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.

Wolverine Baby!

Morning of initial surgery (November 13, before they opened her up)

After her 4 day recovery, (swelling already gone down, you didn't want to see that) chest still open, notice the gauze tuxedo (November 17 morning)

After chest was closed (November 17 afternoon)

Ivy had a good day today. She finally had her chest closed so now the healing can begin. We arrived at the hospital very early because the doctors said she would likely be the first case of the day, but when we got there they informed us she wouldn't be anymore. They bumped her to the afternoon, so we hung out with her all day. Getting out of bed so early wasn't a total loss because while we were waiting, she woke up! It was the first time we have really seen her eyes open in over a week. We were so excited to get to talk to her and touch her while she looked back at us. Finally at about 2:00 the operating staff showed up to turn her little room into a mini operating room by making it sterile, taping it off, and of course, kicking us out. We returned about two hours later and she was done. Her little gauze tuxedo was gone and replaced with just a small layer of regular gauze, and we felt like we could see her again. The doctor and nurses said that everything went according to plan and they didn't have any problems, thank goodness. Scott joked that she was like wolverine because she has an amazing healing time (she had some sores from a blood pressure cuff a few days ago that healed very quickly). He thinks the doctors put Adamantium in her body during surgery, thus wolverine baby. He's kind of a dork, in case you didn't already know. Anyway, they also removed the IV from her jugular vein in her neck, which had been grossing us out for days, so we were happy to see it gone! Now she has a week or two of recovery until her next surgery, we should see medications deminish from now on. Thanks for the support, we look forward to a quick recovery. Thanks to the X-men!

Recovery Begins

Sorry about the late update, but what can I say, I'm a busy girl. Ivy is doing very well today. Her swelling has gone down significantly, and her bleeding has pretty much stopped. She even tried to open her eyes and see us today, but they are still a little too swollen to open very far. All the doctors and nurses say that she is doing very well. They will probably be able to close her chest back up after the weekend, as long as everything continues to move forward. It's hard to see her past all the cords and tubes, but she is still super cute, and we just love being with her. One of the hardest things for me right now is just not being able to hold her. I have only been able to hold her 3 times since she was born, and it is a hard thing to deal with sometimes. But we can still talk to her and touch her and let her know we are there. I think she recognizes our voices, she always seems to breath a little faster, and open her eyes (at least try to open them) we she hears us talking to her. Hopefully everything continues to go well. We are basically just watching her progress, and we will keep you posted on anything significant.

Operation Ivy

Hey everyone, Scott's turn to post! Well, today was the big day. We came to the hospital at about 6:30am and got to spend about 45 minutes with Ivy before they wheeled her into surgery. We waited for a few hours and got the first update that she was doing well. About 2 hours later we got another update that, once again, things were going well. We went to the cafeteria at about 12:30 and got some lunch. When we got back about 1:00, they told us that the surgery was done and that the surgeon would come speak to us soon. He told us that there was one small issue with one of her valves, but nothing too serious as long as they keep an eye on it. About an hour later, we were able to finally see our beautiful baby girl. She was a little swollen, but still very beautiful! We were shocked to see that so many tubes could fit into such a tiny baby. She has multiple drainage tubes, several IV's, oxygen and feeding tubes, and at least 11 different medications all being pumped in at the same time. She was struggling a little bit right after the surgery, but over the last few hours has been improving steadily. The doctors and surgeons all say that she is looking good. Because the first 24-48 hours are the most crucial, Rochelle is going to spend the night with her in the hospital. Thank you all for your continued support and prayers. We love you.

The Day we've been waiting for

Today we finally got the news we've been waiting for. The doctors got enough information from the MRI, X-rays, and Echocardiograms that they are confident enough to perform surgery. Ivy will be the first surgery of the day tomorrow morning at about 7:00am and it should take approximately 7-8 hours before it is over. There are three main parts of surgery that the doctor needs to do, which I won't go in detail about (mainly because it is tons of information) but the overall theme of the operation is to make the heart much more functional for the time being (until her next surgery in 4 or 5 months). The doctor seemed very confident and I believe he will do a very good job.
Thanks everyone for respecting our wishes to be left alone during such a difficult and busy time. We will try our best to keep you all updated. Tomorrow is a huge day for us and we are lucky to have so many people in our corner. Please pray for our precious baby girl.

News of Surgery

Ivy had her MRI today for the doctors to get a better look at what is going on with her heart so they can plan for surgery. They discovered that her aortic arch isn't fully interrupted, it just gets smaller. It doesn't change what they are going to do, just how they are going to do it (if that makes any sense). They are planning for her surgery to be Thursday morning, because tomorrow morning they have a meeting to discuss the specifics. Of course the surgery could always change, but we are hoping this time that they are ready. We will keep you posted.

