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!

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 celebrated....as 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"

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 journey.....it 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. http://noahandjulieroberts.blogspot.com/

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 (http://marygracesummons.blogspot.com/) one year birthdays as well as celebrating her new life with Jesus.

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 know....it 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 everywhere.....my heart, my tummy...everything was broken....one 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 hospital....my mother called and told me she was on her way to the hospital so I knew he wouldn't be alone.....my 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 hours.....plus, 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 home.....plus, 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 him....it 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 questions....you can email us at babyjacobryan@gmail.com. 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 Jacob.....so 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.

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 this.....it 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 brokenness....it hurt so bad.....it 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 together.....it was so strange looking at Jacob and realizing we didn't get to keep him....it 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 them....it hurts so much now just thinking about what we had to do. uh....

Just what I needed...

You know how God just places certain things in your life with perfect timing? A friend of mine sent this link to me and she was used by God in a great way just by obeying the Lord's Spirit.....listen to the Holy Spirit because it goes father than you will ever know.

Check out this youtube video and song...you need like 9 minutes and it is worth it! The lyrics are below too:

http://www.youtube.com/watch?v=ZE33ejdgWIY

Verse 1:
This is my prayer in the desert
When all that's within me feels dry
This is my prayer in my hunger and need
My God is the God who provides

Verse 2:
And this is my prayer in the fire
In weakness or trial or pain
There is a faith proved
Of more worth than gold
So refine me Lord through the flames

Chorus:
And I will bring praise
I will bring praise
No weapon formed against me shall remain

I will rejoice
I will declare
God is my victory and
He is here

Verse 3:
And this is my prayer in the battle
When triumph is still on it's way
I am a conqueror and co-heir with Christ
So firm on His promise I'll stand

Bridge:
All of my life
In every season
You are still God
I have a reason to sing
I have a reason to worship

Verse 4:
This is my prayer in the harvest
When favor and providence flow
I know I'm filled to be emptied again
The seed I've received I will sow

Thank you Shannon!

With Christ on Christmas

Onset of Emotions

Well, I was doing good for a while there with the "Before the Blog" posts and such but I have come to a stand still. January 15th, 2008 was such a ridiculous day and I just haven't been able to get the words organized to relay it all. I have also stumbled upon some emotions that have a difficult onset especially around the holidays. When people ask "How are you doing?" man is that a loaded question....and I am not one to lie but there are those who are actually asking it and then there are those who just would rather hear a lie and go on with things. So for those who don't want to hear the real answer, stop reading.

I miss my son. I miss him more than I have ever before. The 14th of a month hurt badly for the first time. I got a 1st birthday party planner in the mail last week..... a month ago, that wouldn't have hurt.....this month it did. Not because I want a baby to celebrate his first Christmas and birthday.....but because I miss my son Jacob who "would have" been or had...

Happy Holidays, Merry Christmas....easier said than done. Am I a Grinch?....no. I know what Christmas is all about....and Jacob will be in the presence of the One most of us strive to celebrate......and my earthly flesh cannot get past the fact that my arms are not holding my baby boy and it cannot even fathom the One who is......so I struggle. It's what God made me to be..... a mother. It's what God has given and taken from me. And in this, He has given me so much more than I could have possibly even thought to ask Him for......but this process has it's growing pains....and I am in a growth spurt. I don't have time to pretend to be cheery mrs. clause and bring all the children and family and friends great happy Christmas cheer when deep down, I hurt. I can see, now more than ever, how people hide away because the expectation to be happy and celebrate with chocolates and cookies makes people nauseated who have this hurt. Do I have joy?....I sure do.....in the things that matter.....not in presents, chocolates & cookies.....my joy is in the things of the Lord and what He has made me as His child.....and the path He has me on is not all cheery and happy....it just isn't.

So this grief I have has it's tendencies: I want to be with my boys and stare into their smiling faces as much as I can and spend as much time with my amazing loving husband as I can. I want to surround myself with comforting people....not forced hugs from people who don't have a clue where I am at. I want to surround myself with joy.....not false happiness from presents bought at a department store. I want to be encouraged in faith.......not just some story about some big fat guy who comes in a red suit. I want to be around those who miss my son......not because they just know his name, but because they experienced him and they truly know who he was and is and acknowledge his impact on this world.

