Lost

I know a lot of you guys were wondering if we won the cruise or not for the most romantic story contest. They announced the winner today and I am sad to report we didn't win the free cruise. But that's okay, the person that won had a happy romantic story with a happy ending and a picture of their living child in the picture. My story just didn't have the perfect outcome that people wanted to hear.

On another hand, a nurse asked me "the question" tonight...
Nurse: Hey Ash, Can I ask you a person question
Me: Ummm, sure
Nurse: Did you have your baby?
Me? Yes, yes I did.
Nurse: Awwww!!!! Was it a boy or girl
Me: A sweet little boy
Nurse: Oh how exciting! Congratulations
Me: Yaaaa well thank you very much, I wish I could share more pictures with you but I only have a few since he only lived 3 days. But he was so perfect and only weighed 13 ounces, he was simply amazing.
Nurse: *tears* and hugs

I actually did real good and even kept a smile on my face. Surprise, I know... but I think I was happy because it gave me a chance to show off my sweet Nolan. I won't lie, it's an uncomfortable question. She wanted to know his name and everything. I am so terrified of feeling like he never happened as time goes. So any attempt that someone makes to talk about my son, I accept it as an opportunity to tell people about him. Living or not. I don't get to show off 1,2 or 3 month pictures. I don't get to talk about sleepless nights or colic. But I wish I did. I know people told me my life would change after having a child, and boy that sure is the truth.

Time flying

I have never been so excited to see Christmas stuff in the stores. I always used to roll my eyes and say.. "REALLY?... it's not even Thanksgiving yet" BUT this year, I have never been so happy for it. I just means we are THAT much closer to our time to try again.

Back in June I wrote a blog post about trying to plan things every month until December. It was planned so that we would have something to look forward to every month to help the time pass. But I just realized while trying to find a weekend to go visit Amy before we go on our cruise... I have NO free weekend until the cruise!

Lets see, we have Vegas next weekend, Oktoberfest after that. Val's sons surgery next, then an FSU game in Tallahassee the weekend after that, then off to Cincy for Dads surgery then back to leave for the cruise! Keep in mind I work every other weekend in between. But holy cow is time flying!

So I am crossing my fingers that 2010 is a better year for us. This year has proved to be a hard one. They always say your first year of marriage is the toughest, but I think we have managed quite well given our situation.

So I just have to say I am excited to see the light at the end of the tunnel. I pray every single night that we will be able to bring a baby home, to his/her crib.

So in 4 days, we board a plane to be in my Best Friend Noelle's wedding. I am so excited! It's the first wedding I will ever be in besides my own. I am excited for the dress and all! I love her fiance and I think they are so perfect for each other. I know we are going to have a great time and enjoy every second of it. I do wish that Nolan was coming with like we had planned since the day we found out we were pregnant, but I am going to have fun in his honor. I even got a nautical dress to wear to the rehearsal. I'm stoked!

Oh!.... and I put Nolan's solar light out at his grave. It looks so awesome! I can't wait until my next night off so I can go see it all lit up! I will post pictures as soon as I get them.

Grieving

"Grief may be a thing we all have in common, but it looks different on everyone. It isn't just death we have to grieve. It's life. It's loss. It's change. And when we wonder why it has to suck so much sometimes, has to hurt so bad. The thing we gotta try to remember is that it can turn on a dime. That's how you stay alive. When it hurts so much you can't breathe, that's how you survive. By remembering that one day, somehow, impossibly, you won't feel this way. It won't hurt this much. Grief comes in its own time for everyone, in its own way. So the best we can do, the best anyone can do, is try for honesty. The really crappy thing, the very worst part of grief is that you can't control it. The best we can do is try to let ourselves feel it when it comes. And let it go when we can. The very worst part is that the minute you think you're past it, it starts all over again. And always, every time, it takes your breath away." -Meredith

I think I want to revisit this. It's been 3.5 months since loosing my Nolan and I am learning my new normal. I have bad days & I have 'good' days. Yes, it is still VERY hard to see pregnant women, newborns and ect. But come on, give me a break.. most the time when I see one it puts me back in a place that I should have been or should be.This should not be held against me.

Grieving & mourning Nolan is a lifelong process. Yup, people went a long on the journey with me when it happened, but shortly after life went back to normal for them. In the meantime Chris & I struggle everyday with questions on why this happened. Why aren't we rocking Nolan to sleep right now. Why don't we have a car seat in the backseat? Why is Nolan's nursery a damn memory room? Why are we making solar nightlights for our son's grave?! WHY!?

