It has taken me a longtime to sit down and write about our precious gift whom we lost a year ago now. I love to say his name, speak about this little "preacher man" who spoke to so many people, and most of all their hearts... I'd like to share Mathias' story with you...
Our story began at Easter of 1998. We had been married nearly seven years when we found out we were expecting our second child. We prayed for a baby for a long time. Our daughter would be 4 ½ by the time this child was born. My pregnancy seemed to be going well. Except, I was very anxious. I had had complications with my 1st pregnancy, and because of the years in between, thought for the most part, that was why I was nervous. I would have my 1st and only ultrasound at 11 ½ weeks gestation. My pregnancy itself seemed to be uneventful. Much different than my 1st pregnancy. Little did we know what the months ahead would reveal.
My due date came and went with no signs of delivery. From the start I was set on my doctor being there for the delivery. Not wanting just ANY doctor! I was scheduled for an induction on the 16th of December 1998. I couldn't stand the wait anymore, and by Sunday night (13th), I took castor oil, would you believe it never worked . Well not right away. Through the night I was starting to labor. By 5:00 a.m., I was sure that this was really happening. We arrived at the hospital by 8:00 a.m. I went from being assessed, to the possibility of briefly leaving and coming back to be assessed again and then never did leave because it was soon realized our baby was in fetal distress. My OBGYN asked me to sign the forms to have a "possible" emergency C-section. Next thing we knew, I was being prepped for just that. By 10:38 a.m. our seemingly healthy baby, and our lives were forever changed. I was nervous and cried as I was being prepared to give birth to our baby. A C-section was not what I had in mind .
On Monday, December 14th at 10:38 a.m. Mathias Jacob was born. The cord was around Mathias' neck twice. This was what seemed to be our baby's distress, but our worries were only about to begin. Instantly I knew something was wrong with our baby boy. I looked from Mathias to Tim and so on. Nobody was saying anything at this point no-one knew anything was wrong . The pediatrician couldn't find a heartbeat, because of displacement unknown to everyone at the time. Our hospital was not equipped for all that Mathias would need, so a "team" was sent to assess and continue to stabilize our son. Mathias had been intubated and I would finally get to see him approximately an hour after his birth. I was wheeled in to see my baby and I put my finger in his tiny hand. He was already paralyzed. Shortly after this time, we would find out that Mathias had CDH (a Congenital Diaphragmatic Hernia). He was born with a hole in his diaphragm. Actually he was missing the whole left side of his diaphragm, and because of this, there were other things going wrong inside his tiny body. By 8:30 that evening, the team had decided that indeed our son needed ECMO and he would be transported out of province. Tim would fly out the next morning to be with Mathias and I would remain in the hospital for another 3 days. Our 4 ½ year old and I flew out saturday morning to be with Tim and Mathias.
Mathias was removed from ECMO as our daughter and I arrived at the hospital. He had been on ECMO for five days. Seeing our son was wonderful, but very difficult to. I couldn't pick him up, cuddle and nurse him. All the things I planned and dreamed or were not to be. Mathias was now swollen to approximately double his birth weight. We cherished our time spent with Mathias at his bedside. Talking to him, reading stories, singing, playing taped music and of course holding his sweet little hand.
It was difficult leaving our son with "total strangers" to care for him. This was/is so unnatural. I would pump everyday with hopes of someday nursing him, but until then, he would receive my milk.
I was so thrilled the first time a nurse gave me things to DO for our son. Going through this whole experience causes you to feel so detached from your baby. Changing a diaper, cleaning his eyes, wiping his mouth and swabbing inside and sponge baths. All these little things that I was able to do. To allow me to be my baby's mama as best I could. Oh those smells, those precious precious memories!! My first time to hold Mathias would be New Years Eve. What a beautiful time. We took many pictures. For this I am thankful.
Mathias had trouble weaning off the Nitric Oxide, but was doing quite well. He was shunting across a large PDA. Mathias remained on the vent. We were told worse case scenario he would come home trached. This was a shock, and also a devastating time, because of little to no change in both lungs and displacement of Mathias' heart. The Dr's were baffled.
At one month and one day old, we were then transferred back to our province. Mathias remained about the same. No better, and no worse, until January 21, 1999 when he was once again paralyzed. This broke our hearts, as he had been doing so well. Once again Mathias was put on Nitric Oxide. This was a shock and was a devastating time. Because of (displacement) and little to no change in both lungs and displacement of Mathias' heart had the Drs baffled. Many ECHOs had been done and the only other procedure they felt could be done was a cardiac catheratization. After "insisting" we be a part of his case conference, (we were NOT asked or even wanted there) we then understood the severity of this procedure. To Mathias the move to the other room (at his stage) could be fatal and it was very evident by everyone's faces. Yet, he was on maximum support. At this point, I knew in heart for truly the first time that things were not to go much further. We prayed for wisdom, as making the choice to have the cardiac cath. Was no "choice". I remember in these last few days, telling my baby it was okay to go home. We wanted him so desperately to stay, but said it was okay to go. By Wednesday morning (the day after his case conference), Mathais started to drop quickly. We had planned only the day before to dedicate our son to the Lord. We planned to do this not knowing what was to happen that day.
On January 27th we received a call about 7:30 a.m. saying Mathais was not doing well. Once we were at the hospital, we sang Mathias the "Good Morning song" as we had everyday (and also in the womb). We spent time talking to him, holding hands and being a family as best we could. Our pastor's father (a retired pastor) dedicated Mathias about an hour before he went home. We held our little man and for the 1st time our daughter was able to hold her brother. At 11:11 a.m. on January 27, 1999 Mathias went home. We held him and spent as much time together as we could. Mathias died in my arms. I now wish I'd have bathed him myself. We were able to do so much. I'm thankful for all the thing we did and all the memories we do have. We even had castings done of his hands and feet.
When I was still in the hospital, I started to write a letter to Mathias, but had to stop. I felt as though I was writing to a dying baby. Half of my letter I wrote in the hospital, and I finished it when we came home and read it at his funeral. I would love to share it with you
There is so much I wasn't able to share . What I have written, I want to dedicate to our precious son's short life.
Mathias Jacob Dec. 14/98 ~ Jan. 27/99
Loved & missed so much .. gone but never forgotten!!!