So, I will get back to "Before the Blog".....I have those days spinning in my head all the time and they will get to the blog. I am just trying to get through these days....one step in front of the other....one at a time.

"...my earthly flesh cannot get past the fact that my arms are not holding my baby boy and it cannot even fathom the One who is."

Where does thankfulness come from?

1 Chronicles 29:13:Now, our God, we give you thanks, and praise your glorious name.

I sat with my boys and we talked about some things that we are all so thankful for. The three of us listed some things, all very important, but every single one revolved around something we were given. As I read the verse above, I wanted to know the context of it (always read scripture in context!...I quoted it below so go ahead and read it yourself). David and the leaders of the tribes of Israel had just GIVEN to the Lord for the furthering of His ministry. Say what?!??! They were thanking God, not only because of what He had given to them, but because of their ability to GIVE! So, I am going to jump to an assumption - If they had not given, they would not have been thankful.

Sit and think about things you are thankful for. Why are you thankful for those things? Is it all because you were given something? What if you haven't been given much? Maybe you had things taken from you....how can you be thankful for that? Thankfulness in these verses came from a heart of "willingly contributing." They were ecstatic to GIVE. I must admit....because of my son being "taken" from me, I am having a hard time being thankful for the hurt I feel. But giving to others by ministering through Jacob's life has made my soul dance with joy! The feeling of giving to others is unmatchable....it is from the Lord.....it is a gift to give. I have never felt regret after giving....in contrary, the feeling that giving results in encourages me to do it more often. But after reading these verses, I realized that I relish the feelings giving brings but I do not turn to the Lord and praise Him for it....I just eat it up and keep it to myself....honestly, I have never uttered anything comparable to what David praised after he and his people gave. I need to do that...I want to do that.

Giving brings about thankfulness....if you do struggle to be thankful, give....give freely because everything comes from the Lord. Take your eyes off of you, give to others, and then praise God for his goodness, dance for joy and "praise His glorious name!"

Christmas is right around the corner, and we all get in the spirit to give then, but this giving 1 Chronicles is talking about is a lifestyle thing, a spiritual thing, a God thing.....not just a season. We should have a heart of thankfulness all the time which means we should be giving all the time. So many of you have given to us with time, talents, thoughts, prayers, finances, encouragement....I have thanked God for that, but have you thanked Him for doing that for us? Does it make your heart sing for joy that you have touched our lives? Be touched. Sing. Praise His name for the ability to contribute to the Fahmer's and then give again and again and again to more and more families as a result of your thankfulness to be able to give.

Tomorrow, when I sit with my boys, on our Nation's Thanksgiving day, I will be sure to rephrase my question. Instead of asking what we have that we are thankful for, I will ask what they have willingly contributed that brings about thankfulness in their heart. And then I pray we can pray the words of David.

Happy Thanksgiving!

