Thanksgiving was great this year. A far cry from last year. We had a great time with family and an overall good visit home even though the majority of the family came down with a nasty tummy bug that we thankfully, somehow, avoided. I guess we had already paid our tummy bug dues with a much milder version prior to thanksgiving.
We had much to be thankful for this year and were just thrilled to do all the great thanksgiving traditions with both our boys( even if Cohen napped through Thanksgiving dinner!!!). I forgot my camera( Argh!!) so Chris' dad loaned me all of his photos.....
The boys at play...
With G.G.(great grandmom).... Little Turkey... the Traditional family thanksgiving photograph..... chilling out after the festivities....
I know haven't posted in a while. We've been busy but thought I'd throw a quick update up and give more after Thanksgiving. Here's a few highlights:
We had the tummy bug in our house and both Cort and Cohen ended up with it. All seem better now but Cohen has had a hard time getting over it and getting back to normal. He's lost a decent amount of weight so please pray he'll put that back on easily.
We traveled to the beach this past weekend for my granddad's 80th birthday. He was diagnosed with Cancer this spring and told in june he only had a few weeks to live. He is very sick but praise God we were able to celebrate his Birthday!!!( it's own post and pics to come after thanksgiving)...
Cohen had a geneticist and pulmonologist appt. this week. We're going to do an oxygen trend study next week and if it goes well try stopping his oxygen at night. I'll give more details next week. Just for those who care, Cohen was 22 and 5/8 inches long.
We had Cohen's NICU reunion and got to see lots of people we hoped too ( pics to come as well)
We have so much to be thankful for this Thanksgiving and every day. Last year, Thanksgiving was hard for us. We went home to visit and try to be normal just 3 weeks after receiving Cohen's fatal diagnosis. Prior to thanksgiving I think we were still sort of walking around in a fog and not really returning to normal life -It was anything but normal and felt very strange but we knew we had to dive back in and be a family for Cort and each other and to try to celebrate Cohen's life even then. Last Thanksgiving we wondered how this year would feel and we are blessed for it to be so much different than we expected. We were thankful for Cohen then and are overwhelmed with Thankfulness for him now. We are thankful for our friends and family that have surround us through this past year.
I pray that you all have great things to be thankful for.
...how much I love my family. I mean really, I can't even make it through picking out pictures for the blog without a little smile creeping in as I see the snapshots of all our little days together.
Whether it is running around in the leaves and climbing trees.....
or exploring new things and learning new skills( such as breathing while upright in an exersaucer!!)...
or watching airplanes on top of a car and hanging out at the airport before sending Daddy off on an out of town trip...
even answering questions like, "mommy, What is that?" as my little toddler throws up all over the bathroom floor( after already throwing up all over me and the his carpet!!)....
moments like rocking Cohen to sleep(since for the past few days it's the only way he'll take a nap), reading bedtime stories, having a picnic in the den, playing scrabble with my hubby by the fire, drinking hot chocolate on a cool evening walk, doing potty dances for Cort, or cheering for Cohen as he reaches way out for toys out of his reach..
all of these moments brings smiles to my face and big feelings of love. All of these moments help to make the hard days easier and the long days go by a little too fast!
What moments make you smile and wish your days went by a little less fast?
and vote for my friend, Rebecca Cannon to win her Wii. And while your at, say a little prayer for her - her sweet baby girl - Tess - is due to arrive in just few weeks!!!
Cohen has tonsillitis. He hasn't been eating well since last week and I kept trying to will it away. He was totally acting like he had an ear infection but with having just gotten tubes I was trying to give it time before we went to the doctor. It got really bad this weekend so I took him yesterday after Cort's sweat test to the doctor. No fever or anything - just not eating and waking up a lot at night. It's viral so we just have to wait it out.
* updated: cohen seems all better now - I really think we saw the doctor at the tail end of it all!! ________________________________________________
Cort is such a little trooper. Have I mentioned how much I just adore him?
