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Tuesday, November 11, 2008

Owain's Heart Defect Story Copied From My Livejournal Account

I have spent too much time trying to get the different import programs to work. I am supposed to be able to import my livejournal posts over here, along with all of the comments. I have tried a few different programs several times, and for the life of me I can't figure out what I am doing wrong.

I recently learned that I can predate my posts here, so I have copied all of the posts with pictures over here and predated them with the same date and time as the original post. I can't predate the comments, so I have just copied them into the comment section as they appeared on livejournal.

And in case you get confused with names, my husbands name is Milio William, but these days he goes more by Will or William than Milio. He is also known as Wall Nut.

If you have found my blog because your baby has a congenital heart defect, I hope that it helps you and that you find it useful. If you have any questions, please feel free to ask.

Monday, November 10, 2008

Owain is Doing Great & Recovering Quickly!

Owain is recovering very well & sooo very quickly! I am amazed at how much quicker this recovery is. I did mistake his crankiness with a double ear infection for crankiness because of his surgery...which left me with bad mommy feelings, but I know I can't know everything, so I am working on forgiving myself for that. Now that he is on antibiotics for his ear infection he is even happier. He is turning into a little rollie pollie, every time I lay him down he rolls back & forth. I think he is getting to the point where he wants to go go go LOL. I think that is a pretty good sign that he is feeling much better.

I have never seen a baby so happy to eat bananas before! I gave him his first bananas a few days ago & he giggled & laughed his way through the entire meal. He is one happy baby!

Tuesday, October 21, 2008

Owain is home :)

I know I should have posted hear sooner, but I haven't had more than a minute or two to try to sit down at the computer.

Owain came home last Wednesday, October 15th. It is amazing that he was only in the hospital for a week and a day after having major bilateral open heart surgery!! He is such a happy guy, you would never know what he went through just 2 weeks ago, he is my hero. We still have to be extra careful when we pick him up & can't pick him up under his arms for another 1 1/2 months, but he loves to sit up on my lap & hang out, like nothing ever happened. Babies are so resilient!

He is finally getting his appetite back & is almost eating as much as he was before surgery. He is also on no pain meds, just a bit of Tylnol when he gets too fussy, which he doesn't do often any more. Mostly he just wants to be attached to me at all times, I swear he is like velcro LOL. I call him my little cling-on.

Pretty much as soon as he came home we all got sick & except for taking care of the kids...a few of whom had to take care of themselves...I have been trying to recover on the couch & pretty much had to tie Milio to the couch so he wouldn't go out & work on the addition.

I have one picture of him in the hospital & one a few days before his surgery. Enjoy!!

We have a follow up appointment at UVA this afternoon, so that is all I have time for now, but I thought you all deserved to hear from me & see some new pictures of my little guy!

Thanks for all your prayers & support! (((big hugs)))

Thursday, October 9, 2008

Owain is recovering slowly

Owain is still in the PICU. We were hoping that he would be out on the floor by now, but his lungs and a high fever have been keeping him here. His fever has been dropping most of this evening. He has some fluid both in his lungs and around his lungs, so his oxygen has been lower than everyone was hoping, but it is still higher than before his surgery. We spent today trying to figure out if they were going to have to add a drainage tube to clear the fluid from around his lungs, but as of now we are waiting to see how things go and we will find out tomorrow after a few more chest X-rays. It seems like he has a bit of a cold that is junking up his lungs.

He was soo cranky yesterday morning, but as gotten less cranky today. He was also really swollen yesterday, but it looks like most of the swelling has gone down and he looks great. He is pink and has lost that dusky gray blue tint that he has had for the past month, it is hard to believe that he just had open heart surgery, you would never even be able to tell by looking at him.

His issue tonight seems to be his blood pressure, it is going up and down and alarming at both the high and the low settings.

He slept for most of the day and started to eat much more tonight.

Already it looks like we will be here for at least another week or more. I was planning on at least a week, and was hoping everything would work out. We finally got a private room tonight, so I can spend the night in the room with him.

Thanks for all your prayers for Owee (((hugs))) to you all.

