No surgery for Nick this week.

Well... where to begin?

As you know, Nick's surgery that started off on Wednesday, March 25 was switched to Thursday, March 26. Then last Tuesday we get a phone call that his surgeon wouldn't be able to do his surgery until Monday or Tuesday of next week. We finally got a date for Tuesday, March 31 last Thursday... the day he was supposed to have his surgery.

On Friday, Lilly was running a fever of 101.8 in the morning. We kept an eye on her all evening for fevers but nothing higher then maybe 99 degrees. She started getting tired around 4:00 but around 6:00 we couldn't keep her up any longer. I checked her temp and she was 102.4. Matt brought her to the ER where we found out she had Pharyngitis which I guess is not as bad as Laryngitis but could turn into it. Matt asked if Nick could of gotten it and explained about his up coming surgery. They said chances are he didn't get it because we caught it in time.

This is when we decided that Nick and I would go stay at my parents so he wouldn't get sick. I brought Savannah with me for help... not that she was much help since she spend most of her time on the computer, but I dear not tell Matt that. Matt had the other 3 kids with him.

Saturday early evening Nick felt hot so I checked his temp and sure enough he was now running a fever of 101.3. I called Matt up to see if he wanted to go with me to the ER. I picked him up and off we went. Nick had no sign of a sore throat but his ears were a bit pink. They put him on a mild Amoxicillin 1 tsp 3x day. The ER doctor said he would not be surprised if his ears were ok by Monday but to take him in to see his doctor here before we call CG hospital.

Nick was fine since then. The highest his fever had gotten was like 99.5 or something like that. I took him in early this morning to be checked so we had enough time to call CG hospital and other people before it was to late.

Well... it ends up that yes... Nicks ears are ok but now his throat was a bit pink. His doctor didn't think he was going to be able to have the surgery because he was on medication for it. UGH!!! I went home and gave Matt the sad news. On a good note though... he is now 16 lbs 12 oz.

I tried to call CG hospital but kept getting a voice mail. Finally I got someone who said that Bard, the surgeon's nurse was going to call. I told this lady that I needed someone to call me soon because we had hotels we had to call. A few minutes later Nicks surgeon called and asked what was going on. I explained to him everything. He said he was worried about giving Nick surgery with just a slight sign of illness but wanted to call his doctor here to make sure what was going on. He called me back about 10 minutes later and said that his doctor was worried about his throat and would like to see Nick Friday before they set up a surgery.

So... no surgery tomorrow. We are go see his doctor here on Friday at 9:15. While there his doctor here is going to call Nicks surgeon and let him know how Nick is doing. If Nick is fine then he will have surgery on either Monday or Tuesday but more then likely it will be Monday. We made all the phone calls to family and other people that are part of his surgery and told them.

Well, once again we are at a stand still. Lets just hope and pray that Nick gets better by Friday and is able to have surgery hopefully Monday this way Matt doesn't miss another week of work. We were hoping that he would be back to work by next Monday. He has already missed 2 weeks of work (last week and this week) for pretty much nothing and will now be missing next week.

Got to look on the bright side... or I will go crazy and cry lol. I want Nick to be 100% well for his surgery so he doesn't have any other problems after. I also found out he had a good weight gain so maybe he will actually be 17 lbs for his surgery since I know he will probably end up loosing about a pound during anyway.

They changed Nicholas Surgery Date... AGAIN! Ugh!

I know I shouldn't be upset by this but its not like its for another sick child or lack of sleep. I guess if you think about it though... its the same thing.

Anyway... Around 5:30 tonight the phone rings. I'm laying in the recliner with Nicholas on my chest sleeping. Matt answers the phone. I'm thinking/hoping its a call for him to go in for an interview with this other company. WRONG! I hear him say "he had surgery set up for tomorrow but they changed it for Thursday." Then I thought, it must be his work or something. Heck, I wasn't really sure after that.

He gets off the phone kinda upset and says... Well, they changed his surgery date again. I asked him to when, hoping it was just for Friday but nope, it wont be until Monday or Tuesday of next week. GREAT! ugh! That means all the people who have to change plans and Matt missing this whole week of work for Nothing. We were hoping to be home by Tuesday or Wednesday of next week, not be going in then.

