Finally an encouraging day

Since Ivy's emergency surgery last Monday, I've been a little discouraged. They have told us nearly everyday since Wednesday or Thursday that she would get her breathing tube out "tomorrow" and it just didn't happen. They told us that she should progress faster from her second surgery since she had done it once, but it didn't seem to be going any faster to us. I have to admit that I was getting a little depressed and cried a few times for really no reason. But finally today we got some good news when we walked in the door. The nurse was sitting in a rocking chair holding our little Ivy, who didn't have a breathing tube or the IV's in her heart or the drainage tubes in her chest. She looked so great! We immediately washed our hands and took the baby from the nurse. I held her for a good hour and a half, then Scott took a turn and held for about the same amount of time. It was just what I needed to chase the blues away!





Also, while we were there a genetics expert came and asked us to take part in a study, I won't go into detail but he needed to take a DNA sample from both Scott and I and Ivy as well. In case you don't already know, Scott is terrified of needles (even though he has never had his blood drawn) and he wanted nothing to do with the study. I talked him into since it would help people in the future, and forced him to get his blood drawn. He took it like a trooper and didn't cry, puke, or pass out. What a man!!

extubation is tomorrow.....maybe.

So everyday since about monday we have heard from all the nurses and nurse practitioners that Ivy will get her breathing tube out "tomorrow". Tomorrow has come and gone several times now, and no extubation. Last night we heard from the nurse practitioner that they would do another spontaneous breathing trial (turn her breathing tube off and let her breathe on her own) today at 5:00am and if she did well, out it would come. So, we called this morning at about 9:00am and she had done very well on her trial...but surprise surprise, they aren't going to take it out because her lungs are "wet", maybe tomorrow. They may not even take it out at all because her other surgery is coming up and they don't want to re-put it in. But, the longer it stays in, the harder it is for her to adjust without it, its starting to get on my nerves. I know they are trying to do whats best for her, but it is hard to stand by and watch nothing happen day after day. I am just hoping her lungs will "dry out" so we can get that thing out and not have to watch her gag on it anymore.

Reason for Thanks

We just wanted to thank everyone for your loving comments and concern for our little family. Things have been going well since Ivy's emergency surgery on monday. She is progressing faster this time and the outlook is good. Hopefully we will be hearing when her next surgery will be after the holiday weekend. We will let everyone know as soon as we know. Thanks again for everything, have a happy thanksgiving!

A Big Setback

Well, today was not as good as yesterday. Actually, it was pretty rough for all of us. We started off to the hospital today with both Corbin and Dexter sobbing for us to stay with them. They are so tired of us leaving them everyday. It broke both our hearts to hear them so sad. It is very hard on our sweet boys to have their parents leave them everyday to visit their sister that the never get to see.

When we made it to the hospital at about 11:30am, Ivy's room was full of doctors all running around frantically. One nurse told us that Ivy had been having some trouble breathing earlier so they had decided to take an x-ray of her chest to see if she had some fluid in her lungs. On the x-ray they noticed a dark spot in the piece of tube they had added during her surgery a week and a half ago. They did an Echo scan to verify and they believed it was a blood clot. The tube basically allows blood to get from the heart to the lungs and if the clot were to get any bigger or break free, it would be catastrophic. So they told us that they needed to take her into emergency surgery and remove the clot. They said she would get all the tubes, wires, and IV's that she has worked so hard to get out, all put back in. It was very devastating to us. They put the breathing tube back in and prepared her to go back to the operating room. The surgeons told us that this operation was a lot more risky than the first one, because her body is still trying to recover. They did not know how her little body was going to handle it. They put her on blood thinners to try to prevent the clot from getting worse. They said if the clot were to break free during the operation, it could cause cardiac arrest or massive bleeding.