You think this is easy? You are mad because you feel 'censored' around me, we then go shove it! How do you think I feel living everyday without my son? Imagine your perfect baby being taken away from you... actually don't do that because I still don't want anyone to feel this pain. How do you think I feel having to censor myself from certain situations? Walk ONE day in my shoes and you will have a different perspective, TRUST ME.

This is one of the huge reasons I have come so close to Amy, because she understands. She understands that our bad days are just days when the pain is dull. When you are grieving sometimes you shut people out, become anti social or just plain different. People that are true friends are the ones that recognize this and stay your friend with out making you feel guilty or holding it against you. And when you are ready they are there for you when you when walk back. Does that make sense? Some people who have not been through anything tragic in their lives expect people dealing with grief to act like they are in a Lifetime movie. Real life isn't like that. When you are in your darkest hours, you will push people away. The people who 'cut you slack' and are there when you are ready to reconnect are the ones who will always be there.

I want EVERY single person to know that I am forever THANKFUL that I have you in my life. I am thankful for all of my friends that supported me with the up most amounts of support a girl could ask for. From the kindness of your hearts you reached out at a time I wasn't sure I could get through. I have said it a millions times over and over again how much Chris and I are sincerely thankful for. I wish I had the strength to sit down and write every.single.person a personal handwritten TY card. I have the cards even since 2 weeks after Nolan passed and they are red/blue/white. Perfect colors, but this task as proven to be one of the most insurmountable tasks for me. I have made it through one. ONE. And I hope one day, I can sit down and write to each and every person that held their hand out to us in June. Until then, I am searching for that strength. I should be writing Thank You's to baby shower gifts, not 'baby dying' support cards.

So YES, I am still grieving. I am mourning my son who should have been home by now. I hope you can understand that time has not healed yet and it will be a LONG time until it does. So please, bear with me or try to understand that I am still in the process of mourning my son. Good days or not, it's on my mind every single hour, minute and second. Try living with that. Can you tell I am in a rough spot once again?

"According to Elisabeth Kübler-Ross, when we're dying or have suffered a catastrophic loss, we all move through five distinct stages of grief. We go into denial because the loss is so unthinkable we can’t imagine it’s true. We become angry with everyone, angry with survivors, angry with ourselves. Then we bargain. We beg. We plead. We offer everything we have, we offer our souls in exchange for just one more day. When the bargaining has failed and the anger is too hard to maintain, we fall into depression, despair, until finally we have to accept that we’ve done everything we can. We let go. We let go and move into acceptance."
-Greys Antomy

Words

Sometimes, I have so much going through my head, but I just can't get it into words with out feeling like I am repeating myself for the 10th time. Maybe when I wake up I can verbalize it, but highly unlikely. I think I am getting to the anger part of grieving and it's not pleasant. But then again, there is nothing pleasant about my new life. I just want my Nolan and would do or change anything just to have him back.
Good night.

Clear mind

Through the past few months I have met some really great girls. Girls that have been my backbone and ones that just "get it". I have realized since Nolan I have come to find out who my true friends are. There are just some out there that I look back on now since having a more clear mind and wonder why I am still friends. Why did I even continue to let it bother me back then? I guess I was too busy worrying about everything. Now I look back and think, what the hell...did they REALLY say or act like that. I obviously know not everyone knows how to act towards someone in my position. But for Christ's sake, selfishness is one thing I can't stand now. Some people had said the wrong things..but that is expected and forgiven. But somethings can't be forgiven, at least not right now.

As Amy (Kalli's Mom) said to me tonight:

"um...because we don't have time to listen to peoples bull shit when we are doing the best we can to breath everyday!.....I really don't have the energy to talk to anyone but you right now because I can't take anyone else complaining about their lives or what they are doing"

I will say, EVERYONE (friends, nesties(I wish I could name you all), some family, and strangers) were SO supportive right when everything happened. I don't want this rant to overshadow this. The donations to Nolan, us, flowers, cards and numerous texts and messages were so thoughtful and I am forever grateful. This rant has to do with the few weeks after everything happened at a time the grieving really set in.

The few weeks after were some of the hardest and darkest weeks I had ever been through in my entire life. I guess if I never have gone through loosing Nolan, I never would have put myself in these shoes UNLESS I had a close friend go through it. Then I would and I would be considerate and cautious of their feelings because I am their FRIEND!

Thank you to all you girls that have been SO supportive to me through this journey. The ones who didn't ignore me for your own selfishness. The ones who reminded me how special Nolan is to them still. The ones who let me talk about my true feelings with out harsh judgement. And the ones that I still talk to everyday. Thank you girls.

