Cardiac Cath Day 11-16-12

Aili's Cath day....as you know, if you read me earlier post about this a was very nervous/anxious for this day.  I was kind of having a hard time knowing what to pray for initially. I know that God hears and answers prayers, and we can ask for anything, but I also know that he has a plan that we don't completely understand. So after a lot of praying, I got a really strong feeling that I could ask for very specific blessings in my prayers. And that is exactly what I/we did. We asked specifically for them to be able to put the stent in, and for her coronary artery to not be in the way, and not be affected.

Here is how the cath went (my novel):

For those who don't really know what a cardiac catheterization is, here is my dumbed down explanation. It is considered a surgery, but obviously WAY less invasive than open heart surgery. For a lot of people its a same day surgery. They put you to sleep with anesthesia, put a breathing tube in, because you can't breath on your own. They don't want you to move at all...that could be really bad. They enter one of your big arteries threw the groin/upper leg area. They put a little catheter up through the vein and then the can shoot die through your heart to see blood flows, the can measure pressures in different areas, they can put stents in, balloon things open and a lot more. They view everything through an X-ray, and record it all.

On Thursday afternoon we got the call from the cath lab to tell us when we needed to come in. 6 am she said. 6 AM! Sheesh, I thought we would go in early, but I never expected it to be that early! Then then gave us feeding instructions. Stop feeding solids at midnight, stop breast milk at 3:30 and clear liquids at 4:30.

Early That Morning
I wanted to feed Aili right before 3:30 so that she wouldn't be starving to death as we waited in the hospital before her cath. So I set my alarm for 3:20. Then I realized that we probably needed to leave the house around 5:00, and I wanted to shower and get ready so I didn't feel like crap the 2 days we were going to be in the hospital, and I had to get Aili ready arnd her stuff together so that was like an hour, 4:00 so.....there was no use going back to bed after I got up at 3:20.

I went into Aili's room just before 5 am to wake her up and to go. It was so cute and sad. I went in and turned on her lamp, and she immediately rolled onto her stomach and buried her face into her blanket. She was like "Mom! Way to early! What are you doing?!" I let her wake up a little. Then after about a minute of being awake she was as jolly as ever.

Hospital Check-In
We got to the hospital and up to Same Day Surgery to check in. We waited for a while and then were called back to get Aili's weight, height, and little check up. Aili's smart by now and hates everyone in the hospital that tries to do anything to her....even if they just look at her she cries. The nurse told us they wanted to do labs (draw blood) before she went to the cath lab. Basically we said, "Ah no, that is torture, can you please do it after she is asleep in the cath lab?" Luckily she got the approval to do that. Drawing blood from a baby that is away is the WORST! We got her changed into the smallest little hospital gown I have ever seen. Then ween went and waited in another waiting room for the anesthesiologist to come talk to us.

I think people think Aili is older than she really is because of her hair. A child life lady gave her a little doll with a hospital gown and markers to color on her. Aili has no idea what to do with a marker. So Chris colored on her.

The anesthesiologist found us and went through his thing, what the were going to do, risks, questions we had. We were worried now that Aili was WAY more mobile than when she had her surgery how she was going to be with a breathing tube and IVs and everything. He assured us she would be fine. I then asked if I could hold her while they gave her the gas to put her to sleep before they did the IV with anesthesia and breathing tube. I hate the idea of Aili being scared and feeling like we aren't there, so I wanted to be with her until she didn't know if we were there or not. He said that that would be fine, after asking if I was pregnant because I would breath in a little of the gas....ya definitely NOT pregnant!

Cath Lab
2 Nurses then came to take us down to the cath lab. We had been there once before with Aili when she was I think 5 days old. We got down there and had to wait for the anesthesiologist and Dr. Gray (the doc performing the cath). All the ladies in the cath lab were so nice. They were playing peekaboo with Aili and gave her a little stuffed bunny. Aili was laughing and happy. I was so glad!

Aili's hospital toys.

