Wednesday, October 28, 2009
Saturday, October 24, 2009
Wednesday, October 21, 2009
Daddy arrived at the hospital right as I was getting back to my room from seeing you. Daddy and I sat down and began to pray for the surgeons hands and wisdom for him to be guided by the Lord. After some time Grand Daddy and Grandma Charlotte came down to the hospital. Daddy had called as many people as he could before he left for the hospital. The prayer chain at church was going and those who Daddy missed Grammy called. You have many prayer warriors lifting you up to our Lord. About a hour after your surgery started Lonnie arrived at the hospital (our neighbor who we have adopted as our children's grandfather). They all stayed until your surgery was over. We sat in my hospital room talking and praying. Time was ticking and they called us from the O.R. twice to let us know all was still going well. Your surgery took a little longer than what they had originally thought it would. It started at 9:30PM and we got the final call from the O.R. at 1:00AM to tell us they were starting to close then. They had you back in the recovery area by 1:45 AM and we all came down to see you. We went in 2 at a time first Daddy and I we stood and looked at all the new machines and gadgets that were hooked up to you. The moment almost seemed surreal.
More tomorrow this one is a tough one...
Tuesday, October 20, 2009
Duodenal Atresia in infants with Down Syndrome
We found out when I was 24 weeks pregnant that Jonathan had Duodenal Atresia and would need surgery after birth. It was detected by ultrasound because of the "double bubble". I also had an excessive amount of amniotic fluid. Both were signs that pointed to him having Duodenal Atresia. We were blessed to know early, this gave us time to meet with the pediatric surgeon before Jonathan was born. The surgeon helped us to understand what all Jonathan would have done during surgery.
Tomorrow back to the journal entries...I'm a little slow at posting most days, forgive me :)
Monday, October 19, 2009
Wow, time flies by!!!
This is Jonathan and Amanda, they are really funny together. From the time Jonathan was a baby until he was about 8 years old Amanda babied him. Giving into his every want, even at times we instructed her not to or for her to get him to do things for himself. She really catered to him, telling us that she wanted him to live with her forever. We continued to tell her that one day he would take advantage of her and he really needed to learn to take care of himself. Well, the day came when Jonathan didn't act very nice to Amanda and she could tell he was getting the best of her by manipulating her. It was a true awakening for Amanda, and from that day on she changed the way she handled Jonathan. She loves him more than ever but now her love is shown by making him learn to do for himself, and not allowing him to act as though he can't. These are the times he runs to Sissy (Elizabeth) for attention and to get his way. Elizabeth just redirects him back to Amanda. Funny thing is now she can at times get him to obey and mind her better than the rest of us. Jonathan is Amanda's buddy meaning she fixes his plate at meals, makes sure he is ready and dressed properly (matching shoes on the right feet) when we are going out, and is his buddy when we are shopping etc. There are a few exceptions to this like when he hasn't been obedient and then he becomes Daddy's buddy...not a good thing. All in all we know Jonathan's tricks inside and out. Amanda makes him toe the line and keep on track. That's how she got her nickname...The Drill Sergeant. She is wonderful with Jonathan and his antics, they do make a good team :)
Saturday, October 17, 2009
October 9th, 1998
This afternoon we have had many visits from friends. They are still been keeping a close eye on your blood and we have been praying for a change to come. Daddy and I came back down to see you around 2:00pm, you looked very peaceful. At this point the nurse said it's just a waiting game. We stroked your hands, arms, and legs while talking to you. Your eyes remained closed but we know that you could hear us. Again I wanted to pick you up, but seeing you I knew would have to be enough for now. Daddy walked me back to my room, and then had to say good-bye for the rest of the day. Daddy had to get back to town to take the girls to the rehearsal dinner and Daddy needed to get his camera stuff ready. (Arthur was photographer before we got married and he was photographing a wedding, our 3 girls were in the wedding) I didn't want to see Daddy leave and he didn't want to leave us. Now I'm sitting here and I feel very alone, yet I know with the Lord we are never alone.