I guess what is going on is. Nicks surgeon's 90 yr old mom is having surgery herself on Friday. He will be leaving Thursday night. He doesn't want to do Nicholas Surgery that morning and then leaving him that evening, just in case something happens. I can understand that and respect him for thinking in that way. I can also understand him wanting to be there for his own mother as I would want to for mine and going through the same thing with my own son going through surgery... at some point. Just kinda upset that it now pro longs his surgery and all the people we have to call that took off days of work to be there for him or to help with the kids.

I called my mom to let them know about the change. We were just there today to drop clothes off for the older 3 kids since they would be watching them. They were planning on meeting us on the way to St. Louis and then riding behind them. Since their truck isn't running quite right they were planning on borrowing my brother's truck which means they had to go over to my brothers and let him know they wouldn't be needing it until next week. There was 2 people involved.

Matt called his parents to let them know. His mom took Thursday and Friday off and his step father already had Thursday off. Now they would both have to take Monday or Tuesday off meaning his step father would have to take two days off next week since he doesn't work on Thursdays anyway. There is 2 more people making it 4.

Then Matt had to call his cousin to let them know that they wouldn't be having Lilly tomorrow night but it would be more like Sunday or Monday night. They had plans where people would be helping them out with Lilly making it another set of family involved.

He then called his Aunt to let her know that she wouldn't be having Lilly on Thursday since she was going to be watching Lilly for his cousin while they worked. Now she has to arrange her schedule to watch Lilly then.

On top of that, Matt called the company that is helping us with a hotel room so they can change the dates again. He had it set for March 25-28 but then had to change it to March 26-29. Now it will have to be changed again and OMG I hope he has no problems with changing it.

So, we sit here on stand still not knowing what to do or when exactly it will be. Kids have most of their good clothes over at my parents which they are upset with. Guess we will just have to wait it out and pray nothing happens with Nicholas to pro long the surgery that way.

Prayers for Little Lily!

One of the mommy's in my mommy group sent the group this post about her niece that was just born a week or so ago. When I watched the video, read the story and even looked up what type of heart condition she had, my heart just sank. It hit to close to home, with Nicholas having his own "uneak heart" as Savannah likes to say (she doesn't like to say defect as it sounds to harsh) and then having my own Lillian. I just thought that this family could use all the prayers they could get in hopes that little Lily is able to get a heart transplant before her time runs out.

This is the post she left us...

Hello!

Just a request for prayers.... :)My niece was born last Monday with serious congenital heart defects.... and is in need of a heart transplant if she is to survive. She is in critical but stable condition right now.... Her name is Lily.Lily made the front page of the Toronto Sun newspaper today! :)There is also a short video of her, Kevin, and Melanie on the website. (Kevin is my husband's brother, Melanie is Kevin's fiancee).

http://www.torontos un.com/survive

She's still going strong.... :)

Amy :)

Surgery Date Changed

I got a phone call this afternoon from Nick's surgeon's nurse. She was asking if we could move his surgery from Wednesday, March 25 to Thursday March 26. Something about there being 3 surgeons needing the room or something. I didn't quite understand that part since Nick was scramming (wanting held) and Lilly was bugging me that she wanted her rice crispy treat open. I told her it would be no problem changing the date. Matt was wanting a Thursday anyway so he could work most of the week and only have off 2 days that week and all of the next week. I told her that I did have to call Tom from DSCC who set us up with 2 nights at a hotel.

Anyway, we are to now be there Thursday, March 26 at 5:00 am instead of Wednesday, March 25 at 7:00 am. He will be brought to surgery at 7:00 meaning his surgery will be done 2 hours sooner then before. I think he will be the first surgery for the day instead of the second like planned before.

I called Matt up and told him what was going on. That he needed to make his phone calls to his side and I would be making mine. He said he was just going to take that Wednesday off anyway because chances are I am going to have to pick him up in Decatur anyway and with all the running we will have to do the night before, it would just be easier that way. I had to agree with that one.

I then called Tom up but he was home for the day. I did talk to a lady he worked with and explained to her what was going on. She said that since we had to be there so early with the new date why don't we just keep the hotel room the night before so we can get some sleep. Don't know how much sleep we will get anyway. She is going to have Tom call me on Tuesday when he gets back to work and figure out how exactly we are going to do this.