Being a Mom

Being a mom to me right now is all about sharing Nolan's story and fixing his grave site. So tomorrow I have big plans for his spot. New flowers for fall, maybe a new picture and a night light! Chris isn't too fond of the solar light idea, but its a small one and it will be painted in Nolan's color. I got the idea from Amy (Kalli's Mom). My baby shouldn't be left in the dark every night, should he? Maybe he is scared of the dark, I dunno..but if he is.. I am here to fix it. So I am switching up the pinwheel with the new nightlight. Then I can go visit him to "tuck him in" when the light comes on at night. That's what Amy does every single night, she is such a good Mommy.

So if everything went the way it should have, Nolan would have been home by now. I would be fixing bottles, getting no sleep and holding a baby in my arms. But instead, I am going out to by new flowers, make a nightlight and visit my baby who lives in a Memorial Garden. Not my idea of being a Mom, but it's all I know. Hopefully one day we get to bring a baby home, to his/her nursery and get to be Mom that everyone else gets to be. It's all I want other than having Nolan here with us.

Dear Nolan

I'm as close as I can get to you baby, I am flying high in the sky thinking of you. Yup, they have Internet on the airplane and I keep looking out the window looking out at the sky wondering how close I am to Heaven. I miss you so much and have thought quite a bit about you this week.

I know you kept an eye on Grandpa this week, I am convinced that every little obstacle that turned to be a blessing was you looking out for him. I am so heartbroken that he never got to meet you. I was so excited that he was flying in that next morning to see you. I KNOW for a fact you would have made one big teddy bear cry.

I was hoping to write you a letter sooner, but you know how distracted I was with Grandpa. I sure wasn't expecting that to happen. I know I prayed for some distractions to get me through these next few months, but gosh darn son... not that!

I was able to take your aunts to college this week, that was eventful with in itself. It's insane to think that I am getting that old. It feels like just yesterday that your Dad and I were enjoying our college days. But now I am a graduated, married and a Mom. Your Aunts hung pictures of you all over their rooms and I am sure they won't stop talking about you. They absolutely adore you and miss you SO much!

Well Munchkin, I know you are giving me the strength to get through this month. If you were still here, I bet you would be home with your Mommy & Daddy. We would be loving on you like crazy and enjoying every minute we got with you. I just wish you were here, in my arms and making sweet faces at us. I love you with every ounce of my being Nolan. It's so weird to think that as of last week, you would have been officially born if my body never failed I hate that! I want nothing more than to have you back.

Next week will be hard, we are going to Las Vegas for Noelle's wedding. Sounds like fun, but you were suppose to be there with us. We had all intentions to bring you with us and have Aunt Trisha come be your Nanny. Obviously this was all before you were born too early. But I was so excited to bring you with us and have you meet all our friends. So I should be coming back early in Vegas and not going out, but I promise you I will enjoy myself.

I hope you and Kalli are enjoying Heaven. I look forward to the day I get to hold you once again. Please hold onto Kalli tight, her Mommy is one of my dearest friends. I really think you two brought us together knowing we NEEDED each other more than anything.

So as I look out on the sky, I am thinking of you and wondering what you are doing right now. And wondering what life would be like if you were still here. The days are getting easier with less tears, but the pain is still as sharp as it was 3 months ago. Keep an eye out for that perfect little baby brother or sister that you are going to send us hopefully. I will consider him/her hand picked from you. I love you Nolan and sweet dreams in Heaven.

Love,
Your Mommy

Good Bye UC

Well Dad is FINALLY being discharged to go home. Good Bye UC, you guys have been one AWESOME hospital and have treated my Dad so carefully. In 6-7 short weeks we will be back for a visit and look forward to seeing his Drs and nurses again.

I am so happy the surgery didn't happen yet and they were able to find the PEs otherwise Dad might not still be here. Thank you UC for being on top of your game.

Dad is going home on 7 blood pressure medications, Fragmin shots and Coumadin. Anything to keep his blood pressure below normal and thin his blood. Now he gets to work on preparing for his huge surgery in the beginning of November. It's bizarre that he is on the same shots I will be on when I get pregnant again, so I am getting a lesson in it earlier than I thought.

Now we are just waiting for the pharmacy and surgeons to visit one more time and then we are homeward bound. He is SO happy to see his dog, she sure does miss him.

Tomorrow we have to move both Maggie and Molly into OSU & Newark and it's going to be one LONG day. Dad can't go because he is not allowed to sit in a car that long. So hopefully Mom and I can figure this out since Dad has been the one that knows how to do it. I guess OSU has a huge system set up, wish us luck.

No surgery

Surgery was cancelled at the last minute today. We got up early to get to the hospital in time to spend a few hours with Dad before this surgery. We got up there and the team of Doctors came in to inform us of a new change in plans. I can honestly say we were SHOCKED. The surgery is now put off for the next 6-8 weeks. But he won't have to stay in the hospital until then, thankfully.