I will never leave you nor forsake you"
Journal entry #5
Change comes fast
October 9, 1998
I was by myself and received a call from Dr. Carr to tell me that your platelet count had come up. He said he was shocked it had taken a turn so quickly, I wasn't as shocked for I knew the Lord had answered our prayers. What I was shocked about was what Dr. Carr said next. He told me that an operating room had been cleared and that your surgery was scheduled for 9:30pm...TONIGHT! He then proceeded to tell me that if we wanted to see you before surgery we needed to come now, because they would be taking you back soon. My first thought was I've got to get down to NICU fast, I couldn't let you go into surgery without giving you a kiss and talking to you. Then it hit me...remember your alone and need to call Daddy first. I knew Daddy wouldn't be home yet so, I paged Daddy (this was in the day of pagers & not as many cell phones). I sat on the edge of my hospital bed praying that your Daddy would call me back fast, that way I could get to you before they took you back. Within a matter of minutes your Daddy called and I broke the news to him. We talked quick on what to do with the girls and how Daddy needed to get here fast. After I hung up the phone I was off to NICU to pray over you and give you my love. I stood by your bed with a million emotions running through my head, I felt like my legs were noodles and may not hold me up. I held onto your bed to brace myself wishing your Daddy was there with me. A minute later Dr. Carr came in and said it was time to take you back...I had to let go, placing you not in the doctors hands but fully in the Lords because He is your protector and healer.
Those who trust in the Lord are like Mount Zion, Which cannot be moved, but abides forever.
As the mountains surround Jerusalem, So the Lord surrounds His people
From this time forth and forever.
James was giving Stephen his gift...
with the new haircut they
sure do look alike now.
They are 23 months apart in
age, but just about the same size.
James is taller and Stephen
built thinker with bigger feet!
I had to put Ruth Ella in the post,
she's really enjoying these birthday parties!
She gave Stephen a Minnie Mouse to
go along with the club house,
she felt like every clubhouse needs
a girl in it. Before we know
it she'll be playing with them to.
In one big breath Stephen blew out the candles.
He had a great birthday.
WE LOVE YOU
Thursday, October 15, 2009
The waiting game
A little before lunch Dr. Carr the surgeon came by to talk about your surgery. They wanted to do your surgery to repair your Duodenal atresia as soon as possible. There is a problem, with your blood. Your platelet count is down and in order to do the surgery they need it to come up for your blood to clot properly. In a few minutes they will start to give you a blood transfusion. This isn't what we expected and I feel like we are watching a movie play out. A movie that we are playing a role in, yet we weren't given a script. We have meet 4 doctors in the past few hours all very nice. With the way they speak, it feels as though they were given the script. It all just seems to be coming so natural for them....but it's not for us! I'm so very thankful they are all so confident, but they are talking about my baby....not fixing a car. Oh how I want to go get you hold you and rock you. I love you so much, now we wait and PRAY!
"Peace I leave you, My peace I give to you; not as the world gives do I give to you. Let not your heart be troubled, neither let it be afraid".
Wednesday, October 14, 2009
October 9, 1998
Watching the clock seemed to make the hours pass very slow. I so badly wanted to come and visit you in NICU, but my doctor wouldn't allow me to. They wanted me to wait until I had Daddy or someone to take me down to see you. Finally around 9:00AM the doctor said I could make the trip to visit you in NICU, Daddy and Grand-Daddy (Arthur's father Hal) were both at the hospital. The walk from my room to the NICU was very long so Daddy pushed me in a wheel chair. I was so excited I was going to see you and feel your warm skin against mine. As Daddy pushed me down the halls it felt like the halls just kept getting longer and as if we were caught in a maze. Then I saw the NICU sign and I felt a great sense of relief, you were just beyond the double doors. From outside the door we used the phone to call into the nurses station to have them open the doors for us to come visit. You are in the second pod (critical care room) in the NICU and there are 4 other babies in the same pod with you. There are 8 beds and your bed is at the back of the pod. When we reached your bed they had a stool for me to sit on so I could see you better. Daddy helped me onto the stool and the 3 of us stool there next to your bed in complete silence for the first few minutes. Your color isn't very good and your were hooked up to all kinds of wires. Daddy and I had taken a tour of the NICU before you were born so we would know what to expect, but now it was different....because now our baby was the one in the bed. We weren't allowed to hold you but we could touch you. I looked at Daddy and he patted and rubbed my back then smiled at me, then I looked to Grand-Daddy and he too smiled. Each one was talking to me and each other about you. Yet, I can't tell you what they said. It's all a blur now, all I can remember is how pitiful you looked and how helpless I felt. I am your Moma and I'm suppose to make things right for my sweet baby. Every fiber of my being wanted to pick you up into my arms, place your head on my chest and snuggle you....taking in your scent. I cried but tried not to, what I wanted to do was scream and cry out to the Lord for strength. We were only allowed to visit you for a few minutes and it wasn't long enough, I wanted more time! Your face, hands, and feet are etched in my mind and it's all I can think about and see. PLEASE, Lord be with Jonathan right now when I can't. Lord, please carry me in this time...for when I'm weak you are strong.