Tuesday, October 7, 2008

Another Successful Surgery :)

Owain came out of surgery around noon today,Yippie! He is doing well. He still hasn't woken up yet & is still on a bit of pain killers. We are waiting for his pain meds to wear off and most likely they will be able to take him off the respirator early this evening. He was starting to wake up and wiggle around a little bit, but then they had to give him some more pain meds because he is not quite ready to come off the respirator.

I have been so nervous about this surgery and I am so glad it is over! He still has several months of recovery, but knowing this is behind us is such a relief, I feel like a huge weight has been lifted.

It does look like he is going to be in the hospital for about a week and I am prepared to stay here with him most of that time. He might even be able to move out of the PICU by tomorrow night or Thursday morning. He is in a shared room with two other cardiac babies, so I can't stay in the room with him overnight. We are staying in a hotel tonight, but I hope that he does well enough that he can move out to the Pediatric floor by tomorrow night so I can stay in his room.

I haven't been very hungry the past few days, but I am starving now. I am going to head down to the cafeteria and see if I can find something to eat, I could use a nap too!

Thanks for all of the lovely prayers and support.

If you want to light a candle for a his recovery, his candle page is still here

Monday, September 29, 2008

Owain's Surgery is Next Week

We are getting ready for Owain's next surgery. He is going in for the Glenn Procedure. I was looking for a good definition to explain it better, but I am not finding one right now. I think I mentioned it in earlier posts.

We are going back to UVA Children's Hospital on Monday October 6th for his pre-op appointments, which will pretty much take all day and then his surgery will most likely be first thing Tuesday October 7th. He will be in the hospital for at least a week. I will be spending most nights there with him.

I mentioned his prayer blanket in my last post right before they changed his surgery date, If you want to have a prayer included in his prayer blanket, let me know & I will say your prayer & tie a knot for you.

Monday, August 25, 2008

Owain's Prayer Quilt

My second son E Nut has a friend from school who's mother gifted us with a Prayer Quilt for Owain. She and some of her friends from her church made it for him. It came with instructions that reads:

"Each knot tied represents a prayer that was said specifically for you. Notice that the yarn has been left long. This provides others such as friends, co-workers, and family the opportunity to pray for you and to tie a knot. We hope that this quilt will bring you comfort and peace."

There were 16 signatures on the instructions and I only recognize 1 of them, the other 15 were by her friends from church who I never met and most likely never will. It is so amazing that there are so many people praying for Owain, when I look at his quilt it warms my heart to know that there are more prayers for him than I will ever know. I feel so honored knowing that my son's Heart is in the hearts of so many.

Owain's next surgery is scheduled for Wednesday September 3rd, not sure what time yet though. It looks like it will be an early morning spot though. We wont know for sure until his pre-op appointment on the 2nd.

I realized yesterday while I was looking at my journal that you all have seen a picture of his Prayer Quilt, it is the one he is laying on in my last post. If you look close you can see that there is still room on many of the strings of yarn for more prayers.

I know that he has lots of love and prayers watching over him every day. I am going to be taking his Prayer Quilt to the hospital for his surgery. If you want your prayer to be a part of his Prayer Quilt, let me know and I will say your prayer for him while I tie the knot in his Quilt.

Well I am editing this post, because I just heard from UVA and I guess late last Friday Owain's cardiologist and his Dr that did the Cath procedure a few weeks ago got together and decided that he could wait to have his surgery. I feel like I should be more happy than I am now, but at the moment I am in the middle of an emotional roller coaster. I was getting ready, and now I don't have to, but I will have to get ready for it again next month, I just don't know when. I was already starting to get stressed about it this morning trying to get all of our plans with the kids & school and schedules and now I just don't know what to think.

Friday, August 15, 2008

Owain had his cath procedure today

Things went really well!

His heart looks good & he is a good candidate for the next surgery, but we are not in a rush, rush position any more. His doctor said that we might even be able to put off the next surgery until closer to the end of September instead of at the very begining. He only got a few pokes where they put in the cath & didn't do any incisions this time & and will recover pretty quickly. He was really mad for a while after the procedure, but after a few hours of good sleep he is back to being a happy little guy.