Then the anesthesiologist got there and gave her the little gas mask with some yummy smelling stuff in it to play with while he got set up. I thought that was a great idea. She was chewing on it and smelling it, and getting use to is before be had to put it over her face. Then Dr. Gray came down. He did Aili's other cath right after she was born. Totally love him! He just puts me at ease. He is warm, friendly, normal, and knows how to communicate like a normal person (some doctors can't). If you saw him on the streets you would have no idea he is a brilliant pediatric cardiologist that performs these insanely amazing heart caths, but he is.

We then went in an they gave Aili her sleeping gas. I held her, bounced her and we all sang ABCs and Wheels On The Bus. The nurses all joined in with us. Aili did so well, I was so proud of her. After a couple minutes she went right to sleep, I laid her down, we gave her little kisses and loves, and then left. They gave us a pager and told us it would be a few hours. This was about 7:45am.

We headed over to the cafeteria for some breakfast to wait. The time went by really fast. At one point one of the nurses came through and told us that they had a little trouble getting the cath in initially, but that it was all going well now. At about 10:30 our pager went off and we headed back to the cath lab.

The Results and News
Dr. Gray met us outside the lab when we got there. He took us into a little side room with some computers and we sat down. AH.....nervous!  They had some computer screens in front of us with video/pictures of Aili's cath. First thing he says is, "Well I have got some good news, and bad news." Holy crap how do I feel at this point? I don't even know. He then says, "The good news is, we got the stent in!" We pretty much clapped and cheered. We were so happy! The bad new was that the stenosis (narrowing) was A LOT worse than what they had originally thought. They thought that it was probably just in the conduit where they needed to put the stent, but the stenosis was all in her pulmonary arteries that branch out to the lungs (the ones that were completely reconstructed in surgery). Everything had closed up a lot.

So he started telling us everything they saw and did on the video. Seriously amazing! Her conduit when it was put in was 9mm wide, it had narrowed to 3mm, which was way worse than they had expected. He told us that if they hadn't been able to put the stent they would not let her leave the hospital. Her blood flow was so bad that they would have had to do an open heart surgery before she could leave the hospital again. Super scary. The stent they put in opened the area up to 10mm. He showed us in the video of the cath after they put the stent in how they shot die into her blood to see the blood flow. He showed us where the coronary artery was and where the stent was. It was 1mm away from the stent! It was 1mm away from not being able to be put in. It was 1 mm away from needing open heart surgery. Do you know how small 1mm is? Pick up a ruler and look, it is like nothing.

NOTE: To anyone who is reading this. I can tell you that prayers are answered! God listened to and answered our prayers, our VERY specific prayers! I prayed for that coronary artery to get out of the way, and it did! Just barely....but it did! Our prayers were answered, OUR PRAYERS WERE ANSWERED, OUR PRAYERS WERE ANSWERED!

He then went on to explain what they did for the pulmonary arteries. They went in and ballooned those arteries opened, but just on one side, the right side. When your lungs have been getting so little blood flow, and then all of a sudden they get a lot of blood flow you can get what is called a lung profusion injury. He didn't want to do that to both sides, because it could make her really sick. They actually go in with balloons with razors on them. Ya....razors. That way when they open up the balloons he cuts through some of that scar tissue that has formed, so hopefully it stays opened. He said they would want to have her back in a couple of months to balloon the left side pulmonary arteries. He said after the next cath they will have a better idea of how things are going/holding up....and then I'm guessing a better idea of when she will need her next open heart surgery.

I believe this is dye in her aorta. The 4 loops down the middle are the wires that they put in to hold her chest together after surgery.

I believe this shot with the dye is showing where the coronary artery is. It is the smaller one that goes down to the left corner of the picture.

This is showing the pulmonary blood flow on the right side of her.

The red is circling the stent that is now in place. This pictures is bad quality, but it kind of looks like chicken wire.  This is a side view of the pulmonary blood flow with the dye.

Stent in place, balloon there at the end.

Our next set of prayer is for those pulmonary arteries to stay opened! Then hopefully it will be years, until her next open heart surgery.

Overall, we felt very good with how it went. It wasn't perfect, but went very well. Our prayers were answered, and we were more than grateful for this other miracle for our sweet little Aili.

