Wednesday, January 21, 2009

1 Year Birthday Memorial Celebration

Sorry it took a week to get you all pictures from our 1st birthday party for Jacob! Some sweet friends remembered us and sent flowers and gifts. Karen said that all the phone calls and deliveries to the house reminded her of the time we had with Jacob... never a dull moment!
Of course we had to have a cake! It of course had Jacob's favorite color yellow on it. On the way to the store to get the cake our car got stuck in the snow and a yellow jeep pulled up and helped push us out! I think God sent that "Angel" just to remind us that He hasn't forgotten us!

We all wrote messages to Jacob on small slips of paper and tied them to balloons to "send them up to him." Here's a pic of Jonathan's message to Jacob:

It was well below zero outside so we had to bundle up and quickly release our messages to the skies!

Wednesday, January 14, 2009

He Celebrated 20+ Earthly Birthdays...

Every Monday or 14th of his life here with us, we had some kind of birthday recognition for Jacob. We knew he wasn't made to have very many years so we celebrated his weeks and months with parties.....some of the weekly (every Monday) and monthly (every 14th) celebration videos are on the side bar but here are some pictures of him on those celebration days or days that we just celebrated. Towards the end, days were difficult for Jacob so our celebrations were a little less glitzy, but he was still with us and we still we pleaded with him to hang in there! But anyways....enjoy seeing how big he got and how we just enjoyed our sweet boy on his "birthdays".

"We miss celebrating with you sweet boy! We will do our best today here.....have a great day with your Creator and all your other sweet friends He has called home. Oh, how we miss you. Your light will never blow out here. We love you sweet boy and miss you. Love, Mama, Daddy, Joshua, Jonathan & all your other earthly family and friends"

Tuesday, January 13, 2009

She Went Home Today

Please pray for Magdalena Grace Robert's family. Magdalena went to be with the Lord today after 5 months and one week of living one of the most lovely lives I have ever followed. I have been able to minister to Magdalena's mother Julie through some of the things we went through with Jacob and the Roberts have been such a blessing to watch on this T18 now continues with their loss. Please visit her blog and read back through to meet this sweet girl and to be able to pray for her family more specifically.

It just tears me up.....she fought and grew and we hoped.....but she will be at a big birthday party celebration tomorrow......for Jacob Ryan's & Mary Grace's ( one year birthdays as well as celebrating her new life with Jesus.

Monday, January 12, 2009

Approached By Jacob Fans

I thought a moment like this would happen sometime but I didn't know what it would be like. Tonight my family gathered at my parents house. I went to a local restaurant pick up alone to get our food and as I stood in line a sweet young woman asked if I was Karen. I told her yes and looked at her struggling to place her as if I should know her. She told me that I didn't know her but that her and her mother, who was there with her as well as her sweet daughter, followed this blog of Jacob Ryan's sweet life and was told of the blog through a friend of my family. Now, there is this special feeling of motherly pride that comes only to us mamas of babies in Jesus' arms.....our babies will never win the little league championship, win first prize at the science fair, graduate with honors from high school and college, marry a godly spouse or raise children in the Lord.....but our babies have left their tiny footprints on hearts for eternity and these moments of hearing and seeing what out babies have done are our championships and graduations. That's all I have....and therefore I have it all. So when this sweet group of three generations approached me and wished me and my family well this week as we celebrate Jacob's birthday, I held back tears. On my drive home I just couldn't stop smiling. I just was so proud of my boy.....I cannot tell him how this made me feel but he was told "Well done" when he got to his eternal home and there is nothing that could please me, his mama, more. So thank you Gail, Natalie & Tessa for approaching me and allowing me to see Jacob's championship moment. And thank you Mrs.H for sharing this blog with those you means more to me than you could possibly know. Thank you to all our fans out there for your continued encouragement and love. This year has been such a work of the Lord and you have all played such a huge part in it. Thank you.