One thing that I didn't realize before is that he has an extra vessel that comes down from his head. His next procedure is the Glenn procedure, where they send the blood from his head directly into his main artery that goes into his lungs...he has two vessels so each vessel will go directly into a lung. The Glenn is normally one vessel that goes directly into the main artery that goes to the lungs. It means that the surgery will take much longer, because they are doing the procedure twice. It also means that the blood will be less likely to back up, because his blood does not go to his heart to be pumped into his lungs...(he does not have that valve) Gravity will just send the blood down from his head & into his lungs.

Anyways, that is just the quick story, I have to find out some more information on it so that I can better explain it. For now you will just have to enjoy this picture of Owain ;) He was so busy watching the Olympics that he wouldn't look at me.

Thanks for all the prayers sent to him, he was truely watched over. I could not have asked for a better outcome.

Friday, August 8, 2008

Moving forward with Owain's next surgery

I think I feel OK about this. I knew it was coming so I have been trying to prepare myself. Of course I am sad, I am worried, I am scared, but I am OK with it. It has to be done. At least I am TRYING to be OK with this.

We had an appointment with his cardiologist the other day and they think his O2 sats are low enough and he is big enough to start moving forward.

Friday they are going to be doing the catheter procedure. They will go in through an artery, probably in his neck and look around at his heart to see how much his arteries have grown and basically see how his heart is doing over all.

I thought that they were going to schedule his surgery based on what they found during the cath procedure, but they called this morning and we have the surgery scheduled for September 3rd.

I don't know the exact times that everything is scheduled, they sent out a package by FedEx that I should get tomorrow with all the times and everything else I need to know. I do know that they would like to get him in first thing on Friday morning for the cath procedure so that he can recover from the anesthesia and then come home Friday afternoon or evening. He will be in the hospital for about a week after the open heart surgery in September.

I know I have been a big slacker with the pictures, so I have a little bit of every one here for ya.

Wee Nut, Just last week.

Avery's second birthday
Little Nut Nut on his 2nd Birthday!

EJ loves his XBox Lego StarWars!
E Nut loves his video games!

Emil's 7th birthday
Wing Nut on his 7th birthday!

Tuesday, July 22, 2008

Owain is OK for now

Well his O2 levels are still low, but they did spend a bit more time in the lower 70s today at the hospital. They did an EKG and an Echo and everything looks good. His usual cardiologist is out this week & he saw another Dr, so I don't really have any answers. She told me that they would get back to me early next week when they decide when they are going to perform the catheter procedure. The have to go in through an artery and check his heart out. It is possible that they are going to be doing this in the next few weeks, but hopefully closer to the end of August. How his heart looks at that point will determine when he will have the Glenn procedure, which is the next open heart surgery. It could be as early as the day after they do the catheter procedure or a month so after that.

I kind of get the feeling that they are waiting until he gets to a certain size & weight before they schedule the next surgery. She didn't say so exactly, she just said that they are going to want him to be at least 6 kilos before they operate. He is around 5 1/2 maybe a bit less, I don't remember now.

So for now I don't have any answers, which is really frustrating, but it looks like this is the beginning of getting ready for his next surgery.

....and I KNOW I still have to get some more pictures posted for all of you! It's on my list for tomorrow, I promise, does that make you feel better lol :)

Taking Owain to UVA today

So if you didn't see yesterdays post, read that first and then come back up here to read this one.

His O2 sats are still low again this morning and his pediatric cardiologists want to see him this afternoon. They are in the 61 to 72 range, mostly in the mid 60s.

Wing Nut and E Nut are a 1/2 hour in the other direction at summer art camp & I need to pick them up & take all the boys with me.

There is something wrong with my cell phone & I have not been receiving my incoming calls. I know for a fact that I have missed about a 5-6 calls just this morning! Ntelos said to just bring it in & they will update my phone, but if I don't get to it this morning I might not get your calls if you try calling.

I will post here how things turn out tonight.

Monday, July 21, 2008

This is Soo not what I wanted to post about Owain, but

I have been hoping to get some more pictures of Owain posted here, but the day keeps getting away from me. He is getting bigger, smiling, babbling. He is a happy little guy & he loves to laugh & has finally become ticklish...I love to tickle my little beastie boys! Everything healed well, and he doesn't seem like he is in any pain when I grab him under his arms. He is strong & can hold up his head and look around, he even follows me with his eyes as I walk across the room.