Recovery
By the time we were done chatting Aili's breathing tube was out and she was up in the ICU. They wanted to watch her in the ICU overnight because of of the work they did, and possibility for lung profusion injury. Dr. Gray said to wait about 10 mins before we went up so they could get her set up. We went out and called our  parents to tell them the news, then headed up.

The girl at the desk said they often like to wait 45 mins before the parents come back, but after she called the nurse, the nurse said, "Send them back right now!" Little bug was NOT happy. She was still a little out of it, but enough to to know her mom and dad weren't there and strangers were bothering her. I scooped her right up and held her. After singing to her a little, she settled right down. She had to keep the leg they put the catheter in straight for 6 hours. Uh ya....can't really tell a 9 month old to keep their leg straight. She would get pretty fussy, so the gave her a drug to calm her down so she would keep her leg straight.

She slept in our arms the rest of the day. We took shifts. Your arms and back would really start to hurt after a while. She would wake up for a minute, and then just pass out again. I was able to nurse her right away, which I was glad...sometimes they make you wait. But she was hungry and it brings her a lot of comfort.

She was crying so hard when we were up at the ICU at the beginning that they had to give her oxygen. Silly bug.

Seal, blanket, and Signing Time.

Aili's nurse was awesome. She had worked there for 31 years. We shared our last experience with the hospital and our frustrations....and we really bonded on that. She had the same frustrations...but from the other end. They do ALL of their charting in a binder, with a pen! Like a pen with ink! Hello! It is almost 2013, I have a computer in my pocket! This is where all of the bad communications comes from in this hospital! You have to pick up this ONE binder to read what is going on with the patient....um....we have things called computers that share information really well....get with the program. But that's the problem they don't have a program that can handle all of the information they need to enter. They use DOS...DOS from the 80s! Do you realize how far we have come from the 80s! If I was a millionaire I would give them all the money they needed to get a new program to do all their charting in. It really is a joke, and I don't understand it. So we and the nurse basically drafted a letter we are going to send to the CEO of Primary Children's telling them about our experience, how amazing Lucille Packard Children's Hospital is at Standford, and how their lack of a computer program is really affecting the patients, their families and the nurses. We could pin point the problem and our frustrations because we had been somewhere else that we loved....a lot of other families don't know anything different. The nurses are just as frustrated. The time the waste that they could be using to actual CARE for their patients. Something needs to be done! If any of you have any ideas let me know! We are writing a letter...or 2 or 3. But who knows if they will listen....I wish they would. This seriously is a problem.

On to Aili's recovery. I "slept" in seriously the most uncomfortable recliner that was ever made in Aili's little room in the ICU. And then good old mother nature decided that after a year and a half of no period that night was the best time to start that again. So my back hurt doubly bad. I maybe slept 2 hours...maybe. Aili actually slept pretty well, in between her being woken up a couple of times. I made sure to bring her seal and one of her blankets she likes. I notices in the past few weeks that she grabs her blankets and puts in up to her mouth and does this cute little sucking motion with her lips and tongue. I think it is how she learned how to put herself asleep. It brings her comfort. So I think having her own blanket really helped.

They did an X-ray at about 4:30 that morning. They did one after the cath, and they wanted one the next morning to see how her lung was doing after the extra blood flow went to it. It looked great that morning. I didn't go back to "sleep" after 4:30 I just grabbed the I-pad and waited. Aili went back to sleep for a couple hours. Then Chris came, (he went and slept at home, lucky duck), and then the doctors started coming in.

Morning after cath. Watching Signing Time again.

By this time Aili was awake and well. Standing up in her crib yelling, and laughing. One doctor came in and said, "ya, I don't think she needs to be in the ICU anymore."

So then it was just us waiting for our discharge papers. Doctor Gray came and talked to us, said her X-ray looked great, she looked great, and that he would see us back in a couple months to do another cath.

Waiting for our discharge papers.

Overall it went very very well! We are very happy. THANK YOU for all of your prayers. Like I said prayers are totally answered. Our little bug is so blessed to have so many miracles in her life. We are going to continue to pray for her pulmonary arteries to stay open and for this next cath to go really well to!

Yay for prayers, that is all I have to say! We will continue to say prayers of gratitude for our little miracle bug.