Here's the deal:
They found some pulmonary emboli located in his lungs. These are blood clots that are formed in the legs and travel up to the lungs. They obstruct blood flow to certain parts of the lung. In this case, part of Dad's lung has already "died" because it cut off too much blood flow to that part of the lung.
Because of this, it puts extra stress on the right ventricle of the heart which is the reason they can not operate today. They said it's never a good outcome if they were to operate on his heart with these P.E's.

Thus why they are postponing the surgery until he is on a coumadin level that thins his blood enough to go though surgery. Plus they need the existing clots to dissolve into the body first. They already had Dad on Heprin shots, but now they have him on a Heprin IV and they will start coumadin this week. They will discharge him as soon as the levels are correct on his blood work. Then it all becomes a waiting game.

What do I have to say about all this? I honestly think this whole thing is a blessing. I know my Dad's life is going to change. So ya, he has an aneurysm, but they found that by chance. He went to the hospital for chest pain that was totally unrelated to the aneurysm. At the first hospital, they did a CTA of the chest and did not find any blood clots and that's why they thought his pain was related to pleurisy. But at that time, they also found the aneurysm, which is why he was immediately transferred to UC for an urgent surgery.
At the time, the cardiac surgeon did not want to the surgery until he did a diagnostic cardiac cath (which gets pictures of the heart),and felt since he was stable that it was okay to not do the surgery emergently. So when the cath was unsuccessful, we were disappointed that we would have to wait longer. The Dr then wanted a non-invasive CTA-heart to be done in order to attempt to get a picture of the heart before surgery. They wanted these pictures so in case Dad had any other blockages, they could fix those at the same time he had his surgery.

The first time the attempted the scan, Dad was still in a very confused state and the scan was unsuccessful. So when he came out of confusion yesterday morning they immediately re-scheduled the scan. So when he went down to scan, the Dr went to take a quick look at the coronary arteries as they scanned him and saw NO blockages and so he went ahead and scheduled the open heart for today.

Well your probably asking why they didn't catch the PE's on the scan right away...? Well when the Drs took a glance at the scan, they saw no blockage in the heart, they left since that's what they are looking at. But when the scan was sent to the radiologist, they have to take a look at the scan and 'read" it and then report what they see. So at that time, which was probably last night, they immediately call the surgeon and tell them their findings.

I consider it all a blessing that this is happening, it's all coming together and and every road block that has happened and proved to be a reason. Just in the case that if he didn't have the chest pain from the PE, they never would have found the aneurysm. If the original cath was successful, they never would have had to do another scan and never would have caught the PE's before surgery.

And as far as the open heart, Dad thinks it's the perfect time to start a new life. Just the fact he stopped smoking about a year ago was the first start. And YES, he did stop smoking, and it is hurtful to him that people are second guessing this. He did it as my wedding gift to me and he has done SO good. I am so proud of him, if he was still smoking, he would be even more sick right now. Trust me, I know what a smoker's lungs produce and my Dad isn't producing that stuff anymore. The other thing is he is not an alcoholic, because that would put him more risk for delirium and DT's. He chose not to go down that road because he knew that he was at a high risk to become one. He chose to love food and his remote, but not booze.

Not that it's the greatest, but that's why I know this situation is a blessing in disguise. He knows he has to get healthy and start eating better and exercising more to make a good recovery. I know more than anything that he wants to live long enough to see his future grand babies grow up and know he will take any stride to do so. He loves his family more than anything. We have and 8x10 family picture from the wedding in his room (we used it to remind him of his family when he was confused) and every single nurse, RT, X-ray tech or anyone else that walks in the room comments on it, and when they do his eyes light up and says...Yup that's my 4 kids and he smiles so big. Then he names us all and brags about his babies. Its the sweetest thing to watch because it shows how proud he is of us.

He even told us this morning before his surgery was cancelled that "Today is a beautiful day for a new life" He knows that starting over with a "new heart" is a new healthy start and it means a longer life with his family. I am just so proud of him for realizing this and knows that he has a long but rewarding road in front of him.

So for now, he's still in the ICU at UC and will remain there for 3-7 days, but he is in good spirits and he's back to himself. We have been SO happy with the Drs and nurses at UC. He is honestly in one of the best places for this and I have COMPLETE confidence in the decisions they make. I honestly don't think our family can get any more bad news, but at least we can look at it and see it as a blessing... well at least for now we can.

Open Heart tomorrow

Send your prayers, even though I know my little Nolan is going to be Dad's guardian angel tomorrow, any prayers help.

I'm going to get to bed and I will update everyone tomorrow. Surgery is at 10am.

Wednesday

This will be fairly short, it's been another 23 hour day with no sleep. I think Mag and I are so tired we can't even sleep. Now that's bad... we tried taking naps but had no luck.