He was doing really well for a while, but now I am starting to get nervous.

When Owain came home his oxygen levels were in the low 80s to high 70s. For the past few weeks they bounce from the low 70s to the low 80s & occationally drop into the 60s. Normal blood oxygen is 97-100%. When he was cyanotic & sent to UVA he was at 42%.

The last time he had a peds cardiology appointment I asked, what are the numbers to watch out for when things start to look bad. They say when he is consistently in the 60s. For the past 3 days he has been in the 62-70% range.

They also said that if it happens too soon before he is old enough they will have to do an extra open heart surgery to put in a bigger shunt & then still do the next procedure in Sept or Oct.

I sent his oxygen levels to his patient care coordinator & I am just waiting to see what she says. I am starting to get really scared.

I always have a candle lit for him, if you get a minute please light one so that his O2 levels go back up.

Saturday, July 12, 2008

I found a new feature on the candle site!

After writing the article How to Light a Candle Online to Pray for a Loved One I contacted to let them know. They told me that there is a way to create an entrance page just for Owain's candle. I just did it & it is pretty cool!

So here is his new entrance page: Light A Candle for Owain

Wednesday, June 4, 2008

Owain is home!!!

He actually came home last Thursday May 29th!

We have been getting settled, going to different Dr visits and trying to get some rest. The kids are so excited to have him home. It was very strange for them to be with out their parents for so long. They were just as disappointed every time his discharge got pushed back as we were. His incision is a bit infected, about a half inch or the very top. It is pretty common because babies pull at the bandage & irritate it & when they eat they drool milk on it or spit up on it. He is on some antibiotics for that & it is much better than it was last week. He is still on a few meds, not to much & nothing major.

He is doing really well and loves to be around his family!

I have been so busy catching up with everything since he got home & have had a hard time making it to my computer. And of course my computer had to crap out on me last weekend & I spent too much time getting it working again. Now we are getting these crazy thunderstorms & tornado warnings & my computer is pretty much turned off most of the day.

And the foundation for our back addition is finally done, so no more excavation equipment in our back yard! Whew, I am glad that is over...What a mess! I got a few pictures of that, but I will have to get them downloaded some other time.

We are so thankful for all the meals that are coming our way! It is such a huge help! I have been trying to clean my house for days & it still looks like a tornado actually hit our house LOL! What a mess!

I also lit a new candle for him

This time from now until he has his second surgery is going to be the most critical time. We have to watch his oxygen levels & monitor them every day. He will grow so fast that he will soon outgrow his first surgery. When his oxygen saturation starts to drop he will go back in for a catheter procedure to check on his arteries & then he will be scheduled for his next surgery. The first one was called a BT Shunt & the next one will be the Glenn procedure to route all of his blood coming down from his head directly to his lungs. Another reason, aside from his growth, that we have to watch him so closely, is that he could get a blood clot on the shunt...which is a gortex tube. He is taking aspirin as a blood thinner to reduce the risk of clotting.

...So I lit another candle for him...I started a new group, named Owain, because there were lots of different families lighting candles who had some one in the family with Heart Disease or Congenital Heart Defects & I wanted a candle just for him...

Thank you so much to every one who has sent gift cards, food, $$, activities, books & games for the kids, mom gifts for me, prayers, cards, support & love!! I really can't thank you enough or tell you how much it means to us!

Monday, May 26, 2008

Still waiting for Owain to come home...

Just a few minutes after he was born.

Owain is still at UVA & we are starting to feel like he will never come home. I have been leaving as early as I can after getting the kids off to school & staying until 7pm or later so that I can nurse him. He has had some really good days with his feeding & other days, like today have been really hard & he doesn't want to nurse at all. He has some days when he gains a good amount of weight & then he will loose a little weight every day for a few days. He is still big...over 8 pounds, but the Heart doctors are keeping him there because of his weight. It is starting to get frustrating because last week they told us he would be going home last Friday, then they told us he was coming home today, then Tuesday, & now they say not until Wednesday. I was doing really well with driving back & forth every day, but now that I don't know when he is coming home I just feel so tired and beyond frustrated.