9 Month Check Up

On November 8th we went to the pediatrician for her 9 month check-up. Aili that week before had just started crawling really well. She had been doing this weird reaching army crawl for a while, but finally got the real thing down. She it quick! It was just like over night. (We thought she might not crawl because she never liked tummy time, and ever since she was 2 months old all she wanted to do was stand.) And then once she could crawl she was pulling herself up on everything. She has more and more personality everyday. She makes the funnest faces, big cheesy smiles showing her two cute teeth, she smacks her lips, motor boats her lips, and sticks her tongue out, all the time! She laughs when you tell her no, or give her a mad face. She had been saying Mamma and Dadda for a while now (Mamma is her favorite). She yells all the time...mostly when shes is standing up. He little voice is so cute. She recognizes the names of some of her toys, especially "seal". She takes horrible naps. If we are lucky there is a total of 2 hours in the day. By the end of the day we are both exhausted. She sleeps pretty good at night. Between hospital stays, getting sick, and teeth coming in it kind of messes her up though. But usually she goes to bed at 8 wakes up once to nurse, then wakes up around 8:30. Not ideal but it works for us right now.

At the doc they asked us the development questions and Aili was doing great. They said she was right on track, even a little ahead. I think it surprises them a little bit every time that her open heart surgery didn't slow her down at all. We gave him the latest update on Aili having to go in for a cath. He said that he would add her to his prays by name. I thought that was really sweet.

Then later that night the sweet bug started getting sick. Annoying how that happens right after you were just at the doctors. It was just a cold. Mostly she just had a really runny nose. Seriously like a faucet. All I can say is thank you Benadryl you are a life saver. This was actually Aili's first cold, so we are pretty lucky I guess. She had the flu when she was a month old but she didn't have any cold symptoms, I think it most just made her hurt and feel like crap. So this cold thing was new for me. It didn't stop her though. She was all over the place and wouldn't rest. No cuddly sick baby for me.

She laid down for maybe 5 mins and watch some cartoons the next morning.

Her are Aili's 9 month stats:

Weight: 15 lbs 11 oz - 5%
Length: 27 in - 30%
Head Circ.: 46 cm - 93%

So we have a skinny, semi short, big headed baby? She seriously is so perfect and beautiful. I love her so much!

Happy 9 Month Zoo Day!

On Wednesday, November 7th Aili turned 9 months old! I'm weeping. Every month you think and say the same thing over and over..."Why do they grow up so fast? Where did my baby go?" But at the same time the are so fun and cute as they get bigger!

Chris decided to take a half day off of work so that we could go to the zoo together. We had been wanted to go for a while, but it just kept not happening. It was going to be a beautiful 70 degrees that day so we decided to do it. It was seriously the most perfect, beautiful day you could ask for. I'm so glad we went. It was the perfect temperature. The zoo had hardly anyone there, and it was winter prices, so you couldn't beat that!

If the animals were close and moving Aili was into it, if not, she was like, "okay what are we looking at? I'm bored."

These seals were are very favorite! They get up there speed and then shoot like a jet through the water upside down.  We bought Aili a little stuffed seal in the gift shop, it is now her favorite toy. If you say, "Go get seal and give her kisses." She finds wherever it is in the room, crawls over to it and puts its nose in her mouth. So cute.

Watching the tigers was depressing. Such a beautiful animal and all the did was pace back and forth. They looked so unhappy.

It was such a great day! I'm glad Chris took the day off and we could celebrate the bug turning 9 months. Really that was a coincidence, but we rolled with it.

Aili's First Halloween!

Halloween was so fun when we were little kids. Then we grew up and couldn't go trick-or-treating, had no reason to dress up, and sat at home doing nothing on Halloween.... Then we have babies so that it can be fun again! Chris told me we couldn't go trick-or-treating with Aili because she was too small and everyone would know we just wanted the candy for ourselves. I'm not really into the planning months in advance what my child is going to be and making/buying something extravagant...especially since she has no idea what it going on.

My aunt gave Aili a little lady bug costume before she was born. We took some pictures of her in it when she was 2 weeks old, but she was way too small for it. So I figured it would be perfect for Halloween.

