Mathias' Story

Mathias Jacob

"For you created my inmost being; you knit me together in my mother's womb. I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well. My frame was not hidden from you when I was made in the secret place. When I was woven together in the depths of the earth, your eyes saw my unformed body. All the day ordained for me were written in your book before one of them came to be."
                                                                                                                              Psalm 139:13-16


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!!!

My sweet sweet precious baby boy. You were a treasure from heaven.

You were prayed for from the start. Your sister prayed every night for a brother or a sister. She would tell the Lord every night, "Thank you Jesus for my mom to have a baby". She prayed with such conviction, that she was even getting desperate enough for her friends to be her brothers or sisters.

I prayed with my hands over my womb, for you to be there. You were truly a gift of God. We never knew there would be any struggles for you once you were born. Many things could have happened along the way, but didn't. The Lord is Good! Your delivery was quite a unique situation, mama only came into the hospital to see if you were truly ready to be born. We prayed for our doctor to be with us, for the nursing staff and had no idea how miraculous each person was to your birth. Many things could have gone wrong, but didn't.

I saw you very briefly before they wheeled you away to assess your situation. Daddy and I were so proud. A son. A brother that Mahalia had told everybody she was having (for months now).

Your first breaths were difficult ones and the doctors were all concerned. You were sent upstairs to have x-rays and tests and see what was truly wrong. Why you were struggling to breathe. Daddy and I wept and our doctor prayed with us and wept too. Nobody had any idea of the complications you would face. You were a strong little boy. I know, it was me you kicked for all those months. An active boy. You were a fighter and we were all so proud of you.

You were wheeled into the nursery (we still didn't know your weight) and they began to work on you and stabilize you. Mahalia got to see and touch you. Daddy and Mahalia were there, Pastor Dave, Auntie Kim & Uncle Lorne, Pastor Paul & Miss Evelyn. Much of the nursing staff and others were praying for us. Everybody was surprised because everything was totally unexpected.

I finally got to see you and this time touch you. You were stabilized (paralyzed) and couldn't move, and I placed my finger in your tiny fist. You were so tiny and yet had tubes everywhere. You have no idea how much attention you had your first hour of life! Pretty special boy.

You were born at 10:38 a.m. and by 3:00 p.m. a "team" came to assess, work on, and transfer you. You were airlifted out of province where you would be put on ECMO for 5 days, and then on day 16 you had surgery to repair your CDH (congenital diaphragmatic hernia) by putting everything back where it should have been and repairing your diaphragm with a patch. The ECMO and repair would be 3 surgeries. You would slowly recover and slowly waken from the paralization. You opened your eyes for the first time on December 30th, only for about 10 minutes. The next day, New Years Eve, I was able to hold you for the first time. This was a long awaited moment.

You had up days and down days. The next time I held you was not until January 6th. So, six days later. Holding slowly became nearly every day, the longest time approximately 3 hours. You loved to be cuddled, even though handling was not something you tolerated well. You had a bright personality, as much facial expressions as time and energy would allow. Oh you could pout and frown. Your eyebrows would tell so much. You often would raise them in curiosity. You grinned at something from your bed, I think a picture Mahalia made for you. You gave me a little smile from your bed and later when I held you and talked to you. At the moment I spoke of bringing you home you gave me a sweet smile. This was January 7th.

Oh honey you truly were a blessing. Many hours spent at your bedside by all of us. You had more not so wonderful days. You remained on the ventilator and you and I were transported back to our home province, where you would be for a week and five days. Daddy held you for the first time on January 17th, you were already a month and 3 days old. Things worsened on January 21st and 22nd and once again you were paralyzed.

You were dedicated to the Lord at approximately 10:00 on Wednesday January 27th and at 11:11 went home to be with the Lord. Mama, Daddy and Mahalia all got to hold you before and after this time.

As hard as this is to say good-bye, I believe the Lord blessed us with your short stay because we nearly lost you the day you were born and twice last week. You had a strong and shining personality. You were a beautiful baby. Absolutely perfect. The only flaws on the outside were your scars of what you had endured. We know you are at peace now and we feel truely blessed to have had a chance to know you. As much as we prayed for you and as fragile and precious as you were, God must have needed you in heaven more than we needed you here. As someone told us, what would heaven be without children.

Mathias, you truly touched many peoples lives and you never knew it until now. Many many prayers went out for you and our whole family. We Love you deeply and you will truly be missed but not forgotten. You are the son we will look forward to seeing in heaven. I never heard you cry, never heard your precious voice, but now you're singing with the angels in heaven.

I love you sweetheart!

Jesus w/ child


Serenaded by Angels

She went to sleep one night
never here to awake again.
But everything was alright
between her & Him.
So she awoke in heavens courtyard
free from pain within.
The angels, gathered round her
and they took her by the hand.

Serenaded by angels
up to the throne.
Serenaded by angels
finally at home.
Surrounded by praises
to the King.
Welcome to paradise
the angels will sing.

Now I close my eyes at night
and I try to imagine that city of brilliant light
waiting for me.
Oh, but my mind cannot conceive.
So I'll continue to dream until I'm transported there.
Then I will be.

Written and Sung by: Kirk Talley
Kirk Talley/I knew Kirk Talley Music


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