Dad is doing better with the confusion. The Dr said he is sure it was a reaction to the steroids. He said it usually takes 2-5 days to come out of it. I'm hoping today is going to continue to be a clear/lucid day for him. So far, so good. He is just BORED out of his mind. Only so much you can do from the bed and only so many channels on TV. We try our best to entertain him. Maggie is setting him up on her laptop right now, hopefully that contains him for the next hour before they take him for his scan.

They are going to try to attempt the CTA of the heart again which then they can hopefully schedule is open heart surgery. We are crossing our fingers that he has a good x-ray and the pneumonia is clearing. Then if that's the case they will schedule the surgery for the end of this week. We are crossing our fingers for that one.

One step forward, tow steps back

This will be a short one since we just got to UC and haven't gotten the scoop just yet. Charlie spent all day with him and he was doing SO much better this morning. But a few hours into, he got very confused and agitated once again and was back at where he was yesterday. He was started on a new med, and it is giving him a chance to rest but haven't been able to see if he remembers anything since he has been sleeping since we got here. They did try to get his scan done but he was not holding still so it is not the best picture. He is once again restrained for his safety since he thinks it's okay to try to get up.

I think Maggie will stay tonight with him since Chris's flight leaves at 645am. If anything changes Ill keep you guys updated. Just a reminder, surgery is still postponed until his mental status and pneumonia clear up.

Morning

After a very long and exhausting night with Dad in the ICU, I am happy to report he is getting a little better orientated. Just 2 hours ago he still could not tell us his name, birthday, my name and was VERY confused. Then it was like he just snapped out of half of it. He started to remember a few things and was able to do some tasks on his own, even check his email. WOW.

Now we are just waiting for Charlie to come and switch out so Chris and I can go home and get some much needed rest after last night.

Nothing new

It's 11:14pm and Chris and I are staying in Dad's ICU room tonight. The nurse was VERY thankful I stayed to help out. He's just too confused to not be watched constantly. It all started about 24 hours ago and all day has been an uphill battle for him. If pleurisy, an aortic aneurysm and pneumonia weren't enough, just add the delirium or ICU psychosis to the mix and it's a disaster for him. Can he please catch a break? Poor guy. It has been very rough to see him forget everything and get so frustrated and agitated with it. The surgery is put off for the time being, they are controlling his blood pressure with about 4 medications a few IV drips and they doubled his antibiotics tonight.

Dad is still very very confused and agitated and nothing seems to be working. They think that maybe it's the steroids, pneumonia or even the Ativan they gave him the night before where the cause and he had a possible reaction to them. They were hoping that he would come out of it by earlier tonight if that was the case, but that didn't happen. So they think he is having delirium. It's actually quite common in ICU patients. I deal with it quite often at work but it's so different now since it's my Dad. He doesn't recognize us half the time and thinks its 2006 and he is in Ft Myers. But he can tell you his name, birth date and some other random stuff. They told us to keep reminding him of what day it is, and who is family is and calm him with pictures and let him see the sun out the window and it should help a little. So tonight he told me he was bored, so I busted out the wedding cruise videos and watched them with him. He remembered some, but not all and I had to remind him about a lot. He does remember Nolan though(thank god). He looked at me and said he was so confused by everything and wished he could go back to the time before Nolan. Awwwww, I do too!

They started a new medication and it seemed to calm him down a bit. Can you imagine what he is going through right now? He's been stuck in an ICU bed for 3 days, with alarms and monitors, people telling you what you can and can not do and now being restrained and have to lay on his back? It's hell. I know all he wants to do is get up and move around. He was trying to convince me earlier that the football game was a joke because they were using last years game to make points, BUT he was making the calls as he watched the game so at least he was on top of his football. I really do think he misses his DVR remote, the hospital has nothing on TV...lol

So for the first time in 24 hours, he's finally catching some sleep. I hope this lasts the night, he sure does need it. Mom is doing as good as you can expect her too, she is just overwhelmed with everything, and is in shock that things have changed so drastically in the past 48 hours.

Not good

Dad isn't doing so well. I got a call last night around 11pm from the resident that was concerned with Dad. He said his mental status had changed and wanted to know if he has a history of drinking. Which I informed he doesn't what-so-ever. So that ruled out Dad going through DT's. The resident thought maybe the steroids were causing Dad's confusion and said he was pretty sure it is not neurological in origin.

