Tuesday, April 14, 2009
At around 5:30 I woke up to Nick crying. She said told me how she put him in a rolling high chair and would push him along with her to where she had to go and how he would just laugh so hard that both his arms would just jiggle up and down. She said it was so funny.
At 5:00 he started to get crabby so she rocked him and he feel fast to sleep. This is when she tried to lay him down but once she did he woke up not to happy. I knew she had to make her rounds so I took over and was up ever since. Reminded me of having a newborn lol.
The day ended up being a good one though. We got the news that we could go home if his echo came back fine. At around noon they came in to do his echo and by 3:00 we got the go ahead to come home... YAY!!! I quickly packed up his things and out the door we went. It felt so good to be home again in OUR own beds.
We made it home around 5:30 and around 7:00 Matt's parents dropped Lilly off with all kinds of stories about Lilly and how she had been. The older 3 stayed another night at my parents and took the bus from their house to school today. They came home after school today.
Last night was about the same as the last two nights at the hospital. Every time I would try to lay him down he would start crying. The only way I could get any sleep was if I had him laying right next to me in bed. Poor Matt, who actually wanted to sleep in our bed last night, couldn't because I had a bed buddy lol. Thankfully we didn't get rid of his swing. He has been sleeping pretty good in it today... then again, it could be just because he is extremely tired from not sleeping well at night lol.
Today has been much better. I got him to sit up for about 15 minutes while he plays with his toys, although I'm very close to him in case he gets tired and falls over. He also experienced rolling over and was NOT happy lol. He quickly got on all 4s rocking and crying. We'll give that some more time.
All in all he has been doing real good and we are so happy to finally be home.
Nicholas had a pretty rough night last night. He was up just about every hour crying. Sometimes it was just to be held other times it was pretty hard crying in pain. It was a very long night. He only got morphine once so that was good but early this morning he got another and I think he had 2 doses today.
At noon they took his fluid tubes out which surprised Matt since it was still getting 4 to 6 ml out a shift. He seemed to act a bit better after that. At around 3 in the afternoon they took the IV out in his groin area. He was in much better spirits after that. He was his happy self again. Laughing, smiling, sticking his tong out and so on.
Around 5 this evening they decided to stop giving him morphine all together and just give him Tylenol or Tylenol 3. Right now he is not to happy. He just woke up and doesn't look like a happy camper. I gave him some Tylenol 3 to help out with whatever pain he is going through. I wish I knew what it was. I'm hoping its just his teeth coming through finally.
Saturday, April 11, 2009
This morning he got sick twice from the potassium meds they were giving to him orally. His morning nurse today talked to the doctors and they decided to just stop giving it to him all together. She also decided to take the IV out of his left hand since it was having a hard time flushing out anyway. He is so much happier now that he can move and bend that arm and get to his toys.
He still has the two fluid tubes in which only brought in .75 ~ 6 ml this morning at 6 am. They check his fluids at 6 am, 2 pm and 10 pm. There was talk about taking the tubes out yesterday but because he had a rise in fluids they decided to keep them in and hopefully take them out tomorrow. YAY... since I hate those darn things. They said they probably could take the one out but decided to wait and just take them both out at the same time. Fine with me, less pain on him.
So that's the update on Nick as of noon. He is sleeping quietly so I'm trying to keep it quit here not to wake him up. I Carly is on right now for back ground nose for him. A bit of home lol. Its showing the episode where YouTube "Fred" is on. I think Fred is such a crack up lol. My kids showed me his videos months ago lol.
Anyway, Nicholas is doing great. We arrived here around 9:30. Nicholas was wide awake watching Elmo's world on TV. He was probably wondering what the heck this red guy was as we don't watch those shows lol. He was a bit fussy but after I was able to feed him a little more then 2 oz he feel fast to sleep. I wasn't able to hold him. They said not until the pace maker wires were out.