Current thought.....I'm finding as I read my journal it may take longer than a month to share Jonathan's story. So I'm trying to hit the highlights and not all about the full day with visitors and such. Other wise it would take me years to write this story :) Lots more to come. Side note I don't seem to have much time in the day so the post are written late when Ruth Ella is settled... this one being posted for the 14th but it just turned the 15th as I was writting. Good Night!
Tuesday, October 13, 2009
Life with Down Syndrome & many questions?
Jonathan Michael Munck
was born at 12:03 AM
October 9, 1998 (8 weeks early)
With a room full of nurses and doctors ready for you to enter into this world, you made your grand entrance. When Dr. Adair turned you around to allow your daddy and I to see you, I knew it you were perfect. A true gift from the Lord....fashioned by the Potter. So many people had prayed for you and this day over the past several months. We have known for many months that you were going to be special and have Down Syndrome. But I had wondered were they right, could they have made some kind of mistake. So for months I prayed that God would give me a sign of some kind, and that the doctors not have to again confirm that indeed you had Ds. Dr. Adair handed you over to Daddy and I to hold. We were only allowed to hold you a short 2 or 3 minutes before you were taken away to NICU. In those few minutes we looked at you and marveled at our new son our perfect gift, and then it happened. You turned your small face up towards Daddy and I then stuck out your tiny tongue and opened your eyes. That was the sign that I had prayed for all those months...in your face we saw your precious almond shaped eyes and tiny pointed tongue. Daddy and I looked into each others eyes and without words we both knew, you were blessed with a little something extra...giving us more to love. We kissed you and you were taken from our arms to NICU. Even though Daddy and I have known you could have Ds and also you would need surgery it didn't prepare us for the long night after you were taken to NICU....so many questions and we longed to be with you.
Monday, October 12, 2009
Saturday, October 10, 2009
Friday, October 9, 2009
Thursday, October 8, 2009
Wednesday, October 7, 2009
Monday, October 5, 2009
All this to say people with Ds aren't "always happy go lucky"....they are just like you and I with many different moods and short comings. Like everyone else that has ever walked the face of this earth, we were created in HIS image....each one unique!
Sunday, October 4, 2009
All the boys enjoy helping out in the kitchen, and here they were ready to get started making the banana bread.
As you can see from this picture Jonathan was the most excited about the whole hands on baking lesson :)
Jonathan loves to help out in the kitchen. Then there are those times we really don't want his help. So, during those times you will find Jonathan sitting watching. Jonathan just like all our children helps out in the kitchen and has his own chores. The chores he isn't always so crazy about but, helping in the kitchen he's ready at a moments notice. He likes cooking, table prep, cleaning up after dinner, and his favorite the eating ;)
Saturday, October 3, 2009
Jonathan posses something not all of us have....
A radiant SMILE, that's very contagious!
It's very difficult to look at Jonathan when his eyes are sparkling and he is smiling. No matter what your mood, you'll always feel the need to smile back :)
The gift of a smile is truly a blessing given from above!
Wesley has found a cozy spot...Ruth Ella's boppy pillow.
He has pretty much taken it over as his own.
What he likes best about the boppy pillow is on one side it's a great head rest and the other side is just the right spot for him to prop his books....books being Wesley favorite thing in the world! I'm sure he's just breaking the boppy in and getting it ready for his little sister when she takes up reading ;)
Friday, October 2, 2009
we celebrate each new
Jonathan at age 10
can now swing himself!!!
What some see as a mole hill
others view as a mountain,
Jonathan just conquered a mountain
when he learned to swing!