We got his blood work back and everything came back fine. Yesterday, we did the sweat test for CF and await those results today. Cort handled the test well. He didn't like the 10 minutes of the electrodes doing their thing but after that he was good to go and we had a lot of fun playing around in the hospital lobby and food court. He also thought it was really cool that when they drained his sweat it was blue(from dye). Remembering back to getting his blood drawn he kept saying, "we don't have to get a bandaid."
Our next thing is the gastro doctor - we go on Dec. 1. Hopefully we'll get some answers but I'm also prepared that we might not.
Chris has been out of town and his flight got canceled yesterday too so he's not coming home until later this day. I miss him and am super ready for him to be back.
* Side note - I actually like being at the hospital - it just takes me back to when Cohen was born and those first weeks with him there in the NICU. I remember going there for our special tour with our support counselor when we were pregnant with Cohen to get an idea of what the day would be like with our circumstances and thinking about how I would always have this love/hate feeling about the hospital from there on out - thinking of how our son would be born and die in that exact place. It's a great feeling to be back there - where God did such great work.
We started potty training Cort last Monday. I wasn't super prepared for it but I had been telling him when we used the last diaper in his drawer that he would start wearing big boy underwear. So on Monday when we used the last diaper, Cort said, "Where big boy underwear, now?
Who am I to argue.
So we jumped feet first into potty training. It coincided well with having all this Halloween candy around anyway. We are doing the whole thing - stickers for staying dry, one small treat(gummy bear, jelly bean,etc.) for going and when he earns so many stickers he gets to pick from the treasure box( small dollar store toys and "bigger" candy(halloween loot). He's super into it all.
It's going really well. He has had very few accidents. We haven't ventured out without a diaper or pull up and he does still require prompting. We started out going every 20-30 min and by day 3 were done using the timer and have lengthened the time to about every hour with some asking in between. In the past few days he has gone a few times on his own accord(without me asking or prompting) and is pretty much poopy trained. He has learned to hold it but hasn't quite caught on to telling me he needs to go so the accidents happen if I haven't prompted early enough. He also has been waking up dry from his naps!! We'll see if it all sticks - i know we might be in a "honeymoon" phase.
I have gotten a ton of good laughs out of it all. Here are some of favorites:
On his own, Cort started calling his pee pee - yellow. So he'll run to the potty saying, "We got to get the yellow out"
At some point we told him to drink his milk to help him pee pee because we were sort of flooding him with liquids in the early training stages. So now when he can't go he says, "need some milk - helps get the yellow out"
Upon receiving a treat one time - he held it up moving his finger from his mouth down his body said, "I eat this and it goes down, down, down and comes out yellow or brown!!"
Sitting on the potty one time, "mommy - push a button to help me tee tee."
And there is seriously nothing cuter than his little hiney swimming in the smallest underwear they make. Except maybe this( and I promise he did this on his own):
I can't believe it's already Nov. 7. One year ago today we went in for our 20 week ultrasound hopeful to find out the gender of our new little one and to get a healthy report. We found out we were having another boy and that was super exciting. But the lack of talking in the ultrasound room really should have been our first clue... We had about 20 minutes of thinking we were having a healthy baby boy and then our world really seemed to come crashing down. When we were told that are sons arms and legs were measuring short we were worried but more the kind of worried of "what will our lives be like if he has these special needs?" It honestly never crossed my mind that they would tell us he wouldn't live. The next hours of the day were filled with an hour long 3-D ultrasound,more doctors, and a genetic counselor. There is much about that day that that at first seems blurry to me but as I sit and think it all comes back to me like it was yesterday - what we were wearing, peoples faces.... I remember words like, "fatal, incompatible with life, death bearing."
That day launched us into a year of clinging to God with all that we had. With months of praying for a miracle but also trying desperately to accept God's will, whatever came. We named our son. We loved him. We prepared for his birth and for his death. We were surrounded with love and so was our son. The way people loved him without ever laying eyes on him did so much good for my heart.
