Back to SCU 2

I took the kids to the Halloween Party at the church last night.  It was wonderful to be surrounded by such loving  people and to know that they were there for us.

I went to bed thinking that I would get my first night of sleep in my own bed since October 12th.  That did not last long.  I received a phone call early this morning that said Lyra was having drops in her heart rate and was being sent back to the SCU.  I rushed to her side at 2am.

When I got to the hospital, Lyra was sleeping.

She was really cold so she was under lights.  They had a really sci-fi look to them.  It almost looked like our little Lyra was going to be beamed into outer space.

                                                     

Lyra's belly was also really swollen.

She still found her Daddy's finger and held on to it.

They decided that they were going to "tap" her belly.  This means that they take some of the fluid out of her belly with a needle.  It helps to drain a little of it, but it also will tell them if she has an infection in her belly that is causing the swelling.

Lyra doesn't like all these cords and is really working hard to remove them!  You can see the little bandage on her left side where they drained her belly.

Eventually they had to put a feeding tube down her throat.  They tried to put it in her nose and it was just too hard to get it in the right spot because of all the swelling.

She was really unhappy about it!

You can really see how distressed she is in this picture.

 Her Daddy loves her so much.  

Before he came to her and put his hand on her, she was screaming and really stressed out.  Just his touch settled her and put her to sleep.

Green Poop and no NG!

Today is a very exciting day.  Lyra got her foley out this morning.  Her nose tube is also now draining by gravity and not suction.  Perhaps she will get clear fluids today?


Her belly is still really swollen and so are her legs.

We got to hold our beautiful daughter for the first time since her surgery!

The most exciting thing today was that Lyra had her green poop!  The surgeons were very excited to see this and one even danced in the bathroom when he saw it!  This means that her Kasai Procedure is working!

These two have a very special bond.

Lyra also got her NG tube out today!   

One very happy baby.

After getting the NG tube out, Lyra started to have some trouble breathing.  When mommy was holding her, she started making choking noises.  Specialists got called in and it was decided that she might have a little cold or she was irritated from the NG tube.

Love For Lyra Fund!

A New Day!

When I went to bed last night, I was so exhausted, both physically and emotionally. I fell onto the bed with all my clothes on. I didn't wake until about 4:30am, fully dressed right down to my shoes! My husband said that he tried to wake me up 4 times and take my shoes off, but I was too tired to even remember that.

When I got up early this morning, I couldn't wait to see Lyra. I got dressed, and wanted to get to the hospital fast. Daddy wanted to take a shower first so I packed my bags and walked down to the hospital so that he could get ready and bring the car down with him after he finished.

I walked into the picu and I immediately saw that the big ventilator was missing and that Lyra was no longer on the breathing tube! During the night Lyra decided that she was not going to stand for having something hard and plastic shoved down her throat so she arched her back while tilting her head back to get the tube out on her own.

Lyra was doing great this morning and meeting all the goals to getting to go back upstairs. We were told that she was probably going to be moving back to the children's hospital around 2pm. This was great news because we were first told that she was going to stay in the picu for a couple of days.

At 11:17 am, the picu nurse called to let us know that Lyra was being moved back to the Barbara Bush Children's Hospital upstairs. We were really excited to hear this because that meant she was recovering well and no longer needed to have the constant monitoring that she was getting in the picu. It also meant that we would be back up in a room that was comfortable for Mommies and Daddies.

We went out to lunch with Brother Isaac, and Sister Mage. Afterwards, we headed back to the hospital to see Lyra again. By the time we got to the hospital, she was up in her room on the children's floor. They had taken out the IV in her arm, and she only had the IV in her foot that was giving her maintenance fluids.

One of the doctors came in to take a look at her and to do some teaching to the residents and told us that we were waiting to see if her stools changed to green in 7-10 days. If they change to green, then the Kasai procedure was a success for now. If they don't change, then Lyra is going to need a liver transplant soon or she will die.

As the day has went on, she has stirred a little more. She is now opening her eyes and getting a little more uncomfortable. When we can tell that she is really uncomfortable, they give her morphine.

 Her hands and feet were cold so we went and bought her a hat and booties. She also seems to relax when we put a warm blanket on her.

Lyra is also really puffy.  Her body holds on to the fluids that she is getting through the IV's and is making her swell.  Her face and legs are swollen and she looks like a baby Buddha.

Right now she's sleeping comfortably. Hopefully we have a peaceful night.