Jacob is the only Champion that Buffalo team will ever see! :)

Before the Blog Part IV

So this is probably the last "Before the Blog" post since this is actually leading into when "Jacob" started blogging.
The rest of our hospital days kind of blend but they were great days spent with Jacob....we embraced his diagnosis fastened our seat belts for the journey we were on. We had to wait a couple more days before we got the official diagnosis and during those days, we did tell family of his likely condition. So many people came to the hospital it was really something.

I didn't stay in my room very much at all....I would go and visit him and fall asleep down there, many times with my head next to his cooking on the warming bed. I remember spending one night up in my room and the nurses got Jason a pull out to stay with me......I cried like I had never cried before....I wept in disbelief of the events that were happening....I sobbed in shear physical and emotional pain.....poor Jason didn't know what to do because he knew I needed to cry because I was just so broken but then he was concerned about the fact that I just had surgery and I was in so much pain....I hurt heart, my tummy...everything was of those moments when it all comes crashing down.

Jacob continued to do well. He was decreased on his IVs and began feeding on fortified breast milk via the OG (feeding tube) and increased well. He stayed on the warming bed for a few days....Jacob was moved to a different bed (I forget what they called it but it had it's own thermostat so that he would begin learning to maintain his temperature). He remained on the monitors. The ICN hospital staff gave Jacob a separate room so that we could have as many visitors as we wanted without it being a problem as well as Joshua and Jonathan in there who were not allowed.....shhhh don't tell. Jacob was eventually in a crib in room air, room temperature where he did fine maintaining his temp. Dr.R came in spent time with us, nurses were amazing, Jacob's lead neonatolgist was phenomenal on so many levels, and my parents cared for Joshua and Jonathan (what a blessing!) while I stayed at the hospital and Jason came is as much as he could.

Before the official diagnosis we stopped all conversations with the doctors about how to treat him.....we just took one day at a time and did what we could that day. Thursday the 17th was the day we were to get the test back. The A.M. came and went and then we were well into the P.M. when the doctor came in and told us the Trisomy 18 was his condition. We talked about the possibility of bringing him home. A nurse said to me "If all he has is a feeding tube, you can learn how to do it and take him home." I thought about that for a few days.

I was still a patient myself at the hospital so I had a room to stay in and they kept me as long as they could and then Friday evening they discharged me. I went home to sleep that night....I stayed up late staring in Jacob's room wondering if he would ever stay in it and then I woke early in the morning panicked, called his nurse who said he was great and had a fun makeover evening and I just felt like I had to to get back to the mother called and told me she was on her way to the hospital so I knew he wouldn't be sister got me back there as soon as she could and I didn't leave again until Jacob was brought home.

Once back at the hospital on Saturday, I began Jacob boot camp. I learned the ins & outs of his care.....I learned about the syringes, the feeding tubes, placement, measuring how much of the tube to put in, residuals, got our own stethoscope, calculating cc's, fortifying breast milk, gravity feeding him.....I took over care of Jacob as much as I could but under the supervision of the nurses. I did have one nurse who made me skip the 3 A.M. feeding so I could sleep (thank you Amy!) but I did what I had to do every 3, as a nursing/pumping mother, I was up anyways! By Monday, I had changed his tube a couple times and done the feedings around the clock. They were confident in Jacob's care and ready to get him, they told us that if we are fearful of caring for him at all, to call or bring him back and we could take it from there. We had the home nursing all set up incase we needed it and we waited for discharge. We did what we had to do to bring him home and give him the best possible life we knew how.....with each child, you have to adjust your life and although Jacob came home with bells and tubes, it was what we had to do as his family to care and love was a privilege.

They discharged Jacob Monday evening about 5:00 P.M. and the hour long drive in a ridiculous snowstorm during rush hour finally brought us to our home where Jacob celebrated his first week birthday and then spent his remaining 131 days. The rest of the story is the blog so reminisce through the old posts as we approach his first birthday on the 14th.....2 days away.

Please feel free to ask any can email us at The blog is written from Jacob's perspective and therefore my perspective as a mother being his at home nurse or Jason's as a father and head of a very special household is hidden behind if you have any questions about Jacob, his story, his care, his doctors, our feelings....anything, please know that it is our honor to minister through Jacob's life and we are an open book. Thanks. God Bless.