Matt went to smoke and while he was gone the nurse that helped in Nicholas surgery came in and told me how he was doing and more about his surgery. She explained to me that the patch they put in wasn't as big as I thought and the hole was also not as big as I thought but then again his heart wasn't as big as I thought also so it was still a pretty good size hole for the size of his heart. She explained about the small hole that they sewed up and even the size of the hole they made and later patched up. She drew it all on a diaper which I told them I was saving since it had her drawings on it and made it easier for me to show others later lol.
Mary is her name. Mary told me that she was planning on taking his pace maker wires out around 1:00 when he was awake and if Dr F was ok with it she would also like to take his fluid tube/bubbles out also. Last night before I left his fluid levels were 21.5 ~ 21.5. Well when we went in this morning they were only 7 ~ 6 which has dropped BIG TIME. YAY!!!! They are so pleased with these numbers. At his last surgery that was what was holding us off in us going home before was the fact they still had not taken the fluid tube out.
Mary also said that she thinks Nicholas will be able to go to a regular (floor) room tonight and if TCU does not have a bed ready for Nick he will stay there. He can stay in PICU up until one night before he leaves and still be ok with going home. That's fine with me except I wont be able to stay with him while he is in PICU and we need to know if he will be having his own room today or tomorrow as we have to call the company helping out with hotel stay so they can give us an extra night at the hotel.
Anyway, Matt and I went to get lunch and then headed back to see Nicholas. He was up kicking or more like holding his feet up in the air. I brought out the baby doll I brought of Lilly's that he loves and OMG my little man was back. He wanted to give the baby a kiss and hold the baby and there was even a few times he smiled and started to talk. That's was one of the first times... other then him going back for surgery, that I felt I could cry at a drop of a dime. It did my heart good to see him doing so well. I told Matt that the way Nick has been acting, I can tell he is going to have a fast and wonderful recovery.
Thursday, April 9, 2009
When we arrived around 9:30, the doctor for PICU and nurses filled us in on everything. They talked about taking him off the breathing tube around 10:00. We noticed that they started to take the tape off of his face so we quickly left the room. We both didn't want to be there to watch them take the tube out.
My father in-law had called earlier to see how Nick was doing. Matt told him he would call him back once we saw him and got some news. Matt did call him back and has to call him with an update around 5 or 6 tonight. I called my mom to fill her in on how everything was going. I was even able to talk to Maddy and then at 11:00 we went to get some lunch.
We went back to see Nicholas who looked MUCH better then he did when we left. He had the breathing tube out of his mouth and even the one out of his nose. All he had was just a small oxygen tube in to give him a bit of oxygen. They also took him off the pace maker but left the wires in just in case they needed them later. Oh and they didn't even give him any blood... YAY!!! Not sure if I said anything about that in my last post.
He now has a beautiful pink color to him, or at least it looks better then it did before. He opens his eyes every now and then but I don't think he has seen me yet. I know he can hear me since every time I talk he starts to cry wanting me to hold him. That will probably come later this evening when he is able to drink some petialight (sp?) I think he has to be able to drink some formula before he can got to TCU or at least that's what Matt said he remembered happen last time. I can't remember but I do remember it was something that held us off till midnight.
Around 1:00 my friend Lola had called saying she was in the parking lot parked right next to our van. Matt talked her through how to get to us. We were sitting in a lobby on the first floor. The one we sat in yesterday was packed.
I took Lola in to see Nick and she took it pretty good. She loved on him the only way we could. Nicholas started to get fussy so we went out into the surgery waiting room for family. We visited some and then went to see Nicholas again. They had taken him off some more wires since he was kicking and pretty much kicking them off. There was even a time when Lola and I went back and they were changing his bandages which he was NOT happy about. Well they said he was fine with the bandages, it was something else he wasn't happy with so they decided to give him some more pain meds. That helped him quit down long enough to take a good nap.