The good news is that they have him completely weened off of the methadone, which is what they had him to cover the withdraw effects of being on the pain killers for so long. The only thing he is on now is aspirin, which he will be on for the rest of his life, a diuretic to help his kidneys & some multivitamins. They did start supplementing his feedings with a concentrated formula to help him gain weight, which is what I was really trying to avoid, but if it helps to get him home faster I can deal with it. They took the feeding tube out a few days ago & he was eating much better after they took, the tube out...until today. It is possible that his fussy feeding today was because he is off the methadone, today was the first full day with out it.

I have a few new pictures of him that I have taken over the past few days...but they are on my camera & I still haven't installed the software to download it. I thought about trying to get that done tonight, but I was at the hospital pretty late tonight because he was such a cranky head I couldn't bring myself to leave. I did want to give a quick update for every one since I haven't been on the computer all week. If I get a few extra minutes tomorrow morning I will load a bunch of new pictures...

Will's mother did the Art in the Park show for me last weekend & we did great! It was actually my second best weekend ever! Whoo Hooo! That is such a good feeling, especially since I most of my money is made doing shows & I wont be doing very many this year. I am used to vending every weekend from the beginning of April all the way through the Christmas Holiday season & now all of that has changed. I am more than freaked out by that! Now more that ever I really need to work on selling on the web....but that is all for another day.

...for now I have to go finally eat my dinner & have a few sips of wine...I think William is chilling a bottle of Mead that I got a few months ago....mmmmm. Again I want to thank you all for all of your love & support, your comments, cards & phone calls mean so much to us. I still do have a bit of a hard time talking about this on the phone, but please know that I appreciate everything!

Monday, May 19, 2008

Getting better every day!

William insisted that I add a family there it is! Three very excited big brothers & two very happy & tired parents just a few minutes after Owain's birth.

Lots of changes have happened since last Friday! Friday night when Will got to the hospital to visit they were getting ready to move Owain back to NICU. We first got moved from NICU to PICU because they ran out of room in NICU & they send heart babies to PICU after surgery, so it that is just the way they do it. So now he was back in PICU, which is kind of frustrating because there is no privacy, we got used to closing the glass doors & tuning out the rest of the PICU. There was even a bench seat big enough to be a bed & I was able to take naps in the room with him. He had his own room in NICU, but we only had a curtain for privacy & a few uncomfortable chairs with no bed. It made visits even more exhausting.

Since he was moved back to NICU on Friday, he is completely free of all IVs & off the oxygen. He is only taking 2 meds orally & is just about weened off of both of them. I finally got to hold him on Saturday! I get to nurse him while I am there & he is feeding on demand instead of the scheduled feedings that he gets when I am not here. I can't even begin to explain how happy I am that I get to hold him & nurse him. I still cry just thinking about how good it feels! It is amazing how alert he is now that he is off the pain meds and how much he looks like a little baby again.

They were able to take out his stitches today from where they went into his arteries to try the first cath procedure that didn't work, along with the stitches from where he had a chest tube after surgery. Every day he gets better & better & closer & closer to coming home.

He is doing well enough that they are moving him out to the Pediatric floor and out of Intensive Care altogether! We still don't know if we will be getting a private room, or a double room, but it will be much nicer to share the room with only one other baby instead. We also wont have to scrub in to go visit or wait outside of the Unit to be let in. I am just kinda bummed that we had to leave before he was moved.

We have been told that we might be able to take him home with in a few days! It seems like they are really trying to get him out of the hospital. So far he is gaining weight really quickly & they are more than happy with the way that he started nursing really well so quickly. If he keeps doing as well as he has been, then he will be home by Friday! At least that is the rumor with the nurses...

Now I just need to figure out how I am going to pull off getting ready for the Art in the Park show in Staunton this weekend. Will's mother is going to help me out by selling for me, but I still have to get everything together & hope that I don't forget anything. I just hope that I have enough jewelry made since it has been almost a month since I have sat down at my studio table & gotten anything made.