Kasai Procedure

Monday night we didn't leave the hospital until around 1am. We just wanted to stay and hold our little baby girl while we still could. Reluctantly, we left her and went back to the Ronald McDonald house to sleep for a few hours.

When we got to the hospital early Tuesday morning, Lyra was no longer on formula and could only have pedialite until 9 am, at which time all fluids had to stop. They had also put her IV back in her hand and were giving her maintenance fluids. She was totally fine with not eating until about 8:45 am. When we tried to give her the pedialite, she fought us (it was unflavored), so we tried to give her cherry flavor and she wasn't having any of that either.

Eventually we calmed her by holding her close and she fell asleep feeling our warmth against her naked belly.

A little later, they came in to take her blood in case she needed a transfusion during surgery. They did a heal stick and took the blood that way. She put up a fuss and bloodied her blankets. I don't blame her!

Around noon her nurse came in and told us the OR called to start prepping her for surgery. That's when it really started to get real for us. They started giving her antibiotics and other medications to help fight any infections that she would be at risk for getting during the surgery. Since Lyra would have her belly open and exposed for about 4 hours, they needed to take all the precautions they could to fight it before it begins. Another nurse came in and took more blood from the poor little baby. This time they took it out of her arm. Everyone was confused as to why they had to draw blood twice. Apparently, a doctor put in another order after the first blood was drawn.

While we waited, we took as many pictures of her as we could. We held her, kissed her, told her how much we loved her. We also took pictures of her perfect little belly. After the surgery, she would have a scar that would run almost the entire width of her tummy and we wanted to be able to show her when she was older how her belly looked before.

Around 1pm, a surgical OR orderly came down to get her. We went with her to the room where they put all the patients before their operating room is available. Once in there, the nurses went through her charts, and told us what we could expect. She asked how many children we have and when we said "six" she looked at us and said "Six! No wonder you're so calm." We must have put on a good show because we were absolutely terrified to leave her.

Lyra had really good doctors and most of the head of the pediatric doctors were going to be with her for her surgery. One of her doctors was Dr Kavork! That made us a little nervous, but he assured us he was no relation. :o) While we talked and went over some more of the procedure, and what to expect, Lyra started to fuss and cry again. So, the doctor said that they were just going to take her back to the OR and put her to sleep. He said she would be more comfortable, and they could get her ready easier if she was sleeping. So, we reluctantly kissed her goodbye and left our little girl and her life in the hands of strangers. We were told that it took an hour to just set things up, about an hour to explore and confirm her diagnosis, and then the procedure took an hour and it took half an hour to suture and get her ready for transport. So, they said give them 4.5 hours at least before we start to wonder about how she is. They told us to stay close and took down our cell phone numbers.

As Daddy and I walked back up to Lyra's room, we held hands so tight that I could feel his pulse against my hand. The next couple hours were spent not saying much, and pretty much just looking out the window and waiting to get a call. We were anxious for the phone to ring, but also terrified that it would ring too soon.

At 3:49 pm, we got a call from the nurse in the OR. She told us that they were done exploring, that it was biliary atresia, and that they were going ahead with the Kasai Procedure. Although we knew that she had biliary atresia, they needed to confirm it by looking at the liver. Her liver is green, hard, knobby and she has significant scarring and cirrhosis. The scarring occurs when the bile is not drained from the liver. For some reason, Lyra's bile ducts are blocked and the bile backed up into the liver. Bile is like a detergent and it destroys the liver cells when it is not able to escape and drain into the gall bladder to be stored and squeezed into the intestine. They were not able to see Lyra's gall bladder on the ultrasound. It was pretty much destroyed by the time they got to operate on her. We were also told that she was going to go to the picu (pediatric intensive care unit) when she got out of surgery so that they could keep a closer eye on her.

We told her nurse that she was not going to be coming back up to Barbara Bush Hospital after surgery. After we packed up anything in the room that was not essential and took it to the car, her nurse took us down to the picu so that we could take a tour. It was busy down there, and was really scary to watch people running in and out of rooms. There was also a lot of people (there is adults in the picu too) with wires and hoses coming out of them. We were really scared that Lyra had to go there, and it was scary to think that she was so bad that she had to be in the picu.

