Wednesday, September 22, 2010

birtday story

I am, as you can probably imagine having a hard time gathering my thoughts. As much as I can remember through the fog of these hours this is the story of how Gideon came into this world. For those not to interested in the labor and delivery part I’d skip to Friday morning.

Wednesday at 8:00 PM we were admitted to hospital. I remember telling the receptionist at the desk we were there to be induced and we had an appointment at eight. She gave me a quizzical look and asked if I was excited, I must have looked surprisingly subdued for a woman about to have a baby. I opened my mouth and nothing came out but a choked sob. What do you say when the moment when you are supposed to be overjoyed is filled with ache? When instead of biting my nails with excitement in the waiting room I was breathing slowly to what felt like the rhythm of a funeral march. David graciously recued me and answered “our baby is not expected to live for very long”. Faces fell, apologies were muttered. After having to retell our scrip a few times “we understand our son’s poor prognosis, please take some time to review my doctors notes about our birth plan….” I was hooked up to my IV as prep for tomorrow started on the topical medication to get things moving. This medication has to work overnight so I got some sleep on Wednesday night. David got less sleeping on the "bed" next to me across the room.

Thursday morning I was dilated to two so they started the pitocin. I was able to visit with my dad and my sisters in the early drips of pitocin before the contractions took all my attention. I really couldn’t tell you much for the time line though I know my water broke after lunch and I ended up having an epidural not to long after my water broke. Though I am sad that I could not have the natural delivery that I wanted but I know that overall we made the best choice for Gideon. The anesthesiologist was not only merciful but skilled and I was able to lie on my side during the procedure. Shortly after that I had to ask David if I was still having contractions. A moment of levity, he chucked looking at the monitor “oh yes you are”.

I started pushing around 11:45 pm and at 12:28 am Gideon was here.


Gideon was quickly snatched up by the nicu team. It is all a blur but I remember that I could tell he was not doing well breathing and it seemed like an eternity while they were working on whatever it was they were doing. I am not sure I am even ready to know those details yet. The first time I saw him he had a breathing tube in. David sat next to me holding him while they finished taking care of me (I’ll spare the details on that one). We all just watched him. I remember David’s first observation. Gideon you have your mothers eyebrows. There are two of them!

Then I got to hold him. I think I knew that my holding him meant that he would not be with us for long. That was always the plan, be with us if his condition looked bad, treat him if it looked like he could live longer and spend time with us later. I remember thinking how strong he was as I had to hold his head so the nurse could "breath" for him. Our family all came in (after I was covered up of course) and welcomed him into the world. We were so excited he was alive. Excited and hopeful. I told Gideon that if he wanted to meet his puppy at home he was just going to have to breathe on his own.

Then it was just us and the doctors as everybody filtered out.

Though I know many of you are very curious, there are details of this moment I am not ready to share this publicly and might never share. what I will tell you is that it became obvious to me in those few minutes how severe Gideon’s neurological conditions was and how soon he would likely go home to be with his Father in heaven. David told me later that he had known from the beginning. The first part he saw of our son was the part that told him something was very wrong.

David convened the family back to tell them what they had not scene and began to develop a plan to say goodbye. We knew the photographer was coming in a few hours and decided to go ahead and leave him on the respirator for that short time so we could have memories of time alive with us. We also wanted to talk about organ and tissue donation. So David took Gideon to clean him up a little bit in the nicu and I got ready to move on to recovery.

Where I stayed just long enough to drop of my stuff before I too made way to the nicu. My family had to find a quiet space to wait.

I found my two boys there in the nicu. Gideon quiet with David's hand resting on his chest. I almost said tiny but really my son is moose. At 8 lbs 10.3 oz and 18 in long he is a big baby...but to me he still looked so small. I watched painfully as the nurse tried several times to put an IV in his hand and feet. Thankfully I had not had to watch as David had watched other nurses try the same.

Eventually they decided to put his IV in his belly button, which is a longer process and required and x-ray after it was finished to make sure it was placed right. I remember telling the nurse that we were going to take him off the respirator and wondering if it was worth all the work to put in this kind of IV. She reminded me that to even considered organ donating this was a step to take, even if we were going to let him go soon. The nurses promised to look into organ donation for us.

We finally moved up to a room they had for us with family to spend some time with our son. Based on the monitors Gideon was not attempting to breathe at all on his own. There we waited and talked and watched. We were blessed beyond words to have a photographer from now I lay me down to sleep come and help us create memories of our family and of Gideon. There were lots of tears in that room.

Our pastor came and anointed Gideon and we prayed. We met with the representative from gift of hope who let us know that they might be able to use Gideon’s heart valves. We were overjoyed. Our son was going to be someone’s hero.

Then, after everything we needed to get done was done, David and I decided to spend our last few moments with our son just the three of us. I can't think, or I couldn’t think at the time of anything in my life that has been more painful than that moment when took out the breathing tube. We told him we loved him, and that it was ok to go home. We took a few pictures, memories of him without a breathing tube and waited.

I’ve never watched anyone die so I am not sure what I really expected. What I didn't expect was to watch him take slow steady breaths and more slow steady breaths thinking what do we do now? What do you do when you are ready to let go, but go doesn’t happen? We were left to do the same thing Gideon was doing. Breathe. The next few hours are really a blur. I think David and I fell asleep some with Gideon sleeping on my chest. Breathing.

And so continued the advanced course in taking things one step a time. I am, right now, by the way working on my PhD in that particular area of study.

I really should say the next few days were a blur. We were faced with agonizing choices, which in retrospect with all the information were easy choices. I am left to wonder why it was that God put us through that process and didn’t just make it as easy as it ended up being. David has done more research since our decision not to do the procedure and more than one source as verified that encephelceles with microchepaly should be considered inoperable. Confirmation we made the right choice. I was at this point and really to this day continue to be really tired of having to make these kinds of choices. That might be why I still cringe when people ask me to make a decision, even stupid small decisions are a lot for me these days, but I am getting ahead of myself. This, I believe, brings us up to the last note I entered shortly before we left the hospital.

Incidentally it also brings me to the place where I need to take a break. Hopefully soon I will be able to share more about what life is like with our beautiful son.

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