Fast forward to this morning, Maggie and I drove down to UC to see him since he was suppose to have his big scan this morning. As soon as we got to the room, I noticed they had his hands tied down and was restrained. He got more confused as the night went on and even kicked a nurse. They moved his ICU room closer to the nurses station. His blood pressure is pretty high even with the BP meds. When we got here, he was laying in bed and tied down retrained. He doesn't know who Maggie and I are, and if you ask him where he is, he looks around and says "I give up"

He is very restless trying to pull his leads and gown off. This is so not like Dad, he is very very confused. The Doctor came in and said he thinks it is both a reaction to the steroids and the pneumonia causing the confusion. They stopped his steroids and started new antibiotics and he has hopes he will come out of this in the next 24 hours. His WBC is still elevated also. They are also putting a NT tube down his nose and that goes into his belly to feed him nutrients since he is unable to eat.

The scan is cancelled since he would not be able to lay still at the moment and the nurse said a head scan would be more of a priority at this moment.

I will keep this updated as the day goes through. I am used to seeing patients in the state all the time, but it is SO different when it's your Dad and you know this is NOT HIM.

Update #2

Just got up to UC and Dad is up and sitting in a chair but you can tell his spirits are just down. I think the ICU-itis is kicking in. The chest x-ray from this morning confirmed new pnuemonia. The pnuemonia was most likely already developing before he was even admitted. He was unable to take deep breaths and cough is usual up since he was in so much pain from the plueral effusion for 3 days before he even went to the hospital. So Dr Smith came in and cancelled the open heart surgery that was suppose to take place either tomorrow or Tuesday until his pneumonia clears.

9.13.2009

My pregnancy is officially over today. Today is Nolan's due date, the day I should be in the hospital having Nolan. Even though it ended 3 months ago, in retrospect I have been thinking since then about how I would still be pregnant if my body never failed Nolan. So today will be a rough day, but it's also a day I have been wanting to get passed. But now that it is here, I have mixed feelings about it. Now I am thinking about how Nolan would be getting ready to come home from the NICU and we would finally have our baby at home. But obviously, that is not the case. I just hate this. I was 100% positive that I would write this sweet letter to Nolan today on the blog and have a whole lot to say. But I don't. Not with everything that is going on right now. Maybe I will try to do it while I am sitting up at UC today with Dad.

As for my Dad, he is stable but getting worse. They want to move the surgery to Tuesday because they need to get the CTA on Monday. I don't get the reason for not being able to get the CTA over the weekend, we do them at work ALL the time. This hospital is also a Level One trauma center with 9 ICU's so you would think they would have someone on call. So my goal for today is to try and figure out why they cant do it today. I mean I flew up here thinking this surgery was taking place Fri morning. But now they are trying to move it to Tuesday. It's very frustrating, but I know he is in the best care, especially at UC, so I will go with it.

We just called him this morning, he has a bad IV that now has a possible infection. They are trying to drain the fluid. His x-ray is showing a possible pneumonia bilaterally and he's coughing up some nasty junk. His blood pressure was going up last night and they had to increase his BP meds and put him on a new one. They are trying to keep his BP lower than normal to keep less stress on the aorta. He is in good spirits and he's a pretty freaking cute patient. I just wish our family wasn't going through this, so much has happened this summer and when you think it can't get any worse... it does.

I will post a new update when we get up to the hospital this morning and get the info from the doctor and nurse. Getting info from Dad is like talking to a person who had a few too many cocktails. His pain meds make him pretty loopy.

Thank you in advance for all the prayers you are sending.
Nolan, grant me strength to get through today, I know I needed a distraction this week, but sure wasn't talking about something like this.

Post Cath Update

The cath was unsuccessful because the aneurysm is too large to pass a cath past the aortic root. He tried a normal size cath, then a smaller one. But he didn't have one small enough that he felt safe enough to advance further. He was too afraid to attempt anything else without perfing or tearing it and loosing him on table. So the next plan of action is to get a CTA of his heart since he considers it safer. Which I think this was actually done lastnight at the other hospital, so we are checking on this now.

He said this surgery is HUGE. He said its a 3-5% mortality and he said he HAS to know what his coronary arteries look like before they open his chest up.

I'll keep everyone updated as soon as we get them.

Update #1

Chris, Charlie and I all arrived safely in Cincinnati and a dear friend Kate picked us up and took us strait to University of Cincinnati. Dad is pretty loopy on his pains meds, so he is pretty comical. He seems to be in good spirits so I am happy to see that.

The sharp pain in his chest is more so caused from the pleurisy, an infection of some sort inbetween the pleura of the lungs and it makes it hard to take normal breaths. So they have him on a bunch of pain meds to help him with that. The pain is so bad he seriously watches the clock for the next round of meds. He literally grips the edge of the bed in pain. His white blood cell count was elevated and he has a plureal effusion on the left. But good news is his cardiac enzymes are normal, meaning heart attack wasn't suspected.