We decided to go down for Dinner. I was hoping to be able to feed Nick after dinner since he was sleeping before but when I got back the nurse had already fed him a half hour before... Dang. Matt walked Lola to her Van and put some bags up we had full of snacks and stuff.
I told him I wanted to wait around till 8:30, 9:00 so I could feed him. We went and waited the time in the family waiting room until it was time since he was sleeping again. We went back around 8:30 and found that he was still sleeping. They didn't want to wake him up for a feeding so that meant I wasn't able to feed him... DANG!!!
The nurse explained to us that she tried to take Nick off of the oxygen fully but his oxygen numbers dropped down to low 90s. She wanted to keep it around 95% so she gave it back to him and it went back up. She said, its not much. Just a little more then what we would breath in but are hoping to ween him off of it soon.
She also showed me his fluid levels chart. He has two fluid tube bubbles in. Yesterday he started off on something like 29 ml (right) and 21.5 ml (center)... that was after his surgery. Then later last night it was something like 25 ml ~ 21.5 ml. This morning it was 23 ml ~ 22 ml and then tonight 21.5 ml ~ 21.5 ml. Slowly it is going down. They want it to be totally down to like 2 or 3 ml a shift before we go home. They are very happy with these numbers though.
I'm not sure if he is going to go into TCU tomorrow night or not. Matt thinks that it will be more like Saturday Night before he goes in. I guess only time will tell. Our hope is to go home Monday.
Everything else looks pretty good. They are planning on taking some more wires and such off before he ends up taking them off himself lol. They keep telling me he is such a strong little boy and full of energy lol. Yup, that he gets from his daddy lol.
Nicholas woke up around 3:00 this morning. He wasn't able to have any formula but was able to have some apple juice. Matt stayed up with him since he went to bed earlier then I did. I got back up around 4:30 and got ready. We left my friend Lola's house around 5:45 am.
Matt's parents arrived at the hospital around 6:15 thinking that's when we had to be there. Nope, we didn't have to be there until 7:00. By time we got there they had already had breakfast. We signed Nicholas in and then headed to the surgery waiting room where they weighed him and such. On their scale he was only 16 lbs 12 oz. Everything else checked out fine.
They took us to a small waiting room where they prepped him some more. Another couple came in with their little boy "Pork Chop" as his older brother (5) was telling us. His name was actually James lol. I don't know what he was in for. Something about his belly but he sure did fit his name lol. I thought he had enough for both Nick and himself lol.
Dr F came in and told us what he planned on doing. He said he went over Nicks heart cath pictures again and didn't think he would have to put the tube in... YAY!!! We talked to a few more people and at 9:00 I had to walk him back. I didn't have as hard of a time handing him over as I did the first time but it was still hard. The nurse was standing there waiting for me to hand him over but I just went brain dead and didn't hand him over. Finally it hit me that this was the moment and he needed to have this done. I think with all the time waiting for this day, it kind of made it easier for me then last time where it was so quick.
We didn't hear anything from Barb until about 11:00. She came out and told us that they had just started opening him up and would update us in about an hour on how he was doing. We went down for lunch and quickly came back up to wait on Barb who finally came around 12:30. This is when she told us that at noon they put him on the bi-pass and were now cutting into the heart. Once again she said she would be back in an hour to tell us how he was doing.
1:30 came and Barb came out with the news that they were done with the heart and were now sewing up the PA. Everything looked great and he was doing wonderfully. She said the next time we see her would be that the surgery was done and we could go see Nick. Now earlier in the day they told us that the surgery should be done around 2 or 3:00. I knew it wouldn't be done at 2 but was thinking more 3:00.
3:30 hit and still no Barb. I looked over at my mother in-law and said... I hope everything is ok, its past 3:00. This is when Barb came out and said that they were done with everything and were sewing up his chest. Dr F should be out to see us around 4:30 to tell us how everything went and by 5:00 we should be able to see Nicholas.
Dr F finally showed up around 5:00. Ok... so this is what they did...
