Irelyn's Surgery

When I was 20 weeks pregnant with Irelyn, in December of 2007, they found cysts on her lungs called CCAM. Since then we have met with several doctors and came to learn before she was even born that she would inevitably have to have surgery. We were told it would be a one time deal, that once the cysts were out they were gone forever. However, the only way to fully remove the cysts was to remove the entire half of her right lung. On December 2nd, we finally got Irey into surgery and started putting this ordeal behind us.

You would think scheduling a surgery wouldn't be so complicated. Unfortunately for us, nothing can ever be this simple. We decided in June of 2009 that Irey was at the perfect age to go ahead with the surgery. We scheduled it for September and were eager to be done with it. But then our surgeon, who we love, broke his neck and wasn't operating until further notice. So then we had to go meet with a NEW doctor who was the opposite (not in a good way, at all) of our beloved Dr. Downey and I didn't feel good about him doing Irey's surgery. We decided to wait until Dr. Downey was ready to to surgeries again because he knew our file and CCAM can be very controversial so we liked that we were all on the same page.

Finally in November Dr. Downey is operating again. November 2nd we schedule the surgery, October 30th Irey gets croup and we had to cancel. I cried, and we rescheduled. To my utter disbelief, we made it to our 3rd surgery date with out any bumps in the road!

I took Irey up to the hospital on December 1st, the day before surgery, to do lab work. Then we show up at 7 am to Primary Children's Hospital the next day ready for surgery at 9 am. Although, while we were ready and waiting to go back to OR, the nurse comes in and said some of the antibodies in Irey's blood was unusual and they will have to do a more extensive test. Since she already had one arm poked from the day before they decided to go ahead and get the IV started and get blood that way.

Then the waiting game began.

We did the best we could to keep a baby who hadn't eaten since 8 pm the night before happy! She was such a trooper.

8 o'clock, 9 o'clock.... still no results. 10 o'clock the nurses are fighting with the lab people because they want MORE blood and the poor nurses didn't want to poke Irey AGAIN! Well the nurses lost the battle with the Lab Tech and Irey's other arm was poked for more blood.

More waiting... 11 o'clock.... 12 o'clock... keep in mind she has a completely empty tummy and should be ornerier then heck but she was such a sweetheart. She took a good nap and ran around the hospital pushing the wagon with her baby doll in it (while in her cute hospital gown) telling every staff member she saw, "Bye, Bye!" in her sweet little voice! Giving everyone a good laugh!

She was entertaining us while we were waiting for hours. We would pull her around in the wagon and play with all the cool toys... she acted like we were at Disneyland, she loved it!

FINALLY, 1 o'clock rolls around and her blood work was back and they were ready for surgery! They let Brandon and I push her to the OR in her car that she loved (and wouldn't get out of). We left her at the doors and then the nurses took her the rest of the way, still in her car all the way to the table.

My arms felt terribly empty and I stated to cry. She was so happy on her way in there, it was just tearing me up that soon she would be alone with out mom to comfort her. I prayed really hard. I have to say I felt so much comfort knowing my Heavenly Father was there, holding her when I couldn't, kissing her when I couldn't, and being her comforter when I couldn't. It's times like these I am glad to know of my Heavenly Father's love for his children.

We waited in a waiting room where the OR nurse would call and give you updates through out the surgery.

Now with the surgery the plan was to collapse her right lung (where the cysts were) and have her breath off her left lung while they go in with a scope through three small incisions under her right armpit. The tricky part was going to get her to breath off of one lung because babies have a harder time with this then adults.

They called us at 2 o'clock and said they were in and she was breathing off her left lung great and they were about to start surgery.

Then we waited some more.... I was feeling good!

Then they called at 4 o'clock. They were two stitches away from being done when her right lung started to fill up with air. They had to back out and try to get the right lung collapsed again. They tried 3 times and couldn't get it to go down. At this point the only other choice was to go in open chest. This was something I feared because the pain and recovery was so much longer. When they were telling me this over the phone I lost it. Then the continued to tell me that they needed to give her a epidural to best manage her pain the next few days. For reasons I didn't understand, they only had one shot to get it in and if they didn't her pain would be difficult to manage. The doctor asked me to pray for her, not so comforting...

More praying, more waiting.

5: 30 rolls around, they call me back to OR, surgery is finished after four and a half hours!

One of the worst things for a mother is to see her child in pain... I was a mess on the inside from the start but trying to be strong on the outside for my baby who would moan and groan in pain.

She had a chest tube on her side to drain fluid from her lung, two other holes from the scope, and then a incision about four inches running horizontally underneath her shoulder blade from the open chest operation. As well as oxygen and more wires and tubes then I could count. They got so twisted and tangled by the time we left I knew how to unhook and re hook ALL of them. Every mom should go to nursing school I decided!

