley (and all the other CDH survivor babies) are able to provide HOPE for others.  What an amazing gift! I haven’t done anything in this story. I am just the one witnessing and retelling it – God is doing all the heavy lifting here.  I am just in awe sometimes.

Saturday was the 2 year anniversary of her “coming-home from the NICU day.” A day just as precious to us as her birth date and her surgery day.. these landmarks that pass and we remember and give thanks again. 9/29 is now even more special since a dear friend’s baby was born this Saturday as well!

So aside from my deep thoughts of the day – Finley’s check up was routine and just getting acquainted with the new doctor. We did talk about scheduling her X-Ray (to check her diaphragm for reherniation) and a MRCP (MRI to check that pesky bile duct) for October and I do appreciate any prayers that she will continue to not require any additional surgeries.  My hope is that her bile duct remains the same size and is not growing at an alarming rate which would signify a choledochal cyst.

Trusting.

Since I haven’t really posted many photos here.. here are some from our trip to Oahu at the end of August…

It seems only fitting to close with one of the verses that sustains us…

Jeremiah 29:11 “For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future.”

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6 thoughts on “War and its aftermath”

  1. Liz, you hit the nail on the head when you described how these life and death experiences change us forever. I think about it almost every day. Some days are good days, but there are still times when it’s a struggle to understand why.

    I can relate to what your family has gone through and all I can say is thank god for happy endings!

  2. Thank you very much for sharing your experience and lige with all of us whoare following your little angel story. I have a beutifull CDH survivor baby, Emilio is five months old. I have been wirking a lot on accepting that mybaby is healthy unless something happen, that means that I think is not good for CDHmoms just wait that something will happen. I think your little angel is a very beutifull happy and healthy baby and you should enjoy everyday and not to think back on what happen. But look forward. That is rhe adviced that everybody is giving me and I am working on that. God bless you and your family!

  3. The NICU nurses are some of the most passionate and caring people I have ever had the honor of meeting. They not only care for our babies but also us, the parents. I owe them so much, and one day I will have the courage togo back there and say thank you (too hard since Mattiaus is gone). Thanks for sharing and updating us on Finley 🙂

  4. I’m so encouraged by your testimony. Pls pray for my son who is turning 6 n has been diagnosed with congenital choledochal cyst. Thanks

    1. Hi Lydia,

      I will be praying for your son! Which type is it? Are they doing the surgery soon, or waiting? Remember Psalm 46:1-3. Sending love and prayers from Oregon.

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