1 Chronicles 29:1-18 King David then said to the whole assembly: "My son Solomon, whom alone God has chosen, is still young and immature; the work, however, is great, for this castle is not intended for man, but for the LORD God. For this reason I have stored up for the house of my God, as far as I was able, gold for what will be made of gold, silver for what will be made of silver, bronze for what will be made of bronze, iron for what will be made of iron, wood for what will be made of wood, onyx stones and settings for them, carnelian and mosaic stones, every other kind of precious stone, and great quantities of marble. But now, because of the delight I take in the house of my God, in addition to all that I stored up for the holy house, I give to the house of my God my personal fortune in gold and silver: three thousand talents of Ophir gold, and seven thousand talents of refined silver, for overlaying the walls of the rooms, for the various utensils to be made of gold and silver, and for every work that is to be done by artisans. Now, who else is willing to contribute generously this day to the LORD?" Then the heads of the families, the leaders of the tribes of Israel, the commanders of thousands and of hundreds, and the overseers of the king's affairs came forward willingly and contributed for the service of the house of God five thousand talents and ten thousand darics of gold, ten thousand talents of silver, eighteen thousand talents of bronze, and one hundred thousand talents of iron. Those who had precious stones gave them into the keeping of Jehiel the Gershonite for the treasury of the house of the LORD. The people rejoiced over these free-will offerings, which had been contributed to the LORD wholeheartedly. King David also rejoiced greatly. Then David blessed the LORD in the presence of the whole assembly, praying in these words: "Blessed may you be, O LORD, God of Israel our father, from eternity to eternity. Yours, O LORD, are grandeur and power, majesty, splendor, and glory. For all in heaven and on earth is yours; yours, O LORD, is the sovereignty; you are exalted as head over all. Riches and honor are from you, and you have dominion over all. In your hand are power and might; it is yours to give grandeur and strength to all. Therefore, our God, we give you thanks and we praise the majesty of your name. But who am I, and who are my people, that we should have the means to contribute so freely? For everything is from you, and we only give you what we have received from you. For we stand before you as aliens: we are only your guests, like all our fathers. Our life on earth is like a shadow that does not abide. O LORD our God, all this wealth that we have brought together to build you a house in honor of your holy name comes from you and is entirely yours. I know, O my God, that you put hearts to the test and that you take pleasure in uprightness. With a sincere heart I have willingly given all these things, and now with joy I have seen your people here present also giving to you generously. O LORD, God of our fathers Abraham, Isaac, and Israel, keep such thoughts in the hearts and minds of your people forever, and direct their hearts toward you."

Before the Blog Part II

January 14th, we got to the hospital early, like 6:00am. A few hours later,they got us into a room. They hooked me up to a bunch of machines and Jacob showed no signs of going anywhere other than a soft cervix. We had some issue with resident suggestions as to how to proceed...I have a couple medical doctors in my family and I think this gives me a boldness to ask questions so I took some questions to the attending (who was another one of my amazing doctors) who took things over. But Jacob on the other hand, was putting on a show....he was responding VERY adversely to even the low dose of the induction meds. Now, we were on a deadline to deliver this baby....nothing set in stone, but it would have been nice if Jacob was delivered prior to 6pm due to the Dr's involved. At this time it was 4 pm and things were not looking good for a vaginal delivery any time soon. We tried the drugs again but Jacob's heart kept decelerating at such low doses....he just would not be able to take the stress of delivery. They came in and told us they were getting the surgical room ready for a c-section and they would be back soon to get me to prep for surgery. I was terrified. Jason tried to cheer me up and I did ok....until they wheeled me away from Jason to take me in that room....I lost it....a c-section scared me so bad...the thoughts of people trudging around my wide open body on a table while I lie wide awake behind a sheet....it gags me even now the thought of it all. They brought me in the surgical room. The lights were so bright. The clanging of the nurse tossing the instruments and metal pans. The needle penetrating my spine and sending shooting pains down the entire right side of my body. The counting of the medical instruments and rags as to not leave any behind inside of me. The nurse forcefully suggesting the anesthesiologist get her attending to stick me right. The drugs only taking effect on my left side. The waiting for the drugs to kick in on the right side. The poking with a pin that I could feel but should not have been feeling. The deciphering of pressure verses pain. I would not numb as quickly as they wanted me to. I could still feel it. Jason stayed close to me. The doctors on hold waiting for me to numb so that they could reach inside my womb and take my son from it. Finally, I was numb. They began. And although I could not feel the pain, I felt the tugging. I felt them inside of me. I sobbed the entire time. I am now. I was invaded. I didn't want it to be like this...I had to be ok so that I could be int the ICN with him and go to Rochester for his open heart surgery. I had to be ok. I hated every moment....every moment until I heard his cry. My son had been stripped from my womb and we cried together. I lay strapped to that bed, womb wide open on that table but the chaos melted away for that moment when I heard that cry. All I kept asking was "Is he blue?" He cried some more, Jason went over to meet him. Jacob was not blue. He breathed well. He did not circulate oxygen 100% but he did well. He was much much smaller than anticipated....he had been estimated to be just under 6 pounds while in the womb and he was actually 3 pounds 14 ounces. They wrapped him up and handed him to Jason. I met him. I kissed him. I already missed him! I kept thinking he was blue but they said he was ok. We had our pictures taken while they sewed me back together below that sheet. Jason and Jacob went down to the ICN while they took me to recovery. Jason stayed in the ICN for the next 4 hours and met his newest boy. I stayed in recovery that long. They didn't want me to be in a room on a floor that had babies on it....they were trying to get me onto a different floor so I hung out in recovery. Because we still did not know about the T18, things went as normal. I think back to this and I am shocked. There are so many who had just a few moments with their diagnosed T18 babies after birth and here I am in recovery drugged after surgery for 4 hours not being with my not-diagnosed T18 baby. The cardiologist and ICN fellow came in to tell me some news we just did not want to hear....Jason had already heard because he was there with Jacob while they were examining him. Jacob's heart was much more complicated than anticipated and they were not sure what they could do to fix it...the simplest surgery (as if any open heart surgery is simple) was out of the question and the second series of surgeries was more probable. I asked if the genetic testing was being done so he could have his surgery and it was ordered. I laid there and sobbed for my tiny baby boy who was broken and the anticipated surgeries that would have his tiny body opened on a table multiple times throughout his life to fix him. They took me to my room. I got out of bed and into a wheel chair to go and see my tiny baby boy. There he was in his open air bed. I looked him over. I melted. He was so sweet. He was so tiny. He was so strong. I looked at his feet and noticed they were a little different. I noticed he did not open his hands. I took note of it but it still did not alarm me. He was perfect. He was the sweetest baby I had every laid eyes on. I spent some time with him and then we both rested.