Ivy's latest update

Hello family and friends. Ivy is still doing very good. Today at the hospital, we found out that her heart surgery is now no longer scheduled for tuesday. After another chest scanning, the cardiologists decided that they wanted to have an MRI scan done to make sure they are not missing anything. She was not able to have the scan done monday so she will have it done on tuesday at 3:00 pm. Hopefully they will be able to see everything they need to see so they can take the best course of action. The surgery will most likely be wednesday now, but there are no guarantees. We will update again as soon as we can. Thank you all so much for your support and love during this time. We love you Ivy!

P.S. If you send us a text or try to call us, please don't be offended if you don't receive a response. We don't want to repeat the same update multiple times. Just keep checking the blog! Thanks.

Piggies don't eat people, they eat sticks!

We thought we would post another video of Ivy from the last few times we went to visit. Enjoy!



The title really doesn't have anything to do with this post, it was just something funny that Corbin said.
We haven't been posting a lot lately because there hasn't been anything new happening for a while. Ivy is just slowly getting better as the days go on. Our family had been sick for a few days and had to stay away from the hospital. We finally got to go back yesterday and our sweet baby is looking great! We are waiting for her to completely heal and then she will have her next surgery, hopefully next week. We are still hoping she will at least be out of the hospital by Christmas.

Introducing....

Ivy Maxine Brunson



Ivy joined our little family on Friday, November 7 at 2:13pm. She weighed in at 6 lbs 14 oz and was just 18 inches long. Our biggest baby so far. I was able to stick out the relatively short labor without any pain medication (although I regretted it in the last few moments of her delivery). She came out screaming, but looked great with lots of dark curly hair. The NICU nurses instantly took her through a window in the wall into another room to check all that high-risk newborn stuff and I was only able to see her for about 7 seconds. Scott was able to see her a little more while I was being stitched up and all that other fun stuff that happens after the baby is born.
I was finally able to see Ivy and kiss her cute little head a few hours later in the NICU, she was so beautiful. I didn't want to leave her there, but I knew she was in good hands. I returned a few hours later to visit again and was finally able to hold my baby in my arms. I can't describe the overwhelming joy that I felt at the time, but it is an amazing feeling. Scott was able to hold her after me, and it made the last three months of uncertainty worth it for both of us.
On Saturday the doctors told us that the ultrasound on her abdominal area showed that she most likely does not have a spleen and that her liver is on the wrong side. Later that day they did another test that included feeding her a dyed substance to show them if her intestines were twisted, they were, its known as mal-rotation of the intestines. Although they are twisted she still has a clear path from mouth to bottom so she is not in need of immediate surgery to fix it (more on that at a later date). Since she has the clear path, the doctors gave the okay for me to try to nurse her. I cried a little because it was such great news. I tried to feed her at that time, however she was too sleepy and wouldn't try. A few hours later we tried again, and this time she took a few swallows before falling asleep for the second time. So it didn't really work out, but it was nice to try. The nurse told me to come back on Sunday morning to try again.
On Sunday morning Scott and I arrived in the NICU right as the doctors were removing an oxygen tube from her nose. They told us that overnight she had begun breathing too rapidly so they were trying to calm it down with oxygen. It didn't really work so they removed the tube. She is still breathing on her own, but every once and a while she will breath really fast. All this means that I no longer get to nurse her because of the risk of her choking. I am still pumping though, and saving my milk for a later time.
The doctors have scheduled her heart surgery (to repair her aortic arch) for Tuesday morning. She will not get to eat again until after the surgery, but is receiving nutrition from her IV. Also, She was moved from the NICU to the PICU Sunday afternoon (which only means she is closer to the Cardiologists now). We are very pleased with how well she is doing right now, and are praying for the best possible outcome for her surgery. We will update when more info is available and have time to post. Thank you everyone for your support. We love you Ivy! You are such a sweet angel.

The Big Day

It is officially the big day! In about seven hours Scott and I are due at the University Hospital in SLC to be induced to have our sweet baby girl. I should be sleeping, but of course, I can't. I don't think I have ever been so nervous in my life. In anticipation of this day, Scott and I have done a lot of praying and fasting with our family and friends (I pray, not fast, I am pregnant after all), and have tried very hard to remain optimistic. On Tuesday we went to the Jordan River Temple, just the two of us, and sat in the celestial room, just hoping for some peace. It was really nice and comforting for us, and I am thankful that we were able to do it. Scott, my dad, and my father-in-law also gave me a blessing tonight, and afterwards the two dads gave Scott a blessing as well. We are very scared about everything tomorrow, but are willing to accept God's will. We just wanted to thank everyone who has helped us in any way over these last few difficult months, even if it was just through prayer. It really means the world to us that so many people really care. We also want to thank everyone for being patient and understanding when we shut everyone out to deal with things on our own, and for respecting our wishes when we didn't want to talk about it. We love you all and appreciate all the support we have been given.

On a different note, since today was my last day being pregnant with this baby we decided to take a few belly photos for posterity. While I was pregnant with Dex we did some pics of Corbin kissing my belly, so we thought it would be fun to do that again. So if you don't like seeing stretch marks, don't look (I am covered with them), but if you don't mind enjoy. I think the pics turned out very cute.