Next I called my mom to tell her. My dad and her had decided they were going to leave at the same time we were to miss rush hour traffic. They also want to be there when Nick goes into surgery. I don't know if we are going to stay the night before there again like we did last time or just stay at home and meet up with them. That part is still up in the air but I do know the kids will be taking the bus there the day before.

Once done with my calls, which was mainly just to my mom and Tom, I called Matt to update him on my calls. He said he called his step dad, cousin Sandy, and his Aunt Diane.

So, his date has changed. I'm just thankful its only a day longer and they gave us plenty of notice. 20 days left till surgery day now.

A Little Wave!

Awh! I just had to share. I am sitting here doing some scrapbook searching. Nick is on the floor to my right playing with one of Lilly's tea cups. I look over to him and noticed his hand that was above his head, was waving at me. YES! waving at me. I thought maybe he didn't realized he was actually waving at me, maybe he was just trying to scratch his head, as he always does. So I waved back to see if he would respond. Sure enough he waved back. He had Lilly's tea cup in one hand holding it up to his mouth and the other hand above his hand waving back at me every time I would wave at him. Oh it is so adorable to see him respond to something I am doing. In another breath, sad since I know my baby boy is growing up on me, as I knew he would. He will be 8 months old on Tuesday.

Nick has a Surgery Date!

I can't really say today has been a long day, just full of information. Information on his heart that we didn't even know about or expect. I guess I will start with the morning and work my way up. Easier to remember everything that way.

We left the house around 10:00. Dropped the older kids clothes off at my parents since they would be spending the night there after school and taking the bus back to school from there, visited with them for awhile and then headed to Mt. Vernon to pick up our Sears pictures. They turned out pretty dark so remind me next time not to do a dark background. Other then that, they turned out great! The blue sure does POP right out in the pictures though.

I thought we would end up there a bit late but with Matt being a truck driver, he knew quick ways to get to Cardinal Glennon. Got to love truckers lol. We made it there with 15 minute early, checked Nick in and after waiting for about 10 minutes, they called us back. Nick weighed 15 lbs 5 oz just like he did last Friday but it was also on a different scale then any other times. His oxygen levels were 93 which Matt felt was way to high since they want them to be in the 80s.

Anyway, after waiting about a half hour, his surgeon came in and explained everything to us. I guess Nick has two holes in his heart instead of the one we always thought. He has the normal one that every baby is born with but normally closes after a month or two, and then he has the nickel size hole. They said if he didn't have the extra big hole that they would just keep an eye on the other one but since they will be in there to patch the big hole they are also going to patch that hole.

Ok... now I hope I can explain this all right. My lingo isn't all that great so I hope you guys understand what I'm saying. I was so thankful for his surgeon and his picture drawings because it made it so much easier to understand. Anyway... you know how one part of your heart has oxygen blood that flows to your lungs and then from your lungs it goes into the other side of your heart and then from there through out your body. Well he color coded the oxygen side with a blue pen and then the full body flow side in red. I guess that his body flow ventricle that should be attached to the red side of the heart is actually attached to the blue lung side of his heart thus bringing way to much blood flow to his lungs. What he plans on doing is taking advantage of Nicks hole and patching kind of like a tunnel to the ventricle that should be on the red side. With doing this, there is a chance that this patch might end up covering part of his blue side ventricle not giving much room for flow to the lungs. If this happens the hole that they have to cut into his heart, he will try to put a patch there and make a bigger space to allow for the flow needed to his lungs. If he is unable to do this then they are going to have to close up his lung side ventricle and put a tube (from a cows neck) in place higher up the lung side vertical, pretty much making a by pass to his upper lung ventricle. With doing this though, it is a given that Nick WILL have to have surgery in a couple years again to replace the tubing since he will be growing but the tube wont and then about every 5 to 7 years until he is an adult he will have to have surgery to replace this tube. He figures the surgery itself will last about 2 to 3 hours and that his heart will only be stopped for about 45 minutes to an hour max. He gave us all the things that could possibly happen but said that he does surgeries like this pretty often and that the children have done very well after.

Oh, I also forgot to add one more thing... The band that they put in back in October... what he plans on doing with that is cut out the section where the band was and sew the two ends together since the part that had the band I guess would stay small even with the band out. Need to update that in my blogs now that I think about it.