Friday, May 16, 2008

Owain is getting better

Just a few minutes after he was born.

Owain is doing much better this week! He is pink & plump & full of life!

They were able to take him off of the respirator yesterday! It is so wonderful to be able to see his face again & to hear him cry. He is still a bit of a cranky head, but now that the respirator is gone he is not in so much pain. They are weening him off of his pain meds & just have him on a diuretic to help him get rid of the extra fluids...which is common after surgery. Aside from that he really isn't on anything else. He was given a bit of methadone to help him come off of the pain meds because he was on them for so long, but for the most part he really isn't suffering much with withdrawal from being on pain meds for so long.

He has a strong tight grip and loves to hold on to my finger & I love to look into his eyes. He has these wonderful periods of being awake when I get to stand next to him while holds on to my finger with his tiny little hand & we just look into each others eyes. I have so many mixed feelings when he looks at me, he sees me & he is so happy, but at the same time he looks around & I can see the confusion & I just want to pick him up & cuddle with him.

Now that the respirator is gone, he is getting closer to the day when I can hold him again. He has a line in one of his arteries that they use to draw blood to check the level of different gasses & a few other things. When that line is gone I think that I will be able to actually hold him & try to nurse him. They are thinking that that line might come out today or tomorrow.

Unfortunately, my almost 2 weeks with no sleep has finally caught up with me & I have manged to get fairly sick. Lots of hot flashes & chills with a bit of a soar throat & all over body aches. Will had this before Owain was born for a day or two, but it took me several days to figure out that I was actually sick & that it was not just hormones & being tired. So I have been in bed or on the couch since about 10 oclock last night & will be unable to even see him today. It breaks my heart to be away from him for so long, but it is really doing me some good to catch up on sleep & actually enjoy my food instead of eating on the run.

William will be able to go & visit with Owain tonight after work & give me any updates. The nurses are really good about keeping me updated when I call in, but it is so much better be able to see him to get our own perspective of what is going on & how he is doing.
I just got the time to get back on to the couch order from Will & he is right, I should be sleeping so I can get better to go see Owain tomorrow.

My parents had to go home yesterday & it is so strange to be here alone. They will be back in just over a week to help out again for a few days & to see Owain. Thanks mom & dad for all your help & support! We miss you!

Thanks to every one who is still sending gift cards, gas cards & food. You have know idea how much this means to us and what a great help you all have been. I love you all!

Tuesday, May 13, 2008

Surgery went perfectly!!

Just wanted to pop in quickly & let every one know that Owain's surgery on Monday went perfectly & he is doing great. They have been able to start taking him off of different meds & are hoping to have him off the respirator by tomorrow. He looks wonderful!

It is such a relief to get his first surgery over & to know that he is one step closer to finally coming home.

I lit a candle of Owain here

The name of his group is Heart if you need to do a search. Please light a candle for a quick & uncomplicated recovery so my little guy can come home soon.

Again, Thank You So Much to everyone for your support, prayers & help!

Sunday, May 11, 2008

Surgery moved up to Monday moring

We just heard from one of the Cardiac fellow & Owain is not responding to the meds as well today as he was yesterday. So surgery has been pushed up to first thing tomorrow morning. He is first on the schedule & he will be going down for prep around 6:30am & starting surgery around 7:30am.

Please take think of him & pray for him during this time tomorrow morning.

Mothers Day

Just a few minutes after his birth.

It has been a week since I woke up in the hospital & saw my little dark blue Owain. It has been such a long emotional week with so many ups & downs. It still seems like a surreal dream, like I am floating through it all.

After Owain's attempted procedure on Friday his stats were a bit off & they spent the day thinking it might have been his body reacting to the stress of the procedure. When we got to the hospital yesterday the room was filled with 2 ICU doctors, along with about 4 others including his nurse & respiratory nurse. Cardiac babies often times have a hard time with their bronchial tubes wanting to close. His bronchial tubes were having spasms and wanted to close so his oxygen levels were low & dropping even though his respirator was turned up to 100% oxygen. He just wasn't absorbing oxygen. They were able to start him on a few new meds and he has been doing much better. He was also a bit anemic which is common for Heart babies and he was give a blood transfusion which helped resolve that really quickly.