The anyuersm they found was more so by chance they think while they were trying to find out what was causing the sharp pain. But it is measuring about 6cm, and they need to do an intervention when it gets close to 5, so that's why he is here. To be specific, it's called an ascending aortic aneurysm. So they will need to do open heart surgery to replace the part of the aorta at the root (the part that pumps the blood directly from the heart) and replace a valve that has been affected from the aneurysm. This surgery is MAJOR and VERY VERYcomplicated, my old cardiac professor told me that this is a surgery you DO NOT want residents doing. You only want the BEST cardiac surgeion in the building. So this is pretty scary. They said he can wait until Monday to do the open heart since he is stable at the time.

He is going in for a routine pre-op cath any hour now. They do this so they can check his arteries incase they need to bypass him when they are already in there for the Aortic repair. They will have the cardiac surgeon in the cath lab at the time in case something were to go wrong.

Poor Dad, all he can keep talking about is how he is going to miss taking his baby girls to college next week to move in. He pleaded with the Doctor to wait, but obviously this is way to serious. It pretty much brings tears to his eyes. It's just sad.

As for me, I am holding up pretty good given the situation plus with what this week means to me already. I don't think it will bother me until I see him post-op on a ventilator, mostly because it's my job to usually manage it. And once again, I am on the other side as family and not a respiratory therapist. It sucks.

Update: Surgery is Monday morning at 7:30 am and is expected to be a 6-7 hour surgery. He is getting the best cardiac surgeon on UC and he will be his first case of the week, which is always nice to have a refreshed surgeon operating on you. Plus he is an OSU grad so it makes my Dad happy.

Alright, cath lab is here to pick him up.

It's worse

This week has proven to be awful for so many reasons.

Nolan, Val's son, and now my Dad. We are leaving here in 15 minutes to get to the airport to catch a flight to Cincinnati. My Dad is being transferred to University of Cincinnati to see the heart surgeon on call, most likely to go in surgery for an aneurysm very close to his heart. He will 95% be going into a very serious surgery.

Please pray that everything is okay. Why does this have to happen?! Especially on the day Nolan died 3 months ago and the week of his due date. Shoot me.

I will keep this blog updated.

Crap Week

This week just plain sucks. I can't say it any better or nicer.

9/09/09- Nolan's very first due date. The due date I put on the video I sent our family to announce our pregnancy. I was so EXCITED to have such a cool due date!

9/11/09- Nolan has been in Heaven for 3 months on this day.

9/13/09- Nolan's official due date that the Doctor changed after our first appointment.

I should be preparing for Nolan's arrival this week. Not mourning him from 3 months ago! I should be 40 weeks pregnant, huge as a house, complaining about being uncomfortable and anticipating the moment we get to rush to the hospital. And none of that is going to happen. I can't believe this week is already here and it's staring me strait in the face and it sucks. I said I couldn't wait for Aug & Sept to be over and just get through it, but I have a feeling I won't feel any better.

I.just.hate.this.

Happy 3 month birthday

Wow, 3 months since I was spending my first night with Nolan in the NICU, 3 months from one of the most scariest, yet most exciting times in our life. I miss him. I can't believe he would have been 3 months old today. This week is a hard one since it's his 3 month birthday, 3 months since he went to Heaven and due date. How will I get through this?!

We usually celebrate on his birthday but we are both working this month so we didn't. But I do promise I have thought about him SO MUCH the past 2 days!

Not a whole lot is going on in our life right now. Just trying to get from one day to the next and counting down the days until we go on our cruise. Our cruise marks the 6 month point and 6 months is when we can try to start a family again. It's bizarre that it's already been 3 months and we are half way there. I should be getting ready to bring our precious Nolan home from the NICU.

FSU Football season started yesterday. As much as we LOVE college football. It was also a reminder of what was suppose to be this season. We were so excited to have a football baby and was already planning all his game day outfits. I remember when we got his due date, the first thing Chris looked up was when the FSU/Miami game was. He was hoping he would be here to see the first big game. So yesterday was that game, we went over to Seniors house for a cookout and some swimming. Then we had to watch the Noles loose. UGH! I just wish Nolan was here for this. Football season just isn't the same this year & I am not enjoying it as much.(One of last years game day parties)

I'll end this with a sweet picture. We had our dog Nola in the car with us when we went to visit Nolan. So guess who got to visit Nolan? Yup, that's right... Nola. (I know their names are very close to each other, and it wasn't done on purpose)

Blood Work Update

So I was tested for a ton of clotting disorders that are closely related to IUGR babies & Preeclampsia last month. I had to wait until I was 6 weeks post partum before she could even test me, so waiting the 6 weeks along with waiting for the results have been nerve racking.