God... I hope I didn't loose you and that you got all this.

I asked him, since Nick has all this going on is he doing good and his surgeon said that he was doing great. He was watching him and was so surprised at how big he was and how well he was doing. He thinks very highly that Nick will be just fine after surgery.

So after the shock of hearing he has two holes instead of one and that there is a chance that he will have to have a tube in place of a ventricle that might cause more surgeries down the line... we were to pick a surgery date. His surgeon suggested waiting until sometime in April after the flu/cold season but understood totally our rush to have it done. He said that he was going on Vacation around March 16 and that it would be fine to have surgery any time after that. He said either March 25 or April 2 would work for him. Matt wanted a Thursday but we wanted the sooner of the dates so it looks like March 25 Nick will be having major open heart surgery. A day after my birthday!

So that's what went on. Matt and I made our phone calls to family and friends on the way home and talked about everything that was said in case on of us didn't understand something or whatever.

Nicholas Heart Cath

Everything went good with Nick yesterday. He was a happy camping and only cried 3x. Even the nurses were impressed at how well he did.

Lets see. Monday, I called Matt to let him know about Pastor Bret calling and Cardinal Glennen calling. This is when he informs me that I would have to pick him up. They didn't have a load that would get him home in time for Nicks heart cath. I quickly got a shower, pinned my hair up, packed Lilly's over night bag and out the door we were at about 1:30. We made it to Decatur at a pretty good time. Right from Decatur we headed for Olney. We were going to stop for dinner first but Matt's cousin, who was watching Lilly, said they had dinner waiting on us. I thought that was very nice of them! I'm not sure when we arrived there. Think it was around 7:00. We had dinner, visited and then their daughter Hannah who will be 11 on Lilly's birthday talked Matt into playing her Wii. He got such a work out but fell in love with it. They played this sports game I guess the system came with. Finally around 10:30 we headed for home.

Once at home, I fed Nick his last feeding and put him to bed. I finally made it to bed I think around midnight, when way to soon, the alarm went off at 3:00. I got up, showered and did my hair. The whole time Nick was awake with me. I woke Matt up around 3:45 to pack the van. 4:15 we were out the door. We made it to Cardinal Glennon at about 6:15. Matt had registered the day before while I was on my way to get him so all we had to do was let them know we were there. We waited for a nurse to come in to start working on him. He was 15 lbs 12 oz. Big weight gain from Friday at the clinic so we figure there is a BIG difference in scales. I think he is more like 15 lbs 5 oz but even that is pretty good.

After they were done checking him we were brought back to his same day surgery room, where we waited until 9:00 before they brought him back. Nick slept most of the time as did Matt and I snooze. We met with the nurse that would be taking care of him for the day, Joanne, lady that would do his anesthesia, the doctor who would be doing his Heart cath and his nurse, Donna, who we have already met a few times before and then also an intern who I figure was in the room during his procedure.

We walked him to where he was going to have his heart cath done. I handed him to Donna, who he had been flirting with the whole way there. He was all full of dimpled smiles. I had an easier time handing him over this time then I did last time but I think its because I knew he would be able to come home with me that night and they wouldn't be cutting into him. All they mainly did was stick some type of IV tube into him and shoot die up to his heart to see where all the die goes.

Once he was in the back, Matt and I went outside so he could have a smoke. This is when we made our phone calls also, that he was just brought back. We went and got some breakfast and then headed back to his room where we found there was another couple. Matt and I were kinda upset by this only for the fact that we were told we would have the room to ourselves and left our laptops and all there.

After sitting there for about 15 minutes a nurse came in and asked if we could kindly leave the room. The other parents were kind of upset that their child would be going through whatever he was having done and the child was not in a very good mood at that. I think the child was about 2 or younger. We grabbed our laptops and went into one of the waiting rooms.

After waiting there for about a half hour we get the call that Nick was in recovery and doing well. They did call us during breakfast to let us know that they had started working on him and he was just fine. A short while later his Card doctor came in and said he stepped in to see him and he was doing good. We would see him in about 2 weeks for Nicks check up and to talk to Nicks Sergent about the surgery. It wasn't much longer after that that the heart cath doctor came to get us so we could see the video of the heart cath.