To be continued....

Before the blog Part I

Jacob's due date was January 21st. October 3rd, I went for an ultrasound at the hospital because our tech at our regular office could not get a clear visual of all 4 chambers of our "baby girl's" heart. I went alone because it was just to get a quick picture of the heart and that was it. I sat on the table with that jell on my belly and stared with amazement at the screens in front of me....the life that I was seeing on the screen...wow. I asked her to make sure it was a girl...she looked at me funny and said....those don't belong to a girl! I was very excited about officially finding out the sex. Then she told me about the cysts that were on his brain...we sat and stared at his hand movements to look for any other signs of other "disorders" but he moved everything fine. She too could not get the right picture of his heart. There was a bigger issue here. I was asked to wait in the waiting room while she called up the doctor to take a look at her finding. Jason was at home with the boys (he was getting ready for work and then my Dad was there to stay with the boys until I could get home) and so I called him and told him that he didn't have to worry about any father-daughter wedding day dances (which he was!)....I would get yet another mother-son dance. He said, "WhAt?!?!" and was very excited about our little boy. But then I told him the sex was not the focus. I told him that there was a reason they couldn't get the right picture of his heart....it was because his heart wasn't 'right'. He asked if I was ok, I was, I told him I would get the details and we would talk when he got home from work. I was brought back in the room. The tech called the high risk ob in to look at his heart, my world crashed. He was unofficially diagnosed with complex congenital heart disease. Here I was alone finding out that my worst fear had come true....at the time, an 'unhealthy' baby was my worst fear. The doctor spent some time with me. My trust in the Lord was very evident to him so when the option to terminate was brought up, it was phrased in such a way that he assumed my answer very respectfully and referred me to our baby boy's cardiologist. The tech and doctor left me in the room alone to set up the appointment and I wanted so badly to freak out....I could not believe I was living this (at the time) nightmare, I talked myself down, prayed, held it together and pushed forward totally relying on the Lord like never before. After the appointment, I got into me car, called my sister as I was driving...I realized this was a mistake as I totally broke down and sobbed for a moment but then had to get it together to drive. I did. I drove home just replaying in my mind all that had happened...when you are pregnant, you think about all the things that could happen but you never really thought they would....at least I didn't....I was shocked that it was all real. I got home and my dad was there with the boys. He asked if everything was ok. I just shook my head and with tear filled eyes I said, "No." I didn't know what to do. I remember sitting on the couch wanting to call Jason at work because here my sister knew, my dad knew but Jason didn't. But I didn't want to tell him over the phone while at work and it wouldn't change anything. So I waited. Jason came home that evening and I told him the news. I don't' remember much else of that night but we told the boys of the doctors findings. They were concerned for their baby brother. Because it was news to us that the baby was a boy after being a girl for 6 weeks, Joshua said, "We need to give him a name......I like Jacob." So I said, "I like that name...Jacob it is." This day marked the biggest day of my walk with the Lord second to salvation.....it was a freeing day.....freeing of all control.....it was the Lord's will.