They next four days were LONG and EMOTIONAL! Irey was a mess for the next two and half days. That night after surgery she had a allergic reaction to a antibiotic and was itching from her epidural. Her face broke out in a rash and her lips swelled up to twice the normal size as well as her eyes swelling shut. So they took her off both and gave her morphine for the pain. But her body was adapting to it fast and they had to keep upping the doses and lowering the time in between, to the point she was taking 1.5 ml of morphine every two hours. And it still wasn't enough. She was so uncomfortable and in so much pain. About day three they figured it out and got the pain under control.

The only comfort to her, for reasons I cant understand, was chapstick. She would hold the lid in one hand and chapstick on the other and if it fell while she was sleeping she would wake up and cry for it to be put in her hand again. One of the nurses even went to the pharmacy and got her chapstick so we would be sure not to run out. She would rub it ALL over her face and anyones else who got to close.

I dont think I slept more then 3 hours a night while at the hospital. Most of the night she would want to be rocked and be close to me to be comforted. I would rock her for as long as I could until my arms felt like they literally couldn't hold her anymore. Then I would put her in the crib, untangle all the wires, and sleep for about 30 min. to a hour intervals until I would wake up and help Irey with her oxygen or whatever.

Irey had to have her oxygen most of our stay at the hospital. When she would get upset or if she was in too much pain she would hold her breath or forget to breath and her oxygen levels (which are suppose to stay above 90) would drop to 35-45 and her heart rate (which is suppose to ALWAYS be above 75) would drop to 70. There were a few time her face would turn blue and she wouldn't breath and all the nurses would come running in and yell at her to breath. This would always happen in the middle of the night when I was alone. Luky me!

These were the times as a mom, I should have broke out into tears and fallen into pieces. Strangely, these were the times I felt most calm. I just knew the nurses would get her to breath and I wouldn't panic. I felt at peace and like I was being held up. I have never known a harder experience yet in my life then this and yet I have never felt my Heavenly Father's love surround me more. It was at mine and Irey's worst moments I was most comforted. It was those times I felt every prayer everyone had said for our family. So for those who prayed for us, Thank You, they were answered!

I am also blessed with a husband who is beyond words, just simply wonderful. Irey and I would have been hopeless with out him. There as even one night I couldn't get her to to relax and keep her oxygen up, she kept asking for dada. Well just then Brandon calls, I put him and speaker and he talked to her for 5 min. and just hearing his voice made her relax and fall asleep. His voice has that way of soothing both of us! I just don't know what us girls would do with out that man of ours!

And of course there were the wonderful grandmas who came up every day and sat with Irey while Brandon and I would go take a walk and get food or rest! I can't say enough about how much Irey LOVES her grandmas! They were such a comfort to her and they definitely made things a lot easier. Irey got a break from my hovering and I got a break from everything else. Mom and Brenda, Thanks for the love, support, and food.

And of course all our family came to see her. It was great to have visitors! Even though Amy and Jamie cried and made me all emotional, it was really nice to see familiar faces and to have someone who I know and love to suffer through with me! So thanks family for your love, support, and tears. Ams and James thanks for the monkey, Irey loves it!

We seriously slept wherever, whenever we could... that was a great little nap!

Once Irey was feeling better the task became not making her comfortable but keeping her entertained! She was really antsy to leave and was so sick of her hospital bed! She was too weak still to walk on day three so we just kept her in her wagon which she later slept in. She also had dolls, stickers, and mac and cheese to keep her occupied.

By day four she was cleared to go and we were all more then ready. While we waited for paper work, Irey walked up and down the halls, yet again, saying "Bye, Bye" to all the staff. She was ready more then anyone to be done!

Now we are home and the surgery was about a week and half ago. Irey is recovering well. She acts completely normal as if nothing ever happened. She was in pain for a few days but now she isn't even taking her pain meds anymore. Other then some really awesome scars, you would never know she went through this ordeal and is walking around with half a lung.

I have said it from Irey's day one, when she was only a few hours old and was able to hold her head up, she is the strongest kid, made to endure! Every nurse who has ever tried to hold her down (sadly, a lot) has walked away laughing because she is little but she has got a strong body.

I couldn't be more proud of how enduring she was. She was so good natured the whole time. I know that she has a extra special Angel Carson watching over her. I know that she was in good hands and I couldn't be more grateful to have that blessing in my life.

This was to date one of the hardest things I personally had to go through. To some this might seem like no big deal but to me this was a new kind of challenge. I am so grateful to have my Savior. I have something more to celebrate this Christmas. I know that through him we can endure all things. I know that my Heavenly Father knows more then anyone what pain is to watch a child suffer and I have felt his mercy and his love enfold my little family.