As much as I tried not to, I spent a lot of time, thinking about what life would be like after he was born and after he died. I thought about what it would be like to go to stores, friend's houses, church, parties, etc. with this scar on my heart. I knew what it felt like to be carrying a child that is suppose to die - I was living that but it was so difficult to get my head and heart around the afterwards. We picked out birth announcements that would also be appropriate if he did not stay with us, we looked at cemeteries, bought an outfit to bury him in, we met with a funeral director, we bought him a blanket and a stuff animal, a few gowns and outfits if we got to bring him home for a few days. We set up a bassinet and cleaned out a dresser drawer in the guest room. I couldn't bring myself to make a nursery.
We held a concert and prayer service for Cohen to bring a body of believers together to praise God, pray for Cohen, and for Chris to share his music with him. Here is a video we played at the service to introduce everyone to our son.....
We prayed and we prayed and we prayed. And we struggled with rather or not our prayers really mattered but we prayed in obedience and we prayed in desperation. We prayed for a miracle, we prayed for his life, but above all we prayed for God's will to be done and for His glory.
Almost 4 months after our ultrasound and being told our son would never be able to breath on his own, we gave birth to our son, and he came out screaming...
( click back to the first picture to watch his birthday in order)
One year later, I write all of this while my 8 month old son, Cohen, sleeps in his nursery. One year later, I am in a totally different place then I ever imagined before that ultrasound and i am certainly in a different place than I imagined after the ultrasound. What exactly that place is - we may not have figured out yet but we continue to stand in awe of the gift that God has given us.
A year ago today, the doctors told us that our son would surely die. A year ago today, God began to use a tiny little baby in a very big way. We are undeserving and so privileged that God allowed us to be a part of it.
I struggle as I write this, knowing that today, other mothers will be hearing news like we did. My heart hurts for them as they struggle to understand and know what to do. I struggle as I write this, as I know today other mothers look back on this year and do know what it feels like to walk around with that scar on their hearts. I pray for them daily and if God places it in your heart, please pray for them too. I praise God for each of those little lives and the impact they have made.
We are about to live through the four months of the year that we lived through last year with such heavy hearts. I feel giddy with excitement as I think about the days, weeks, moments, and holidays ahead that we get to spend with our sweet son.
There are many unknowns for us and for Cohen as we continue through this journey but a year ago today, I began to cling to some of the truths I know. God is God, He is Good, and He loves me. These truths got me through many days. A year ago today, I began of journey of learning so much about the wonderful God we serve. In a recent Bible Study I have been doing, the author listed some attributes of God...
He is just. He is good. He is holy. He is righteous. He is sovereign. He is Everywhere. He is all knowing. He is unchanging. He is truth. He is merciful. He is jealous. He is love. He is eternal. He is a provider. He is a healer.
My son is alive, but these things are true of God rather he lived or died. I am thankful for this past year and I am so thankful that that is the kind of God we serve.
Cohen turned 16.5 months old today. Some of you are doing a double take, I know. We celebrate it as 8 months because that is how long it's been since his birth, but he has been alive and with us for a full 16.5 months. I'm not one for political debates or agendas but now, more than ever, and on this day in particular I am reminded of how much I value life. The only difference to me that March 5th made concerning Cohen's value as a person is that instead of feeling Cohen kick, now i see him kick and that on that day, God chose to let us keep him here with us. As we approach Nov. 7 - the day we found out about Cohen's fatal diagnosis, I can't help from think of how many other babies, like Cohen were never given the chance to show off their kicking skills to the world.
I do get how yesterday is a great day for American history and I actually am happy that we at least live in a country that has possibly finally broken down some racial barriers and turned at least a little more colorblind. I just wish it wasn't at the sacrifice for human life. I know that's not the only issue at stake in this election, but for me it's a big one. However, I choose today to now support our President elect and to pray daily for him, his family, and the decisions he will be making in the coming months and years. I am reminded and take comfort in that fact that our president is not sovereign but our God sure is.