He started off with cutting out the band. Then he went in to patch the small upper hole but ended up that all he had to do was just stitch it. This hole was a bit smaller then a penny. Then he cut a hole into the bottom part of his heart and patched the tunnel from his hole to his artery. Ends up that the hole was a heck of a lot bigger then expected. This whole time they told us it was a nickel size. Ends up that it was as round as a silver dollar and was more oval... 2 inches long by 1 1/4 inches wide. His heart is no bigger then Matt's fist. When I saw that I said... OMG its a LOT bigger then we expected. Dr F agreed! I see now why they were so impressed on how well he has been doing. From this point Dr F doesn't think he will need any more surgeries... YAY!!! but it all depends on how he heals and how scar tissue builds up.
We asked if we could go back and see him (by this time it was around 5:30). Dr F said he would like for us to wait a half hour before going back so the nurses and everyone could work with him. Matt's parents were wanting to get something to eat before leaving and had to leave soon so we asked if we had time to eat and he said that would be great, we could see him when we got back.
We went to 1st floor for dinner and then headed right back up. Matt and I went back first. OMG, he had so many more wires and tubes then he had before. He looked good though. He wasn't puffy or anything. His nurse said that it might happen later on yet but yes he did look good. She told us that they took him off the sleeping meds and would be waking up shortly. I asked her how much longer before he would wake up. We still had to check in the hotel and I wanted to be there when he woke up. I was so afraid that he would wake up with strangers and strange things all around him and get scared. She said it could be an hour or it could be later that night. We told her we had to run to the hotel and would be right back.
Matt's parents decided to stay while we went to the hotel just in case Nick did wake up. I was happy about that. Matt and I quickly went to the hotel, checked in and brought our stuff in. We made it back to the hospital within 45 minutes. When we got back my mother in-law was in the room with Nick. She just felt the need to be there with him. I went back and saw that Nick had been fussing and doing some crying hurt faces... awh... broke my heart. The nurse gave him some pain meds and he fell back to sleep. I stayed with him a little longer and then went with my mother in-law to say good bye to my in-laws. After they left Matt and I both went back in to see Nick. The nurse had put the picture up I made for Nick saying "thinking of you" with pictures of him and the kids. We have a mobile for him but are waiting until he is awake before putting it up and I also brought in his bag full of everything they might need.
We stayed with him for about 10 minutes but every time I would talk, Nick would hear me and start moving and crying. I felt so bad that... it was like I was causing his pain. I told the nurse that we were only going to do short visits but see him every hour or so. If anything was to go on we would be just right down the hall, to come and get us.
We went in for one last visit with Nicholas and then headed back to the hotel, where I'm at now. I just got off the phone with the doctor watching over him tonight and she was watching him to see how he was doing with his breathing tube. They are thinking of slowly lowering the level to slowly ween him off of it and hopefully withing 24 hours he will be able to have it taken out. I told her that I would see him tomorrow morning but I know we will be calling as soon as we get up to see how he did over night.
So that's how things are going for now. He was such a trooper. My strong little man!
I will try to update more tomorrow. Oh... I did get a couple pictures of him tonight that I will post later. I wanted to get a couple pictures a day to see how much he changes through out his stay. Dr F said he hopes to be able to let Nicholas go home either Monday or Tuesday. YAY!!!
Thanks for all the warm wishes and such. I saw all the replies but haven't had a chance to read them yet. I hope to do that tomorrow between visiting Nick.
Tuesday, April 7, 2009
Ok... here is the latest on Nicholas.
Went in this morning at 9:30 to CG hospital. They did blood work to check his white count, x-ray on his chest and a urin culture. He did great in getting the x-ray done. I was playing the "so big" game trying to make the fact they were holding his arms up high, as a game. It seemed to work.
He was a champ when it came to having his blood drawn. He only fussed as Matt puts it. If he had cried, the whole building would of heard it lol. I told Matt that when they go to put his IV in, I want to request this lady lol. She did a wonderful job.