The Monday before Halloween Aili had her echo that the sedated her for. That afternoon Chris's work was having a little Halloween party for the families. I was hoping she would be awake and feel well enough to go later that afternoon. Once she woke up form her sedation nap she seemed to be okay so we headed over to the office.

We got LOTS of candy trick-or-treating around the office, but it was quite exhausting. I don't think Aili was feeling 100%, and the office was really hot so I didn't feel 100%. But she sure looked cute!

My brother, sister-in-law and nephew were in town visiting before they moved from Boston to Denver. It was fun to have them here for Halloween.

Olin loves Thomas, and Logan's beard is very real, no costume there.

On actual Halloween, which was like the perfect day right? I don't remember a Halloween having such amazing weather. We headed over to my parents house for Halloween soup (named by me, I'm genius). We celebrated a little bit early birthday for my dad, then headed out to hit a couple of the neighbors houses for trick-or-treating. It was more just so we could show people how cute our lady bug was.

Ready to go trick-or-treating!

Then we headed over to grandma and grandpa Mitton's house to rummage threw their candy.

Silly bug.

4 generations.

Family pumpkins.

It was a long night but we had fun! It will be even more fun next year when Aili understands it a little more.

Cath Day

Just got a call from Primary Children's Cath Lab. We will be going on on Friday, November 16th for Aili's cardiac catheterization. They said they will keep her there for 23 hours after to watch her. We aren't sure exactly what time it is going to be at until the day before.

Please pray for my cute little bug!

Aili's Medical Update

So....Blah....Blah, Blah, Blah. That is how I feel right now. And really anxious.

A couple of Mondays ago Aili had a routine cardiologist appointment. Her appointments were getting further and further apart. We hadn't been to any doctor in 3 months. That was way longer than we have ever gone. It was nice. Well in that appointment they all commented on how great she looked. Then he listened to her heart. He told us that the murmur that he had been hearing had gotten quite a bit louder since the last time he saw her. He told us he wanted her to get an echo so that they could get a look at what is going on. We thought that was great, because she hadn't had once since right before she left the hospital in California.

So we headed down to UVRMC this last Monday for our 8 am appointment. We tried to be happy an positive for Aili. We were really nervous though. She was going to be sedated because trying to make a 9 month old lay still for 45 mins to an hour is pretty much impossible, and they wanted to get good pictures. It had been so long since Aili had been poked. I hate it when they give her IVs because they can never get it in the first poke.

Aili was super happy and in a good mood even though we had to wake her up to go to the appointment. That is till we had to pin her down for the IV. It just breaks you heart every time. It will never get easier. We tried our best distracting her. Luckily they got the IV in the second time. The tried in her food at first then put it in the arm. They had looked at the hand to put it in, but then made a comment about how she has so many scars in her hand that it would be too hard. How sad is that?

Once they got the IV in we headed downstairs to get the echo. Once we were down in the echo room they started the sedation medication. Aili was not happy. She was fine if I just held her, but if anyone else even touched her she would cry. Eventually she passed out. Her eyes were, closed but she still knew if someone she didn't want to touch her was touching her. The gave her an extra little does to get her to fall completely asleep. She was still do little moans here and there. Then we sat there in the dark room as the echo technician did his thing. It took around an hour. Then the cardiologist came in. He took a couple more pictures, then started explaining to us what he was seeing.



So they put a cadaver conduit and valve into Aili that leads up to all the reconstruction of her pulmonary arteries that take the blood to the lungs. So the murmur is coming from the area right above the valve. She has some stenosis (narrowing) from some scar tissue and calcium deposits  Is that surprising with all that was done?  I don't think so. I think it has happened a lot faster than they were expecting though. So what that is doing is causing a lot of turbulence in the blood and some back flow....and that isn't good, especially if it keeps getting worse. He told us that it is on the high end of moderate...not quite severe yet.

While he was telling us all of this showing us some of the pictures Chris was standing next to him asking a bunch of questions making sure he understood everything, and I just sat in my chair silent. I was so disappointed, kind of mad, and really trying not to cry. I wanted so badly for everything to just be fine, to look good, to be as normal as possible. But our reality just started flooding back in. All the bad/hard memories, all came back.