At 5:45 pm, the surgeon called and dictated how the surgery went. He told us that they took a little longer with the exploration because they were a little confused by her insides. They found that she has intestinal malrotation: (It occurs in 1 out of 500 babies)

http://kidshealth.org/parent/medical/digestive/malrotation.html

After they fixed her intestines, they also took out her appendix. He said that instead of her appendix being on the right, it was on the left because of the intestinal malrotation. We also learned that she was going to stay on the ventilator because they felt she was too sedated to breathe on her own. It was really horrible for us to hear that because we were told that she wouldn't need the breathing tube after the surgery. We later learned that when they took the tube out, her throat swelled so she needed to have it put back in to keep her airway open.

He told us that she was getting prepped for transport to picu, and that it would be about 20 minutes before we could see her. It ended up being a lot longer and when they called upstairs to tell us we could see her, we took off for the picu. We were so nervous to see her. We didn't know what she would look like, and whether she would have tubes and wires coming out of her. We were terrified because she left us as this perfect little baby, and we were going to be seeing her for the first time with the tubes and wires hooked to her. We really didn't know what to expect and I am sure that hundreds of images of what she would look like passed through both of our heads as we waited to see her for the first time.

When we finally got to the picu, we had to wait to see her while they took x-rays. From outside the room, we could see all the wires coming off of her and we just wanted to run in and see for ourselves that she was ok. When we went in, there was our little baby girl laying there with a ventilator going into her mouth, an epidural tube running into her back, electrodes on her chest, iv in her arm, iv's in her foot to monitor vitals, and her arms were in sleeves to keep her from pulling out her tubes. She also had a foley catheter.  While we were in there, the nurse put a tube in her nose that went down to her stomach to help drain it. Lyra grimaced at that, but we were happy to see her react to something.

After seeing our baby and seeing that she was ok, we decided that we were starving. So, after telling Ed the nurse that we were leaving for the night, we left with kisses and promises to be back in the morning. It was hard to leave her, but I had assurances that she was in good hands. :o)

Tomorrow is the Big Day!

When we came to the hospital today, we weren't sure when Lyra was going to have her surgery.  By mid morning, we got the news that she was going into surgery tomorrow at 1pm.  We were originally told that they would try to squeeze her in Monday night, so we were happy to learn that she was given an actual time, and was not a fill in surgery.

So, tomorrow is her Kasai Procedure. This is our first step on the road to making sure Lyra has a life that is as normal and healthy as possible.  There is a 30% chance that this will not work at all, a 30% chance that this will work and she will need a transplant before she is 2 and a 30% chance that she will need to have a transplant between 10-20 years of age.  Without this procedure, Lyra will not live much longer.  She already has significant scarring on her Liver and Cirrhosis, which will cause her to go into liver failure. About 85% of babies born with Biliary Atresia end up needing a transplant before they are 20.

Lyra is also on the borderline as far as age goes.  Lyra will be 73 days (2 months 11 days, or 10 weeks) old tomorrow.  This procedure works best on babies before 60 days and after 90 days, there is a higher chance that it wont work at all.

We are going from taking our baby girl to the doctor on Thursday for a cold, to finding out on Saturday that she has a life threatening rare illness, to open surgery on Tuesday.

To learn more about this procedure:

http://www.mountnittany.org/wellness-library/healthsheets/documents?ID=6701

Please send all your good thoughts to Lyra tomorrow during this extremely scary time for all of us.

Thank You!

I'm a HAPPY GIRL!

She has Biliary Atresia

Today we got the worst news of our life.  The doctor called us while we were getting ready to go to the hospital to see Lyra.  Lyra has Biliary Atresia.  Her liver is significantly damaged and has significant scarring.  She has cirrhosis and will eventually require a liver transplant.

Our worst nightmare had been confirmed.  This is the last thing we wanted to hear.  We could have held out hope that there was something else wrong with our baby, but we would have been lying to ourselves if we didn't already know in our hearts that this is what we were going to be told today.

Lyra is going to have a procedure to try to attach her liver to her intestines, bypass the gallbladder, and drain the bile directly into her intestine.  This procedure is most sucessful in babies less than 90 days old.  Lyra is 70 days old and it works better in children younger than her.  If the procedure does not work, she is going to need a liver transplant.

Unfortunately, she will eventually need one anyway.  Her liver is significantly damaged, and she will eventually go into liver failure.

One of her brothers and her sisters came to see her today.  They were all very excited to see her.  The morning Lyra left for the hospital, they had no idea that she would not be coming home.

This is Lyra with her big sister Oracle!

5 out of 6 of our kids.  We are missing her other brother Evan.

He was probably telling her a joke that she didn't get. :)

This is our little Mage.  She was doesn't look like her Daddy at all!