Today, my baby boy, who by all worldly standards and measurements shouldn't be here - is here. And isn't he beautiful.... Today, my baby boy is here due to the wonderful, miraculous intervention of our mighty God and because He placed it in our hearts to choose life - a choice that was not ours to make in the first place. We are forever grateful that God chose to give in this way - to give us more than just 8.5 months with our son, to allow us to feel him with our hands, to see him with our eyes, to kiss his skin directly with our lips for a another 8 months thus far - and on that day, March 5, 2008 - had God chosen to take Cohen home with him instead - we would be forever grateful for the 8.5 months of life that He granted us with him.
Today and this month, I have experienced things like...
Cohen's obsession with grabbing his feet, blowing raspberries, grabbing out at objects, sitting well with lower trunk support, cuddling for those continuing middle of the night feeds, increasing his solid food intake, breaking 12 lbs( 12lbs 1 oz.), throwing a few consonant sounds into his babble,( like ba), and his increasingly louder volume in his babble(is it totally weird or totally God that the phrase - "He sure has some lungs on him" comes to mind? - praise God!!!)!!!
Today, as we celebrate his 8 month birthday, I feel privileged and blessed to have been part of his16.5 months of life.
Today I celebrate Cohen's 8 month birthday and joyously share it with a fellow miracle -Stellan on his one week birthday.
So - I feel like our family has been on a doctor scavenger hunt - like we have a list of doctors to see before the end of the year and if we see the most we win... so far we have seen collectively( though most have been for Cohen ;) - internist, ruemotologist, pediatrician,developmental pediatriciaon cardiologist, ENT, pulmonologist, geneticist, orthepedic surgeon, opthamologist, and now we are adding a gastro doctor....
For those of you who read this blog before Cohen, you know that Cohen's eating troubles are not our first. Cort had a lot of trouble eating as an infant but grew out of that around a year. What he hasn't ever grown out of it is slow weight gain. As an infant, he would even lose weight. We ran a bunch of tests on him at 15 months and everything came back fine. We all settled in to his weight curve, even though it's WAY off the charts. ( 17lbs at a year, 22.5lbs at 2 years) He created his own curve and stayed on it. Also, his height has always been in the 40-50% without varying so we sort of all decided not to worry about his low weight. Until now. Starting this past winter, Cort began to complain about pooping hurting him( sorry for the TMI) a good bit - we have tried several different things to help with this pain but haven't really been successful. We have talked with the doctor off and on about our concerns and about possibly going to a gastro doctor. At the very end of the summer, I just really felt like Cort was very stagnant in his growth and when we mentioned to the doctor she did a weight and height check. His weight had actually all of a sudden sped up but his height and fallen way off his curve(down to 14% from 45%). It had never done this before so we all agreed to give it a month and recheck it. Well, we went in Friday and his height was further off his curve(13%) and he had lost an entire pound - weighing in at 23.5 lbs at almost 3. So...here's the plan of action:
* see a gastrointestinal doctor * run blood work again( 4 viles of it !!) * complete a sweat test
The blood work is the same we ran at 15 months and is most specifically looking for celiac disease. We did this on Friday and our still waiting the results. Cort is probably never going to want to go back to the doctor after that. He was so brave and never jerked away but they had to do it 3 times to get enough blood and because we had told him he would get a bandaid - in his mind he was doing it just to get a bandaid so the entire time he cried and cried and said over and over - " I don't want a band aid anymore" It was so sad.
The sweat test if for cystic fibrosis and while the chances are quite slim that he has this, we just have to rule it out. This is not scheduled yet.
It will probably take us about 4-6 weeks to get in with the gastro doctor. They will most likely do a scope but we aren't sure what all it will entail.
All this to say that we would appreciate your prayers for Cort. We are pretty calm about it and utlimatley feel at peace about all of this. My gut says that there is nothing serious wrong but we need to be thourough.