Monday, January 5, 2009

Before the Blog Part III

January 15th. I woke up after a night of being drugged and sleeping very well. I had spent some time with Jacob before heading off to bed and once I woke up, I walked behind the wheel chair down to the ICN to see him and visit him again. Jacob was super responsive to Jason's voice the night before so when I was there, he just slept and didn't move about....when Jason was there, he opened his eyes and looked for him and put on a show....typical....I carry him for 9 months and then Daddy gets all the attention! :) I had a great morning checking on my sweet boy who was doing well.....he was on IVs with just sugar water to keep him hydrated, he was breathing room air and hanging out in the warming bed. His O2 levels were low but that was to be expected with his known heart condition. We had a few visitors and my mom came up to see him. A resident geneticist came in as planned to do an analysis to clear Jacob for his surgery. I watched him do all his measurements very quietly and since this was the first contact I had with this doctor, I had difficulty reading his responses to his measurements....he repeated a few and then came the attending geneticist, the attending neonatologist and the residents. They asked my mother to leave because the only ones allowed present during rounds were the doctors and the parents. My mother went to wait in the waiting room. The doctors all gathered around, the attending geneticist, we'll call him Dr. R, who took one look at Jacob, turned to the other doctors with his back towards me and said, "Ok, we have a Trisomy 18 case here." The look on my face must have been something because EVERY doctor that could see my face realized that that was the very first time this diagnosis was mentioned for my son. I stood up, went to my son's side, had the residents dismissed and told everyone that I didn't want to talk about a thing until my husband was there. They all scattered and realized what had happened....a mother's heart was devastated and they witnessed the very moment of brokenness. You see, Jacob's cardiologist had "greatly encouraged" us to get an amnio at 6 months in the womb and his reasoning was because if he told us for 3 months he could fix our boy and then he couldn't due to a genetic disorder we would be devastated......I quickly intently stared into his eyes and rebuttaled "No matter when you tell me you cannot fix my son, if it be now with an amnio or after his birth, I will be devastated." And what those doctors witnessed was not a mother's devastation of realizing her son cannot be fixed after being told he would be, but rather the devastation of knowing that her son will die soon and was not made fixable. This was no different than it would have been 3 months prior. They gave me the phone and I called Jason. He had just arrived at my parent's house to see the boys and my dad ran to the store to get something. I told Jason to "just come to the hospital." He asked if he could wait until my dad got home and I told him to pack up the boys and my mom will watch them here but he had to get there now. He packed up the boys and got there quickly. My mom stayed with the boys in the waiting room and Jason came with me to Jacob's bed side, he asked what was going on. I told him that they are saying it is Trisomy 18. I then witnessed the brokenness of a father realizing he was going to lose his son....Jason's head tuned to the side, he went to Jacob's side and said "Oh buddy." I am not sure what happened right after is a blur. At one point Dr. R and his resident and a nurse came into a family room with us and we talked about what the observations were that led to this diagnosis and what to expect of it. We cried....all 5 of us and we all prayed....Dr.R is a christian. I told Dr.R that we are going to proceed as if he was wrong until the actual test came back and then we would decide what to do. We didn't know what to tell Jacob's big brothers.....oh how they prayed for their little brother to be well and how they were so excited to have him.....and now, to tell them that we didn't know how long he would be with us......and to sit with Jason and see his hurt so still does. The ICN pulled some strings for us and Jacob was put in a portable crib with portable monitors. I called my father to let him know what was going on and that if he wanted to meet Jacob, he should come up to the hospital. They brought Jacob into the private family room to meet and be held and loved on by Joshua, Jonathan, my mom and dad and me and Jason. We spent quite a bit of time was so strange looking at Jacob and realizing we didn't get to keep just was so frustrating as a parent....he was so perfect and so sweet but we wasn't made fixable. We told the boys that we didn't know how much time we would have with Jacob and to kiss him and love him as much as they could now because he was made so special that God was going to take him back and he probably wouldn't grow up with them and all these things and I cannot believe we had to tell hurts so much now just thinking about what we had to do. uh....