As for the urin culture... that took awhile. We had to feed him and wait for him to pee in this little bag. How I found out he peed was when he went on me lol. It looked like I had peed my pants lol. Even the male nurse that did his x-ray (who had been talking to Matt the whole time about sports) teased me that he had some depends for me to use if I need some. I told him it was a bit to late lol.
We waited around an hour or two for the results and everything came back normal. YAY!!! Nick was healthy enough to have surgery.... FINALLY! We are to go in at 7:00 am tomorrow morning.
We left there and headed to my friends Lola and John's house to stay the night, who lives near St. Louis instead of going all the way home. On the way there we made all our phone calls to family and friends letting them know what was going on. My parents wont be able to come since they have my older 3 who are now out on Spring brake till April 14 (Maddy's 11th birthday). Matt's parents are now at a hotel in St. Louis and will meet us at the hospital in the morning. Lola is going to come sometime in the early evening to see how Nick and us are doing.
Well guess I better head to bed. Nick is finally sleeping... hopefully for the night. Matt is on the other part of the couch snoring away. I can tell that 4:30 is going to come way to early lol. Will update everyone when I get a Chance.
Friday, April 3, 2009
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.
Thursday, April 2, 2009
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.
Monday, March 30, 2009
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.
Tuesday, March 24, 2009
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.
Tuesday, March 17, 2009
This is the post she left us...
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).
She's still going strong.... :)
Friday, March 6, 2009
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 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.
Monday, February 23, 2009
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.
Wednesday, February 11, 2009
Tuesday, January 27, 2009
Thursday, January 22, 2009
The kids have been good today. I have no complains about them which is unreal lol. This all has to do with my wonderful wash machine.
The load in the drier was done so I went to throw the load from the wash into the drier when I realized I forgot to use fabric softener. I started a rinse load and went back to finishing dinner up. I could hear the wash machine was acting kinda funny so I went to see what was going on. I lifted the lid and realized the spinner deal in the center was not working. I turned it off, then turned it back on... no luck. I turned it to fully wash, still same thing. I ended up turning the wash machine off thinking it would drain on its own.
I decided to call Matt and let him know what happen. When he answered the phone I asked him... do you want the good news or the bad news? He said just give it to me. I told him... well, the drier works great but the wash machine is shot, it wont spin anymore. I walked over to see it again and was telling him what was going on. Maddy walked over to see also and said she stepped in something. That's when I realized the wash machine was LEAKING!!! All over my floor, water went. Matt told me to turn the water off from the back so I did. The water was now coming from inside where it just loaded up. OMG what was I going to do with all this water. I told Matt I had to let him go and deal with this. I grabbed a couple towels as I didn't want to use all our towels. We needed some for baths tonight. I pulled out all the clothes that was in the machine and stuck them in a basket and then put that in the sink to drain. I then started putting towels down on the floor to get the water up. I grabbed a bucket and started digging out the water from the machine. Oh what a chore this was.
I am learning that there is a lot of things I thought I couldn't do before but now have no choice but to do. Toilet floods, sink doesn't drain and yes... even a leaking wash machine I can now take on lol. What doesn't brake you only makes you stronger. I'm pretty darn strong right now. lol
Tuesday, January 20, 2009
They will start the heart cath around 8:30 a.m. It should take about 3 to 4 hours and then he will be in recovery for about a half hour. Once he is put in his room they will monitor him for about 6 hours (since they will be knocking him out). If everything goes ok, we should be able to go home around 6:30 that evening.
The following Monday (I'm thinking around February 16) , everyone that will have part in his surgery will get together for a meeting and talk about how they want to do his surgery. We will then get a phone call on when we are to come back to talk to his heart doctor who will tell us what they decided to do and what date it will be done on. She figures they will want to see us around the Monday after their meeting. His heart doctor said that he would like to have the surgery done first to mid March.