October 5th, Jason and I met with the cardiologist. We went over all the details of Jacob's heart defects. We went through the surgeries that would be in his future. We were "strongly advised" to get an amnio. Jacob became a cardiac patient and surgical candidate with some of the greatest care I have ever witnessed. He had more eyes on him and and more doctors involved...they were all great and they all respected our decision to give Jacob to best possible care we could regardless of genetics. But we were presented with a dilemma. Without the amnio, they would have to wait 5 days after birth to get genetic testing back in order to do the surgery....this meant he had to be strong enough to survive those 5 days until testing came back. An amnio could not be done too late in the pregnancy because the cell reproduction they needed to test accurately needed to be taken prior to a certain date....we had a deadline to decide if we wanted it or not....could he wait those 5 days? We had a month to think about it.

In that month, I met with my new ob (Oh, she was the sweetest doctor...I think of her often as her heart was torn for us after the diagnosis). She went down the list of chromosomal defects linked to Jacob's symptoms...there were quite a few and we talked about characteristics in each one....T18 & T13 were the worst possible outcomes but there were so many others and without the amnio; he was treated as a normal baby with complex congenital heart disease. She offered the amnio, respectfully accepted my decline and then we took a look at Jacob on ultrasound. His cysts had become smaller as anticipated and he looked great aside from his heart. Again, we sat and watched his hands move, we looked at his sweet button nose to see any facial defects were present and he was cleared until next month. At our next visit, his cysts were gone and things looked ok. We had met our deadline to request the amnio and we declined. Our decision was greatly respected among all parties involved...to this day, I would not change this decision.

My appointments continued on a monthly basis but then Jacob's growth became of concern....he was very small and his body was measuring significantly small compared to his head and legs. December 23rd came and we were told to go to our appointment with our bags packed in case of an emergency delivery. I was torn up about the thought of him being so small, so weak and so early. I thought of spending Christmas in the hospital away from my 2 older ones at home. He was cleared again as he grew as he needed and we cleared the holiday ok.

December 28th I woke up at 6:00 am with contractions 5 minutes apart. Because we lived 45 minutes from the hospital, our doctor said that any signs of labor, get to the hospital because this baby had to be delivered in a controlled atmosphere with the right doctors....(I delivered Jonathan in 2 hours so they took this into account and they needed more time than that to get everything in place for Jacob.) They checked me in, told me to walk because I was in no way dilated. We walked ALL DAY. I had more doctors check on me.....it was crazy. My contractions were 3 minutes apart, nothing too bad. At 6 pm, they monitored me and saw the consistent contractions but since there was no progressing, they were going to release me. They left me on the monitor as the nurse went to get the papers together to let me go home. She came back with the papers for me to walk out the door and looked at the monitor which had tracked Jacob's heart beat and on multiple occasions while she was gone those last 15 minutes, he had an irregular heart beat showing great concern of distress at times. That got the release papers in the trash and us admitted. Jacob was under 36 weeks and they didn't want to induce unless they had to. Through the night, contractions got worse (I had to breath through some of them), they had me on an iv to hydrate me and they monitored us every moment. It was a long night....Jacob had everyone on their toes. He had 2 more major decelerations and we were warned at 6 a.m. that if he had one more, they were going to do a c-section. Well he heard that and within the hour, all contractions stopped and he was fine. They monitored him for another 2 hours and everything was as it should be.....except I was EXHAUSTED from laboring for 24 hours, peeing every 2 hours and not sleeping AT ALL! But I was still pregnant which was great.