After a few hours of her being in the OR, the surgeons informed us that they were able to re-open the chest, re-open the ribcage, and take a look at the tube. To everyone's relief, it was not a clot! There was just a peice of the tube folding over onto itself. This was still something that needed to be fixed so it was good that they did the surgery. They told us that she was having a bleeding problem though (I believe it was because of the blood thinners) so they still had to get that under controll. After the bleeding was taken care of, they let us see her. She was very swollen again, she had the jugular IV back in, she had the heart IV's and heart pacemaker wires back in. She only had 2 drainage tubes instead of 4 this time, and they were able to close up her chest immediatley this time, so it is a little better. Basically she is back to where she was last monday and she is going to have to go through all that healing again. Please pray for our baby Ivy to have the strength to do it all again. Pray for our boys to be strong too. Thank you all for your love and support.

Ivy Pics

We decided to post some pics of Ivy since we haven't done very many. We also have some good news, Ivy had the IV's and pacemaker wires removed from her heart last night, so after 13 days of not holding her, we were able to. It was a very pleasant surprise.

2 Weeks Old

Today was Ivy's 2 week birthday. She is awake a lot more now, and is doing really well. She is down to just 2 medications and 2 flushes, and got her last drainage tube taken out today. She was also extubated today (breathing tube removed), and is doing really well breathing on her own. They put a little oxygen tube in her nose, but it is basically just blowing air into her nose to help her a little bit, but that should be removed tomorrow. She still has the RA lines in her heart, so we can't hold her until those are removed but it is definately getting close. They also told us that her surgery on her intestines should be next week. We happened to be there while they changed her linens, and they also wanted to give her a bath, so they asked if I wanted to help, and I was delighted. That was fun, it made me feel like I really am her mom. It was another good day for all of us.

We also realized today that we never really said exactly what conditions Ivy has. We have found when we are vague about what she has (i.e. heterotaxy) everyone says, "I know someone who has that and they lived to be 80 years old!" It gets a little irritating. Ivy actually has five different defects and the odds of anyone knowing someone else with the same exact five defects is very rare, especially since some aren't even related to each other. Okay, so here are her conditions, the first 2 are heart related, although unrelated to each other, and the last three have to do with the heterotaxy, which is unrelated to both heart defects.
1)partial hypoplastic left heart syndrome (this is when the left pumping chamber, the one that pumps blood to the entire body, is under-developed.)
2)Coartation of the aortic arch (which is a significant narrowing in the aorta, causing blood flow blockage)
3)asplenia (no spleen)
4)liver is on the wrong side
5)malrotation of the intestines

So she has already had open heart surgery to re-route the way blood is pumped by her heart, but she will need two more surgeries to complete the reconstruction. One when she is about 6 months and one between 2 and 3 years old. At the same time as the first surgery they also fixed the coartation of the aortic arch, and that shouldn't require any future procedures. Before she gets to come home she will have to have one more surgery to fix the malrotation of the intestines. The liver being on the wrong side doesn't really pose a problem and the asplenia means she will be more susceptible to illness and infection and will have to be on some medication for the rest of her life.

So now you know, I hope you feel more educated. Have a good day!

A Good Day

Another good day for sweet little Ivy. Yesterday she had a feeding tube placed in her nose and down to her intestines. They started feeding her my breast milk (finally), only 1 cc at a time (a VERY small amount) to see if she handles it okay. Today they increased the amount to 2 cc's and will increase it by 1 cc every 12 hours from now on, so she must be tolerating it okay. A couple of other big steps happened today. She had 3 drainage tubes in her body, to drain excess fluid and blood, but today they took out the 2 smaller tubes, which was so great. They also removed her catheter so she can pee on her own again. Later this evening they are also going to remove the IV that has been in her belly button since birth, and they decreased the amount of air going into her oxygen tube, and are hoping to be able to take it out in a day or two. We are really excited for that to happen since it means we can hold her again. Anyway in a matter of about 3 days she has lost 6 tubes/cords and only gained a feeding tube. Hopefully things continue to go this well.