Not a great time for Matt to be starting a new job but this new job seem to be pretty understanding about all this and willing to work with him. Right now he is there going through orientation. He told me to text him as soon as I got the news as he was turning his phone to vibrate. I did just that and a few minutes later he called me. Thankfully the orientation hadn't started yet. I told him that Donna (nurse that called) still had to talk to the man who would be doing the heart cath and see if this date would work for him. Either way she is going to call me back this evening to tell me for sure either way. I'm to text Matt again to let him know if its a for sure go.
Sunday, January 18, 2009
At just a week over 6 months old Nick has had his first temper tantrum tonight. It was kinda funny/cute. He was sitting in my lap as I was playing on the computer. Normally he likes to watch the screen with new pictures coming and going but tonight... nope. He started fussing and then all of a sudden he flings his head back and stiffens up. I turned him around to face me, talked to him for a minute and then went back to what I was doing, still with him facing me. He then pushes on me and starts to scream. I turned him back to face the computer and he had another head flinging, stiffening moment. I kinda chuckled and told Matt.... would you look at this, Nick is having his first temper tantrum.
I handed him to Matt who was sitting down watching football. Normally Nick loves to watch football but I guess he wasn't in the mood tonight. He did the same exact thing to Matt. We both laughed. I picked him back up and sat him down with me in the recliner. He turned his head into me which indicted that he was wanting to nap. I fixed him to his nap position and fast asleep he went.
Who would of thought they had their first temper tantrums at such a young 6 months of age but I guess they do. Nick is proof of that lol. Its cute now, but I know for a fact (from history with my other children) its not cute when they are older lol. Lets hope he outgrows this but I know thats just wishful thinking lol.
My mom woke me up at 6:00 to tell me that it was to cold out for the kids to walk to school and since they had just a half day, just to drop them off at her house so she wouldn't have to worry about them walking to school or getting on the bus to get to her house. No problem! lol
We were ready and out of the house by 7:30. Yep! ALL 7 of us lol. Thankfully I had packed Nick and Lilly's bags the night before and got all the things we would need like double stroller, ready also.
After dropping the older kids off at my parents we headed for St. Louis. Nick and Lilly slept most of the way there. With this weather, it kind of sucks. It was -3 out and I was so worried Nick would be to cold so all I did was put his snowsuit on with a blanket to cover him. After about an hour in the van he started fussing and when I checked on him he was so hot he was sweating. I had to take him out of his seat to take his snowsuit off. After that we just hurried from place to place with his snowsuit over his body and blanket over his car seat. It worked fine since I could just take the snowsuit out once we got in the van for the 2 hour drive there and back.
When we got there we went in the office we normally go in, just to find out that a couple days before they moved cardiologist to another department. They now have their own office for just the heart.
We were brought into a room where Nick was weighted. On their scale, he was 14 lbs 2 oz. YAY!!! Last time we were there on November 7, he was only 11 lbs 4 oz so he gained almost 3 lbs in little over 2 months. He had changed so much since they saw him last.
His doctor and two interns brought me down to have his echo done. This is where the fun begins. Since Nick was not feeling well at all the night before and then he was not wanting to sit still for the echo which meant they had a hard time seeing his heart the way they wanted. I knew he was tired and just wanted held but I also knew they had to get this done. Finally I said something to the lady doing his echo about him being tired and she said if I could get him to sleep that would be great. Sure enough, as soon as I picked him up and wrapped him in his Dallas Cowboys blanket, he snuggled right into me and within a few minutes he was fast to sleep. She was now able to finish his echo.
What always sticks in my mind is when his doctor told the two interns that they would want to see this echo because Nick has a "true" VSD.
Matt and Lilly waited in the room for us while we were getting the echo done. When we got back to the room Matt and Lilly had gone through Lilly's goody backpack (full of toys, animal cookies, candy and more) eating away. Lilly gets this backpack full of goodies ONLY when we go to the doctors. It keeps her happy and when she is happy, we are happy lol.