The week of January 7th, I met with my ob and Jacob's cardiologist one last time before delivery and scheduled an induction (to keep things under control) January 14th and to schedule Jacob's open heart surgery for following week just in case he needed his surgery that soon. Jacob's conditions did not make him a candidate for a c-section....we could still go naturally as his complications were issues that would only effect him once he was breathing outside the womb. We were prepared for a few symptoms such as low circulation causing him to be blue....just things we needed to not be surprised by. We were all on the same page.

To be continued....

Before the Blog

I don't know why, but I think a lot about how we "met" you all after Jacob's birth and diagnosis. "Jacob" started his blog the day he was born and wrote what he observed. While I was in Atlanta at Deeper Still, I remember talking about the blog and one mom commented how there was this mystery behind our blog....it was written from an infants perspective which is different, it was written by either Jason or myself which some enjoyed trying to figure out who, there were events not told about because Jacob was not there or was not born to blog about it. So, for some reason (maybe a mother searching for some details about other T18 journeys, or someone who's baby was given an unfavorable diagnosis after birth, or maybe just to give some more clarity to our story, or just to help me grieve some of my darkest days) I feel like blogging about some events that took place that "Jacob" did not blog about. This will not be short so you may have to take this in shifts...I will be writing in parts.

An email from a Jacob Fan

Here's an email we received from one of Jacob's fans in California. It's good to see his legacy lives on in all of you as well as in us!

"Hello Karen and Jason! I believe this is the first time I have actually sent an e-mail to you. I could not let today go without saying a HUGE thank you. Today is my birthday, and when I woke up this morning, I thought to myself, 'how have I changed this year?' I answered that question to myself and the answer surrounded what little Jacob has done for me. He has made me a better mommy, he has made me notice the sky is a bit bluer, the grass is a bit greener, the San Francisco Bay outside our home is more beautiful. I am not sure what distinguishes Jacob (and your entire family) from others in blogland, I just know all of you have made my life different.
Thank you for a birthday present that you never knew you gave. I have had Jacob's "Fan" picture on my blog since you posted it months and months ago. I look at him every day and realize how wonderful the world really is.
Thank you again!"

Leroy Lessons

A loss may help others find things. Our loss has helped others all over the world find things like Jesus, God, a Creator, time to give an extra hug or kiss, time to just be a family, time to talk longer with a friend, time to take a picture or video, time to just stare into another human's eyes and just be thankful for another breath. With Jacob, I was in the midst of it all, finding so much for myself and for my family. But today we had a different experience on a much much smaller scale that gave me an opportunity to observe true lasting character from my boys without the huge emotional attachment to the situation.

Today began as the average day. I got up, got the boys breakfast as Jason slept a bit longer and I headed downstairs to begin our school day. Jason got up and headed outside whistling...that is odd. Jonathan came and informed me and Joshua that there was a dog! It was a beautiful young boxer. He was very friendly, obedient, sweet and well taken care of. To be cautious, the boys stayed at the door inside while Jason and I played with him a bit to feel him out and be as sure as we could that he was an ok dog for the boys to be around....he was so nice and sweet and very gentile with the boys. Knowing this dog just got himself into some trouble, we took appropriate measures to find his owners...we called the SPCA to see if anyone reported a missing dog, we called the town dog warden, we listened for neighbors who may be calling for him, we took him for a walk around the neighborhood to see if anyone recognized him. Nothing. So, the question came up...."Can we keep him?" I made sure the boys understood that he was not our dog....he belonged to another family and I asked them to think about how they would feel if they lost something and what they would want someone to do if they found it. They immediately took it all to heart. Joshua thought up making "Dog Found" signs to hang up around the neighborhood....I got on the computer to make them up, Joshua grabbed them from the printer, grabbed the tape from the drawer, climbed in the car and chose the stop signs to hang them on. He cared for the dog, as did Jonathan, by playing ball, laying in the grass with him, petting him, changing his water about 40 times, tying to get him to eat, giving him a treat, and sympathizing with him when he whined if we left him alone.....the boys named him just about everything in the book....Rusty, Boy, Max, Watch, Smiley, ....the list goes on.