One of the meds they started him on paralyzes his voluntary muscles so that he is not a wiggly worm. He has always been very responsive when I touch him & through his groggy sleep he would try to open his eyes to see what was going on. William got the best response on Friday right before his procedure, every time he said anything to Owain, the little guy would open his eyes just a bit. He was becoming very alert & while it was exciting to see him so interactive, he really needs to be more sedated & not get too excited. So now they don't want him moving & wiggling around so that his body can get rest & remain strong for his surgery on Tuesday. The hardest thing about yesterday was that when I touched his hand he could not grab on to my finger & squeeze it.

As of this morning, he had a really good night and has remained fairly stable. For a bit his oxygen levels were dropping, but they adjusted his meds and he is doing well. We are still scheduled for surgery for an unknown time on Tuesday.

Thanks so much for every supportive & loving word! Thank you to my friends who stop by my house to help out & who stop by the hospital to visit. Thank you for crying with me & for making me laugh. I love you all so much.

Saturday, May 10, 2008

Owain is Doing Better

Just a few minutes after his birth.

A lot has happened in the past few days. Some good and some not so good.

He has been in critical but stable condition for the past few days. We were excited when it was determined that an interventionist could try a cath procedures which is a less invasive procedure. That was scheduled for yesterday. The procedure was that they would go in through an artery in his neck or leg with a catheter and put in a stint that would direct the blood to where it need to to. Unfortunately the arteries around his heart are too twisted, very cork screw like and they were unable to the spot they need to get too.

That was overwhelmingly disappointing. I completely put it out of my head that it wouldn't work, not wanting to put any negative energy out there for the universe to pick up on. If this would have worked he would be off the respirator now & home by the end of next week.

So far every scenario that they have given us of anything that could happen, little Owain has always had the worst case. He just seems to be a difficult little guy. Through everything though it has been said over & over that one thing that has helped him is the fact that he is so big. I really believed throughout my pregnancy that he was going to be born around April 15th & even if he was born on the 25th which was his due date he would have been much smaller. He was the most difficult to deliver & I was running out of energy in the end because he was do big. It is such a good thing that he stayed in my belly for as long as he did because it makes him so much stronger than most cardiac babies.

He is scheduled for Tuesday May 13th to have open heart surgery. This is absolutely terrifying to me & I am having a really hard time holding it together. When I think of what they need to do it just breaks my heart that he has to go through this. Once again I am so thankful that I live so close to UVA and that Owain has the best care possible. I am also thankful that I my parents were here for the birth & that they are able to take care of my older boys and that I am able to come home to see them every night.

We still don't know what time the surgery is going to be, they will let us know on Monday when they work though their schedule.

He is slowly recovering from his procedure yesterday. His stats are a little off, but they have improved quite a bit throughout the night.

Hopefully I will be able to get back here to my journal to let every one know the exact time of his surgery on Tuesday so that every one can be thinking about him & praying for him.

Thank you so much for all of your support! Thanks for all of the gas cards, food and offers for baby sitting my kids. Thank you for your prayers & for your support I love you all so much.

Wednesday, May 7, 2008

Owain's Update

Owain, just a few minutes after his birth.

I am thankful to be able to say that we have some good news today. Yesterday was a good day for Owain, he was stable all day with very few scary moments. Over Monday night he blew out all his IVs in his hands & feet, so they added a centeral line for everything. It was frustrating because they had just started when we got there & we had to wait for hours to see him. But this is good since he is one step closer to surgery.

The issue with his intestines started to clear up yesterday! That is the one thing that was really holding him back from getting surgery.

The whole team working on his case is meeting this morning at 10 & we will then get all the details of exactly what is going on. It looks like we will be able to schedule his surgery for later this week.

I need to correct myself, yesterday I said that it was chronic heart disease when actually his official diganosis is Congenital Heart Defect. There is has just been so much information coming & going from dozens of doctors I got a bit confused.