His doctor came back in the room and told us that his echo came back fine. He checked Nick out some more and asked questions about how his mile stones have been going. I explained to him everything that had been going on for the past 2 months. He was very pleased in how well Nick is doing but said that he does want his surgery to be done no later then the next month or two.
So now we are waiting on a phone call from his nurse to tell us when his heart cath will be done in February and by early to mid March he will be having his surgery. Now that I know his surgery will not interfere with his mile stones, I'm ready to get it over with and to move on from here hopefully with NO MORE surgeries.
Thursday, January 15, 2009
We checked him a half hour after his second dose of Tylenol and it had went down to 98.9. That was about 4 hours ago and so far it doesn't seem like he is running a fever, although he is taking his evening nap so we shall see what it is when he gets up for his last feeding of the night. I'm hoping we make it at least till his check up tomorrow at St. Louis.
Even though he has had a fever all day today he has been in pretty good spirits, although that's if someone is holding him. I got pretty good at being able to type on my laptop with one hand and holding him with another lol.
Wednesday, January 14, 2009
Tuesday, January 13, 2009
After going through all the normal paper work, questions and just every day chat Nicholas finally got his shots... 3 of them! Poor baby just had his RSV shots on Friday (2 of those) and now 3 today. He was a trooper though. He hardly cried for the first one and after the second two, which have a bite to them, I fed him a bottle and he was fine... actually went fast to sleep. Once we got home (after a quick run to the store) he woke up and was back to his happy self.
While there, we were told that he now gets juice on his WIC package meaning he can start having juices... YAY!!! he should love something other then formula. I'm still a bit worried about the calories so the highest calorie juice we can find he will have. He is also at the age where he can start playing around with a sippy cup and even a cup. He got a sippy cup that can also be a cup, from WIC. I still have Lillian's that she played around with when she was his age. When we were at the store we picked him up his first soft nippled sippy cup... blue of course lol.
So other then his RSV shots each month and a flu shot if his doctors give the ok, he has NO MORE shots until he is 12 months old... YAY to that! If only that was the only thing he would have to do. We know that in 2 months surgery is in his future. I wish it was only shots in 2 months... if only!
Saturday, January 10, 2009
Just to think... I did this "5" times and I have to say... every time was well worth it. I am so lucky to be the mother of these 5 wonderful children. They are worth every pain, cut and scar that was given to me... just to have them in my life.
I'm so blessed!
Friday, January 9, 2009
Wednesday, January 7, 2009
I started him on cereal a couple weeks ago but only in a bottle and it wasn't every day... just every so often. He did fine with that so I thought... hum... lets try him on baby food... applesauce of choice. When I tried the first time a few days ago he would have nothing to do with it. He got maybe a bite or two and that's it. So tonight I thought I would try again and I have to say he did pretty good. It was funny/cute though. When I would give him a bite he would make this face as if I just fed him a lemon. Was the applesauce that bitter lol. Lilly didn't seem to mind it. She had to try a bite... or two... out just to make sure it was good enough lol. Finally I had to tell her it was Nicks dinner and that she had hers... cheese burger and fries. She kept telling me... now Lilly's turn lol.
Nick did so well that he just about ate a whole 4 oz jar full. There was just a bit left so I stuck it in a bottle with some cereal and formula and he downed another 5 oz of that. Ever since I started him on cereal he has been eating like a little piggy (for him anyway lol). Lets hope for some good weight gain this week.
Oh and yes... he is doing wonderful on his weight gain. As of a week ago Monday, he was up to 13 lbs 4 oz. He has gained about a pound, if not more, a month since his surgery. We are hoping for 13 lbs 9 oz this coming Friday and maybe even make it to 14 lbs by time he goes to St. Louis on the 16th. He is even starting to get some chunker legs which I just love to tickle lol.
I did take some pictures of him eating that I still need to upload from my camera and plan on putting into my dropshots. I will try to get one into my myspace for everyone to see. Its adorable!