Friday, April 19, 2013

The first 24 hours...

The first 24 hours after Calvin's birth almost seem a blur to me now. I don't remember exactly everything that happened...or maybe I've tried to shut that part out of my brain...I'm not sure. This post might be rough, and I apologize for that. This is still SO emotional for me and it's hard for me to recall and re-live this again...but here it is.

The day of and the night following Calvin's birth were largely uneventful. My in-laws visited for a bit then took my older son Paul home with them for the night (since he obviously couldn't stay at the hospital). My family all got on a plane from California, as planned, to see us. I spent the rest of the day just relaxing in the hospital bed (is that possible?) with Calvin, working on breastfeeding him, taking care of him and walking around the room trying to get myself back in the swing of things. Nurses came in and out all day long to check on him and me and make sure everything was okay. A different OB doctor came to check on us and told me that everything looked good, and we would most likely be able to go home the next day (Friday.) Ryan went back home to do some homework and get some things ready at the house for us to come home. He ended up staying at home for the night, while Calvin and I spent the night at the hospital. Through the night, Calvin slept exceptionally well. Looking back now, he slept almost too well. He had a little trouble latching on to breastfeed- there were a couple instances where I felt like I had to try and force him to me to get him to latch. There were more "attempts" than actual feeds.

The next morning, my in-laws brought my son to visit us and spend some time with his brother. This was the first night I had ever spent away from my son since he was born (he was 21 months old at the time) so I was more than excited to see him. The nurse came and took Calvin to do his final check  up before we were discharged and give him his immunization shots and whatever else she needed to do before we went home. She told me she would bring him right back, in about 15-20 minutes or so. About 30-45 minutes later, my family made it to the hospital (their flight had landed the night before but they didn't get in to town until late night). Ryan took Paul and went looking for Calvin, to see if they could see him in the nursery window. I think at this point, my mother in law was sitting in the room with me. Ryan came walking quickly back into the room, dropped Paul and said "I'll be back." About 5 minutes later, Ryan came back in the room and looked at me and said something to the effect of "The doctor says he's having seizures. They need to take him to another part of the hospital." My heart sank and I felt the blood drain from my face. I looked over at my mother-in-law then back at Ryan and said "What? What do you mean he's having seizures?" He told me he didn't know any more than that, that the doctor had called him over to see what Calvin was doing, and that he had seen him making some jerking movements that the doctor said was seizures. He said the doctor was making some phone calls and would come in to talk to us soon. Ryan then went back to the nursery to check on things. Meantime, my mother in law left the room, so my mom could come in with my 5 year old nephew. I don't think I told my mom what was happening at this point, as I couldn't process it yet. The doctor came in a few minutes later, and I asked my mom to take my nephew out of the room, and she did. The doctor told us that the nurse had seen Calvin make some unusual jerking movements that she was concerned about, so she called him over to watch. He noted the movements and said they were seizures. He told us that Calvin needed to be flown via helicopter to Georgetown University Medical Center in Washington DC. We asked if he needed to be flown or if he could go via ambulance, basically trying to gauge how severe this problem was. He told us it was serious enough that he felt he needed to be life-flighted up to the hospital.

The next few hours were the absolute worst of my life, by far. The time seemed to crawl, but at the same time felt like a blur...this could NOT be happening. This is where it all melts together and I don't remember everything that happened. I went to the nursery where Calvin was...they had him under a warming bed with an IV in his arm and all sorts of cords and monitors on him. They had apparently give him a dose of Phenobarbital to try and stop the seizures, so he was pretty knocked out. The nurses and doctors were on the phone talking about him and explaining what was going on to whomever was on the other line trying to schedule a flight out. Finally they arranged for the helicopter to come, they said in 45 minutes. Ryan went out and told my family what was happening. At some point I remember going out to the waiting room to talk to my family, but I don't remember what was said or what happened. I remember taking my mom (and maybe my dad?) back to nursery to see him, since they hadn't even seen him yet. They were able to spend a few minutes there while we were waiting before the nurse told us she was so sorry, but family members weren't really allowed to be there.

I remember seeing the maternity ward doors open and a bunch of people in flight suits walk in with this big box and all this medical equipment. At this point, I felt like I was going to puke. Ryan put his arm around me and basically held me up. The helicopter doctor talked with Calvin's nurse and the doctor that had called her, then came over to Calvin to do an initial assessment of him. I recall her saying "Ohhh....what are all these spots he has? I hadn't heard about these..." I could tell by the look on her face that she was concerned about them being infectious or something. I told her that they were there when he was born and that the pediatrician that had checked him called them "cafe au lait" spots and he said they would just fade and go away on their own. Then the nurses and doctors and flight team spent the next however long getting him ready and hooked up to their little box cart thing to go on the airplane. We were able to say goodbye to him and they explained that he would be going to the NICU, where it was located and how we could see him. We rushed back to my room, collected our things and got ready to go. We told the flight team we would be right behind them and then they took him away. As they wheeled him away, I just remember burying my face in Ryan's chest and sobbing uncontrollably. It felt so surreal..I felt like my heart was being ripped from my chest. My newborn baby, that I just had in my belly 24 hours ago is now inside a tiny box being ripped away from me so dramatically. I can honestly say that I would not have been able to make it through those hours without Ryan's love and support.

We went downstairs and stood in the parking lot waiting for the helicopter to take off. We could hear it fire up and were just waiting to watch. I was standing in the parking lot behind my car holding Paul when the helicopter started to take off. We were waving at the helicopter and Paul was saying "bye bye brudder! I love you brudder!" and I almost collapsed at that point- if I had not been holding Paul, I would have been a puddle on the floor. I just hugged Paul as tight as I could and broke down. I tried to explain to him that Calvin was just going for a helicopter ride and we would see him soon. He didn't understand...he just waved and said goodbye as the helicopter flew away. Watching my newborn fly away in a helicopter as his brother waved and said he loved him was too much for me.

Everyone loaded up in the cars and got ready to leave. My mom and the rest of my siblings took Paul back with them, dropped Ryan off at our house to get some clothes and his car, and Ryan would head up to the hospital with his dad later. I had my dad drive my car (since I had just given birth 24 hours earlier, I couldn't drive myself) and we immediately drove right to the hospital (2 hour drive one-way with no traffic.) Leaving Paul again was heart-wrenching. He just cried and kept saying "no, no!! Mommy!" and it broke my heart all over again. I felt like SUCH a horrible mom. I had NEVER left him overnight before Calvin's birth and now we were headed into such an unknown...I had no idea how this was going to affect him or myself, or any of us for that matter or how often I would be forced to be away from him. Life as we knew it had changed DRASTICALLY in a few short hours and would never be the same.

Here is the one and only picture we have of all this, taken as they were wheeling him away in his box.


More to come...

2 comments:

  1. Cathleen,
    Thank you for being strong enough to share this very personal and deeply emotional part of your life with others. Even people who may not know you well can appreciate your love and devotion to your sons and husband. You are very brave and I commend you. I know that you have the love and support of many. Writing this blog may not cure Calvin, but it can bring awareness and insight to this very rare disorder. I am sure people tell you often, but I also know it is easy to forget: You are an amazing mother to your boys!!
    I wish you and your family wellness, happiness, and strength.
    Keri Ferguson

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    1. Thank you Keri! <3 I know nothing can cure Calvin, but I just want to put some information and resources out there for someone else who may go through this. I struggled to find ANY information on his syndrome after he was diagnosed, so hopefully someone will read this and get some answers they are looking for, even if its just something that they can take to their doctor and ask about. Looking forward to writing more!

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