So Owain has a Congenital Heart Defect. Of course I have spent a fair amount of time beating myself up, thinking that it was something I did, when I know that I did nothing wrong. Every one keeps telling me that there is nothing that could have prevented this, that I did everything right. It is just so hard sometimes to believe that when it was my job to keep him safe & healthy. The doctors have clearly said many times that things like this just happen & that everything will be OK. I am doing everything I can to believe that.

I want to thank every one for their calls & support! I am sorry if I can't call you back right now, please know that I have been getting your messages & call any time. We are not allowed to even have our cell phones on when we are in the PICU, but I have listened to your messages.

I wish I had more time to update, but we have to go now.

I love you all!

Tuesday, May 6, 2008

Owain Ridley Curcio Born May 3rd 2008 & In need of Prayers

It was a week & day late, but little Owain was born at 4:47 on the afternoon of May 3rd 2008, another Boy! Imagine that! He weighed 8 pounds 6 ounces...which for me is HUGE!

A lot has happened since he was born 3 days ago, but I don't have time to sit here & give all the details. A quick recap is that while he was fine when I put him down at 6:30 sunday morning and laid down myself to get some sleep, within less than an hour the pediatrician doing morning rounds noticed that he was dark blue from head to toe.

It was quickly established that he had a heart defect and they ordered a transport team from University of Virgina and he was sent to the NICU with in a few hours.

After several tests & consoltations it has been determined that he has a very rare & complex form of Chronic Heart Disease. His heart is very strong! It is just not wired correctly so that the blood goes into the heart & sent out to the lungs to get reoxygenated. Basically it never gets sent to his lungs and will just recycle through his body. There is a valve that when baby is in utero is open, at that time baby is getting nutrients, blood & oxygen through the umbilical from mom. After he was born, the valve naturally closes up and in a normal heart blood starts getting sent through other valves to reach the lungs. Owain's heart just doesn't have the valves to get the blood to his lungs.

At this point he is being given drugs to keep the valve open that normally closes after birth. He is also on pain meds, a respirator, and several other things to keep him alive until the cardiologists can get a better idea of exactly how his heart works & exactly where every thing goes. He has had several ultrasounds to look at his heart and these have been seen by a wonderful and amazing team of pediatric cardiologists. But when it comes down to it, we are still unclear of exactly which valves go where & what type of surgery will be needed.

I have never been so grateful to live in VA! We are so close to UVA that we can come home at night. The children's hospital at UVA is one of the top in the country & I feel like there is no place better for him to be.

He will need surgery with in the week. At first we were told that he would need open heart surgery this week, followed by another procedure when he is 3-4 months and then again when he is around 3 years. The procedure is complicated, so that is as much as I can get in to it now. We were just told yesterday that there is chance that the first procedure this week could be less invasive & will not need to be full on open heart surgery, but that the following two will be.

He is having issues with his intestines not working properly because his body has chosen to send blood to his major organs and this has caused the intestines to slow down. We can not even think about scheduling surgery until this has cleared up. He has remained stable through the night & now we are just waiting every 4 hours to see the results of the lastest intestinal scan to see if he is getting any better. He is not allowed to eat & is receiving fluids. I have been pumping milk for him as much as possible & he will be getting this milk as soon as he can after surgery.
Last night he got moved from the NICU to the PICU, but that does not mean that he is any less criticial. He is very critical and one of the sickest patients there at the moment.

That is the short version of everything that is going on. We need to get going to see him now.

My three older boys love him very much & are very eager to have him home.

Please keep us in your prayers and thoughts and I will try to post some more updates here when I can. Thank you so much to every one who is helping us & praying for our little Owain!

Saturday, January 5, 2008

Check Out All of My Other Blogs Too!

I have a lot to say ;)

Friday, January 4, 2008

Cancer Resources and Organizations

Thursday, January 3, 2008

Attention-Deficit Hyperactivity Disorder (ADHD) Resources and Organizations

This is a list of some of our favorite ADHD Resources and Organizations. If you know of other great websites that you think should be on this list, please let me know.

Wednesday, January 2, 2008

Congenital Heart Defect Resources and Organizations

This is an on going list of some of my favorite Congenital Heart Defect Resources and Organizations. If you know of another website that you think should be on this list, let me know.

Tuesday, January 1, 2008

Contact Information

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