Could things get any worse???

Ok... Took Nick and Lilly in for a check up this morning. Nick is getting better but they are wanting to hold of a bit longer for his surgery since he still has a cough. I suggested going back in Monday to see if he would be ok for surgery on Tuesday and if not then holding off a week or two so Matt can go back to work. He thought Nick would be ok for surgery by the end of next week but that's just to much time wasted. Matt would be off of work 3 weeks before even surgery happening. We just can't wait that long without any income coming in. This will be our first week with no pay check, next week our next. Thankfully they only hold one week back.

Dr K (doctor here) is waiting for a phone call from Nicks surgeon with what he wants to do. So now we are playing the waiting game once again. On a good note... he is up to 16 lbs 15 oz... yay... only ONE ounce away from 17 lbs. Sad thing is, we know and expect him to loose close to a pound during his hospital stay.

Ok... so the other news... ugh! We had Lilly checked out also. He checked her first and spent a lot of time listening to her chest and such. I didn't think much about it figuring he was listening to her lungs and all. But then I found it a bit funny that he was listening to her neck. All of a sudden he asked me if she had a heart mummer also.... WHAT??? I said no, why? He said, well... children her age in the 3 to 6 age range tend to have a mummer which is common but hers just doesn't sound like it should. He listen to her again very closely and then had her lay down so he could listen. I asked him what we should do about this. If we should have her looked at while Matt was home. He suggested that when we take Nick in for his post surgery check up to also have her looked at and see what the card. doctor says.

I have decided that I am NOT going to worry about this until its time to take him in. I have so much else going on it just wouldn't make since to worry myself sick over something that can't be done right now (I say this out loud, more for myself then you guys lol). I did tell Matt though, that if something did come up wrong with Lilly that we WILL be looking into his bio. father's family history. He doesn't know anything about his bio. father or his bio. family on that side. Not only do we need to look into that side of the family for Nick and Lilly but also for Matt who just came down with high blood pressure and now has to take meds... at just a young 26 yrs old.

Major Mile Stone Complete... YAY!!!

Yesterday, I thought I would take Nicholas 9 month pictures a bit early since I have no idea when he will be going in for surgery.

I set up the dinning room table with a sheet for the background and a sheet on the table. I tend to like the lighter colors better then the dark as it takes away from the subject and makes the picture look a bit depressing, if you ask me lol.

I wanted to do a safari theme since I had this adorable safari digital scrapbook theme. I put on his lion outfit which to my surprise was a bit to small. Its 12 months but must run small.

Anyway, after getting him dressed and ready to go, Matt sat him on the table. Thinking he might fall over like he always does, Matt kept his hands close by. Nope, he did wonderfully, sitting there like a big boy, trying to grab all the stuffed animals that were around him and swinging them up in the air.

After pictures were done, which was so much fun to do. I wanted to work on his 9 month pages. I sat him on the floor with a big Trick or Treat pumpkin full of toys. He sat there pulling out all the toys he could and banging them against the pumpkin and didn't fall once.


YAY!!! One mile stone down (sitting unassisted) now just have crawling, walking, potty training and I'm sure the list goes on and on and on lol.

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.