We also had a weight check friday for Cohen. Cohen has been waking up twice a night to eat ( he usually wakes up once)for the past 3 nights( yes, including the one when we couldn't feed him before surgery) and we are TIRED...but today we at least found out that its definitely due to a growth spurt - he gained a half a pound in a little over a week!!! He actually broke 12 pounds!! He is 12lbs 1oz!! Way to go up, Cohen!!! The other thing about this that really is a praise is just to see him let us know when he needs more food. Because he doesn't eat well it's easy for me to get worried about how much he eats and if he's getting enough...it's nice for me to see that he'll let me know when he needs more.
On a lighter note, the boys all enjoyed the halloween festivities...
The week before halloween we had trunk or treat at our church. I didn't get a lot of great pics but the boys had fun.
Cort clapping for someone who did a game.
A little pea monster....
Trick or Treating went well. Isn't this the cutest little monster you've ever seen? I love that Cort's favorite part of Halloween was giving the Candy out - even more than receiving it.
Carving our pumpkin: One night they showed the Great Pumpkin Charlie Brown on TV and we got Cort out of bed to watch it and popped popcorn - He loved it!! He was so excited when Chris took him back to read books but then instead of turning off the lights and singing songs, told him we were going to watch a movie!!
A few days ago Cort asked to watch a video - I told him he could and asked what he wanted to watch ( i know, i know, way to open ended of a question for a 2 year old...)
He thought for a few seconds and said, "misserbean"
I wasn't sure what he was asking for so I start think in my head though his videos and can't really match any to what it sounds like he says, So I say, "what did you say you wanted to watch?"
Cort says, "Mr. bean , the silly man."
Mr. Bean is an all time favorite of Chris' and yes, we own the box set.
I'm not sure what I think about my 2 year old knowing who Mr. Bean is and specifically requesting him over Little Einsteins or Peep...
The tubes are in and Cohen did well. He handled the anesthesia with no problem so that's a big praise. The night was a little rough since he couldn't eat in the middle of the night but all things considered not too bad. He is a little grumpy but seems fine otherwise. I'm sure he'll be back to old self by tomorrow.
The biggest surprise of the day is when we walked in to the recovery room and he was taking a paci - he NEVER takes one at home - not since we got home from the NICU. I guess he was sleepy and hungry enough to want it!!! He looked awfully cute- which we had gotten a picture of it.
We're glad to be home( especially since the nurses wanted to keep him) and to have it all behind us!!
Waiting for surgery...
And please click here for a wonderful update on baby Stellan!!!!!
Cohen gets his ear tubes on Wed. at 9am. To follow suit with the post below...
5 ear infections in 4.5 months....getting tubes.... that he would handle the anesthesia well and that the tubes will stop the frequent ear infections. In addition, I would like to ask you to please pray for a sweet little boy, Stellan. He is another one of God's sweet miracles. Doctors told them he would not live to be born and he is scheduled to be delivered tomorrow!!! Stellan has some heart complications but they have already seen God do great work!! Please pray that he would be born strong and healthy and that above all that all God's glory would be evident to all involved.
Welcome to our blog, take a look around. What you see is just a typical family trying our best to enjoy all the blessings God has given us in the midst of everyday life! Two of our favorite little blessings will fill most of the posts of this blog, our 4 year old first born, Cort, and our almost 2 year old, 2nd born, Cohen. Cohen was diagnosed with a fatal form of dwarfism at our 20 week ultrasound and we were told he had no chance of living more than a few minutes to hours at birth. He is a true miracle, a daily reminder of God's power and glory. Pull up a chair, enjoy the ride...we are!!
Thanksgiving was great this year. A far cry from last year. We had a great time with family and an overall good visit home even though the majority of the family came down with a nasty tummy bug that we thankfully, somehow, avoided. I guess we had already paid our tummy bug dues with a much milder version prior to thanksgiving.