Although there was a family who was panicked by their loss, their loss helped us find something.....more amazing qualities in our boys. Caution: blunt, seemingly insensitive statement to follow.....The very night Jacob died, as I was putting Joshua to bed he asked, "Can we get a dog now?" Please know that he in no way was replacing his love for his baby brother with a dog.....understand that this question came up well before Jacob was here and while Jacob was with us. But sympathizing with Jacob's time and care here, Joshua realized we had a lot going on and knew we just couldn't do it. But his heart still wanted a dog so he asked that night when to him it seemed as if life just got less hectic ....talk about tugging on heart strings! (smart boy!) But, we turned him down again (heartless, I know). So today, when that dog was in the yard Joshua told Jason that this was a dream come true...that it was a great day to have a dog......he appreciated what he had that moment knowing that it may be gone the next. We waited until about 4:30pm and then we decided to take the dog (named "Watch" at the time) on a walk to see if anyone recognized him yet. We walked to the stop sign (the boys laughed every time Watch lifted his leg to pee on some one's mailbox!) with no success. But on our way back a vehicle slowly approached us. The driver rolled down her window and said, "Is that Leroy?!??!?" Watch went nuts. His owners. My boys faces. He lived just a few houses down from us. The lady thanked us for caring for him, let us know they were so worried about him, and she asked some questions about our day. She had been worried all day about having to tell her little boy that his dog was missing. We introduced ourselves. Then out of the car came her little boy who was the same age as Jonathan. She introduced him. His name is Jacob. My boys were so honored to bring Leroy back to this 4 year old boy who shared the same name as their sweet baby brother. They got to bring another Jacob some joy.

When that vehicle approached me, I knew it was his owners. My heart sunk for my boys. But they just rejoiced....I couldn't believe it. Joshua's dream of a dog, so real, so tangible, but too short. Just like so many of our family, friends and fans can't understand how we can rejoice in our journey with Jacob. Today, in Joshua and Jonathan's hearts, they knew Leroy was not theirs to keep...although he was a dream come true, they knew he wasn't our's. They knew they were on borrowed time and they enjoyed every minute they had with him until they had to give him back to his owner. They understand and learned more about what happened with Jacob than I realize. Nine months ago, in Joshua and Jonathan's hearts, they knew Jacob was not theirs to keep. They knew they were on borrowed time and they enjoyed every minute they had with him until they had to give him back to his Maker. It has made them the boys they are today, appreciating every moment of joy they are given. I am a proud mama. Thank you Leroy for going for a neighborhood walk into our yard and spending the day with us. Thank you Jacob Ryan for being used to build true lasting character in your big brothers.

Jacob's Always With Us

We've made it a point to make sure to include Jacob in all our family things lately... actually it just comes naturally... the boys will never let us forget to include him! So here's some shots of how Jacob got involved in Grampa's birthday party at our house a couple of weeks ago and how he was remembered at Halloween. Each of the boys had a pumpkin to carve. Jacob's has his initials on it "JrF" - and he's represented by his bear and Jonathan wanted his little ducky to come in the picture too!

The boys had a great time carving their pumpkins and being reminded that this is what Jesus does to us. He reaches into us and pulls out the goopy nasty junk and replaces it with a light to shine in the darkness.

Jonathan was Spiderman, of course (again!), and Joshua was a skeleton because one of his favorite LEGO guys in all the world is the skeleton. That skeleton is also a reminder of a story Jesus told. You see, a friend in Delaware gave Joshua a tub of approximately 3,000,000,000,000,000 LEGO's (I may be understating that number) but there is only 1 skeleton who is made up of 5 parts which fall apart pretty easily. And just like the 1 sheep who goes astray, if one piece of "my skeleton" goes missing Joshua will leave the 3,000,000,000,000,000 and find the one. Even if it means sifting through all 3,000,000,000,000,000 to find that one leg to put that skeleton back together again!