It was pretty cool. We saw in video, not pictures, the hole in his heart and even the band. The hole is still the size of a nickel and is right in-between the two arteries. The band still looked very good and was doing its job of restricting the blood flow to his lungs, but was starting to get very tight. We were told before Nick even went back that there was a chance he might not have to have the surgery done until he is a bit older which I was NOT to happy about. Now there is talk it WILL be sometime in March because they have to get that band out before it gets to tight. Now I'm not sure how big everything is, but to give a simple example... his artery is say 3 inches wide, where the band is I would say there is only maybe a half inch of open space. As he grows everything else grows but the band of course doesn't. They need to get it out soon.

Anyway, we went back to our room thinking he would be there in about another 15 minutes. We were expecting the other couple would still be there or maybe just to find the room empty... NOPE! not to happen. There was another young couple in there with their 5 month old little girl. I'm not sure why they were there but I know that the father was a pain in the butt. Matt goes outside to smoke and leaves me there with them. The father who looked like he could be no more then 18 or 19 was playing this rap crap from his cell phone and singing along to it. The mother who looked like she was only 16 or 17 was asking to use the cell to call someone but he wouldn't let her. They get into a fight and she ends up using the hospital phone. All this with me sitting just feet away from them. I couldn't wait for Matt to come back. I was like, how dear he go out and smoke and leave me to deal with this couple on my own lol. Thankfully they had left before Nick came to his room and thankfully we got the room to ourselves the rest of the time. Once Nick came back to his room he was all smiles and just laying there so happily. Matt teased that he was all drugged up and sure enough they had gave him something for confer. Nick kept shaking his head no when laying there. It was so cute! I thought maybe it has something to do with the way the medication was reacting to him.

I got to feed him his first bottle of the day and after he ate he slept. He had to keep his leg down and it seemed that he could only do this when I held him. So there I sat, in one position for about 2 or 3 hours while he napped lol. I tried to snooze but couldn't. Matt was able to no problem, but that's a trucker for you lol. They can sleep anywhere lol.

We were told he would have to stay until 6 so around 4:30 we went down to get something to eat. His nurse, Joanne watched him for us and loved being able to hold him. He just talked to her the whole time. It was to cute she said. She said that she isn't supposed to get attached to the children but how could she not Nick.

When we got back to the room, she was taking him off all the monitors and taking the IV out. She was getting him ready to go home so we could leave at exactly 6:00. I called Matt who went out to smoke, that he was getting ready to go and he said he was on his way already. Right at 6 we were out the door. YAY!!! lol

The drive home was LONG. Matt was starting to get tired and we still had to go to Olney to pick up Lilly. I told Matt to pull over and I would drive since I knew the rest of the way anyway. We get to this one town (cant remember which) and come up to an accident. We had to make a detour. This was not fun. I didn't know my way and Matt wasn't sure which road to take. On top of this, it was raining out. I didn't know the roads so I was going so slow.

We finally made it to a town we knew and decided since we didn't have to pick up Lilly after all (we called them to let them know about the accident and they decided to keep her) that we would head to Effingham to look for some computer games for Matt.

Once we were at Effingham Wal-Mart Matt looked at all their games. They only have a very small limit of computer games. We looked at all the other games and decided on getting a Wii instead. He picked up a couple games and I decided to wait on the Wii fit. They were all out. I wanted to get a photo printer but that will have to wait until this weekend. I picked up a light blue shirt for Lilly, blue short for Savannah for family pictures this weekend and an Easter outfit for Nick's dedication pictures.

We made it home around 11:30 and I finally got Nick down for the night at 1:00. I crashed but not enough to where I couldn't hear him. He was up on and off through out the night. We finally got up for the day at 7:30 so I fed him then. He was so hungry. At around 9:00 he feel back to sleep so I went and laid down also. Matt went to pick up Lilly and when he got home we were still in bed sleeping. He woke us up but left Lilly sleeping on the couch. She feel asleep on the way home.

As for the older kids, they were at my parents house the whole time and are now on their way home from school. Can't wait to see them.

So, it was a pretty good LONG day. Nick is doing great and just having a blast playing on the floor with his first Hot Wheel car we bought him while out.