(All the crazy things I was tested for)

I have done A LOT of research on the possible disorders and actually understand quite a few of the popular ones. I was hoping to test positive for one of them because then I know in the back of my head that it could have been a cause to our situation. Plus there are things that can be done prophylactically & therapeutically to help prevent such things happening again.

Not all the blood work is back, but one test did come back positive, one mutation of MTHFR.

It depends on which mutation you have -whether you have two copies of the mutation, or if it's just on one gene. If it's on one gene (heterozygous), it would be the kind that would be less likely to cause blood clotting or other problems. If it is on two copies (homozygous), it raises your potential for problems, such as blood clots and pregnancy problems. Ultimately, the MTHFR is a problem only if it affects your homocysteine levels (and sometimes those levels can change when pregnant), which is what would cause clotting problems. My homocysteine levels were normal, but they could have been elevated while I was pregnant. I guess we won't know until that time comes again.

MTHFR gene mutation is actually very common, occurring in half the population, it just depends on whether it increases your homocysteine levels. There are lots of women with some version of the mutation, and a lot of good outcomes when it is treated with Folgard or other supplementation, and sometimes baby aspirin if it's affecting homocysteine levels. My understanding is we are going to go ahead at treat our next pregnancy with Lovenox shots everyday, so that will be fun. But I will do EVERYTHING in my power to make it healthy next time. Mine is the one copy mutation which is fairly common. She also said my Factor VIII was slightly over the normal so she is going to look more into that.

The appointment was good, and I got the answers I was looking for. My Dr seems very positive about future pregnancies given what we know. She gave us a timeline on when we can try again, so that is exciting that it's when I was hoping to. She is sending me to see a new specialist an hour North of here and have a new Dr look at my case. My poor chart is SO THICK... he will have his work cut out for him.

Top 5!!!

So remember that Princess Romance Contest I entered our story into?

We made it to the top 5!!!!!!
All the entries were read by Gavin McLeod from The Love Boat and he chose his favorite 5. Now it's up to everyone who votes who the winner will be! I am crossing our fingers we get the most votes. It will be the perfect little sign from Nolan.

So here's the link, you can read the other 4 stories and then you can vote!
Our story is the
"A True Princess Proposal, Wedding & Baby"

http://boards.cruisecritic.com/forumdisplay.php?f=606

You might have to sign up for a free cruisecritic account if you want to vote! Thanks in advance for all your support & votes! Cross your fingers! Voting ends Sept 6th!

Nolan's Room

Dear Nolan,
I don't even know where to start. God I miss you, I think about you every single day. I look back on your pictures and it takes me back to the time of indescribable amounts of excitement, joy and well a little bit of anxiety. But I never doubted your strength, you took me by surprise that night you went home to be with Jesus.

I think I have been pretty strong this week. A lot of things have been going on. Well first off, I went back to work and as you know I had a lot of anxiety about it. But that's also why I took extra time off so I was prepared and mentally ready. And quite honestly, I have surprised myself the past few days. I know you gave me strength the other night to hold in my emotions while with drawling life support on a young adult who was was diagnosed with brain death, and I know you gave me that extra push to go hug that mother. It was never something I could see myself doing, but it was something I felt I needed to do, I know her pain more than anyone else at that very moment. I watched his heart rate slowly go down to zero, just like yours and as hard as it was, I felt your strength with me. I will never forget when that RT came and hugged me that night in the quiet room, and even though she may not have ever lost a child... it was the hug that meant more than anything. It showed me how much she cared about you.

We also finished your old nursery tonight and it looks so perfect Nolan. I stood there in the middle of the room and just got so sad thinking about how it's not the same without a crib and changing table. I'm heartbroken I have a nursery for my son that you will never see. But I can tell you, it's absolutely perfect. I am so happy we didn't change the color of the room after we got home from the hospital. I will ALWAYS think of that room as YOUR room, even when you have a little brother or sister, it will still be your room. We also hung your nautical chart, and it looks awesome. But today was also hard putting away all your perfect little clothes I started collecting as soon as we found out you were a boy. I didn't look at any of them, I just quickly threw them in a tote and shoved it in the closet along with your bedding and mommy's maternity clothes. I hope we get to use all them again sometime in the future.

I love you perfect little boy, I can't even begin to express how much I miss you because there are no words that can describe the heartache. I wish I was folding your clothes and making last minute arrangements for your homecoming vs making a memory room. It just isn't fair, and I hate it! This is about the week you should be coming home from the NICU and we should be starting our life at home as a family, but instead it is so different.

I love you Nolan and I hope you like your memory room. It's now a place we can go sit in (as soon as we get the big chair) and just be with you in spirit.

Love you so much,
Your Mommy