He told us that he needed to talk to the cath lab doctor up at Primary Children's and ask him his opinion on what they could do for her in the cath lab. He told us after he talked to him he would call us back to tell us what the plan would be moving forward.

Aili was a complete limp noodle coming off the medication. She just couldn't open her eyes and was so tired. We went home and I put her in her crib and she just slept it off til about 1.



Tuesday morning I woke up and just felt depressed and anxious. I tried to not think about it too much because we didn't really know what was going to happen yet.

Wednesday the Dr. called around 1:00. He told me that he had reviewed Aili's echo with the other doctor and that he thought they could definitely go in and do some stuff to try to help the situation. Ideally what they want to do is put a stent in where it is narrowing to open it up and keep it opened. The problem is that Aili has an abnormal coronary artery that crosses right behind the conduit where they would need to put the stent. It is a very important coronary artery....they call it the "widow maker". So if the stent puts pressure on the coronary artery that is bad and they can't put it in. So they will go in and balloon the area open, if it doesn't cause any problems to the coronary artery they can put the stent in, if it puts pressure on it, they can't.

Now if they can't put it in they will balloon it open for now. No one knows how long that will last. He said that if in the next couple months after it is ballooned it closes up again...then they we are looking at an open heart surgery to replace the conduit.

Now we knew that we were going to have at least one more open heart surgery to replace the conduit when she grew out of it, around 3-5 years. But this would be basically putting the same stupid size back in, and hoping that the same thing doesn't happen to it.

So....we need to PRAY, PRAY, PRAY, PRAY, that they could put that stint in. That the coronary artery will not be effected by it. That way we can push that next open heart surgery further out so they can put a bigger conduit in at that time.

We will be scheduling her cath in the next couple days. He said she will have it in the next few weeks.

I'm just sick to my stomach. I have tired to be really calm and positive, but it is so hard. This will never get easy. My sweet, sweet, beautiful baby....

The other night I asked Chris, "If I had perfect faith, could I heal her?" His reply, "Ya, proabably." Oh how I want perfect faith! I want to heal her so badly you don't even know! Last night I prayed and prayed for another miracle. Aili really has been so blessed, and I am so grateful for that. But we really need a big miracle again. I know God can give us this miracle I know he can. And I'm asking for it, with all the faith I can muster up.

As I started praying for Aili in my prayer with Chris last night I just said her name and started crying....and then I couldn't stop, I just cried and cried. I tried to keep it in, but I couldn't any longer. It was already 1 am but I knew just laying there I wouldn't be able to calm down. So I went and watch the Halloween episode of Ellen. I needed a few laughs. It worked. And then I was able to fall asleep.

So...for anyone who is reading this...that actually just read that whole novel of a post. I would ask you to PLEASE PRAY for my baby again. PLEASE PRAY that they will be able to get the stent in, that it won't cause any problems with that coronary artery, and that this will help the problem so that she doesn't have to have open heart surgery any time soon.

I may not have perfect faith, but I know with all of our faith combined this miracle can happen.

Gardner Village Witches

I had never been to Gardner Village before this year. I always heard about people going there, and heard it was fun and cute during Halloween, decorated with lots of witches. My mom had fall break so she didn't have work last Thursday so we decided to go.....along with every other mother and there children. It was packed! We were hoping for a nice fall weather, but it was really hot that day! In the shade it was nice but in the sun it was hot. I looked at all the ladies wearing their boots and sweaters and just had to laugh, because even though it was fall, it was too hot for boots and sweaters.

We had a lot of fun just wondering around. Aili was a little crazy. She wouldn't take her morning nap, so I was hoping she would take a short nap on the drive up there...nope. Then I was hoping she would fall asleep in the stroller....nope. She didn't even want to sit in the stroller. So she was a little nuts when it hit 3pm with no nap. I sat down and fed her, and she completely passed out on my lap. Dead to the world.

I think I will go again...but maybe not during fall break. Oh and good thing I went with my mom and not Chris. I don't think he would have been entertained by the cute little shops.

Loved all the fun witches.

Beautiful Fall!

This straw was the best part of Aili's day.