Aaliyah and her ALCAPA repair story

Aaliyah was 3.5 weeks old when she started to demonstrate colic like symptoms. As the weeks went by they seemed to get worse. She would be fussy during the day and screaming bloody murder by night making evening time hours hard and frustrating. When she was 7 weeks old she was having a screaming episode and she turned pale and clammy. I didn't like it at all and got a gut wrenching feeling. I googled colicky,pale,clammy,gassy, etc. into the google bar and read it could be caused by anxiety. Figuring she was having gas pains and had anxiety I took it as a mental note. I would have made her a doctors appointment but she had one scheduled the following Tuesday.
 Tuesday January 11th 2011 I took Aaliyah in for her 2 month check up to get her shots. I went in there with the intention to get some answers on why my baby was so painful and ready to tell her the millions of things I have already tried as a breastfeeding mother. I presented her with this list of symptoms: Extreme episodes of screaming from 6pm to 10 or later, spit up after 2 hours of feedings,a dry cough with no running nose or wet sounding, no fever, she seemed very painful, hated to lay flat and how she would sleep better on an incline, She had an episode of going pale and clammy. The doctor examined her mentioning meds that may help her colicky symptoms, and acid reflux. As she examined her she was watching her breathe and asked me "How long has she been breathing like this with this grunt?" I said she always has been a grunter. She is always trying to push gas out and always grunting. She asked me to come over and look at her with her. I then saw something I had missed. It was obvious that my daughter was working harder to breathe on the left side. The side of her chest was going in more so then the other side. I felt like an idiot for not seeing this and relating the grunting to pushing out gas rather then breathing. The doctor decided she wanted to get a chest x-ray and blood draws to rule out rsv and pneumonia. The doctor came back in about 15 mins later letting me know the blood test for rsv for neg but wanting me to come and look at her x-ray. She then pointed to her heart and said it appeared to be enlarged with a shadow behind it representing possible fluid. She also pointed to her liver saying it also looked enlarged. She then explained to me that it could be pneumonia but she wanted me to go to the hospital for observation for the night. She said she would feel better and that we would both sleep better if we just used a bit of precaution. We got to the hospital and got admitted where they ran ekg's, blood draws and tried to start an iv and failed a few times. We went down for an echo and Aaliyah was extremely fussy and didn't hold still very well so the results were inconclusive. I left the room and ate my dinner as they were trying to stat an iv again for this was too hard for me to observe and heard a doctor talking about transporting a patient to Portland. I looked at the secretary and whispered.... me???? she said yes. The doctor came in to let me know her blood gases were acidic and that he thought it was a heart defect rather then pneumonia. We were being transferred to Portland that night by private car.
We made it to Portland and got settled in for the night. We had a double room with extremely loud roommates , but  we made due and eventually the staff got us into another room and we slept a few hours while waiting for the doctor.
January 12th 2011 (my birthday) is a day I will never forget. The pediatric cardiologist came in to meet us and told us he wanted to do another echo. After doing one he then told us our daughter has ALCAPA. It is where the left coronary artery is attached to the pulmonary artery instead of the aorta and we would need open heart surgery to fix it.  It was a Wednesday when I heard the news and that Friday my 9 week old daughter will be having open heart surgery. I was overwhelmed by the news I heard and couldn't believe that my baby was going to go through this. This was not the worst part of the day though, the worst was about to come.
Aaliyah needed an IV start and the nurses tried desperately to get one in and failed numerous times. I couldn't watch because Aaliyah was screaming and it was upsetting me to a point that I had to either walk away or throw a tantrum. They took Aaliyah to the treatment room to try again and then returned once again with no IV. I looked at my little girl who looked pale, clammy, and even mottled looking in the legs. Aaliyah was then rushed to the ICU to be monitored more closely. For the first time I saw my daughter looking extremely ill and as if she was dying. These images of her looking pale, gray and clammy haunt me. While in ICU they tried a few more times and I felt me getting ready to yell STOP. I was lucky to have a nurse decide it was enough and said the words right out of my mouth. They were going to do a central line instead. Thank you, thank you. This was the one and only time I thought I was going to lose my daughter was with them trying to start an IV and having her heart rate go to nearly the 200's  and her o2 levels dropping every time she would cry.
They got the central line in and things started to calm down. She looked a little better and they began to give her heart meds to help her heart not work as hard. She then was stabilized and was looking better. The ICU staff was very supportive we had a case worker, awesome nurses, doctors ect. I then saw pastoral care come in shortly after and my anxiety went up. I know they are there to support family but  a part of me was wondering if they were there to prepare us. I then recollected myself and knew better and knew they were there to support us rather then my other racing thoughts.
January 13th 2011 was a day of rest. Aaliyah was looking good today and the heart meds were working their magic. This was the day all our family started coming up and showing support. I was so blessed to have my family there and have never needed them as much as I needed them then. Aaliyah remained stable for the day and was eating like a champ. It was so nice to see her doing so well after the day she had the day before. As the day went on though my anxiety went up thinking about what was coming the next day. She would be NPO at 4am the following morning and we had to try and keep her calm. whenever she would cry her heart rate went up and her o2 saturation went down. I didn't sleep that night because the anticipation of the surgery was eating at me. Her surgery was scheduled at noon the following day. I just wanted to make today last as long as possible but it seemed to be flying by.
January 14th 2011....The day of Surgery..... 4am came around where i got done with her last feeding before the surgery. Our goal was to keep her asleep as long as possible for the best interest of Aaliyah. we did not want her to get upset and become unstable. It was suggested to us that it might be better for my husband to hold her so she wouldn't smell my milk and make her want to eat. This was extremely hard but I didn't want to do anything to make her stressed out. My two sons came in for the first time that day and met me out in the hallway. They set up a table and had dolls to show the boys what the doctors were going to do to their sister and explained all the tubes that were going to be in place. It was such an awesome thing they did and the boys loved it. They helped explain the surgery she was going to have and stepped in when I was going to get emotional. The staff there were incredible. I went back to Aaliyah's room as the surgical team was ready to take her. Daddy was still holding her and we walked Aaliyah to the doors where we were forced to give her to the surgical team. I kissed her forehead and she was handed off. I broke down knowing it was the hardest part because she was out of my hands and in the hands of surgeons. I cried on my husbands shoulder not wanting to let her go. I was scared,worried, and horrified at what could happen in surgery because the unknown is always the worst while being away of watching monitors and numbers.
We walked back to where my family was and I just headed straight for the bathroom where I cried some more. I gathered myself and knew this was the only thing that had to be done if I wanted a healthy daughter. The case manager we had checked in the surgery every hour to every hour and a half and reported back to us. She informed us every time she was doing well and the progress they were making. Her surgery lasted 5.5hrs.
The moment we were waiting for was the sound of the crib rolling by as we all patiently waited. We all stood up and we got to go over to her crib as they brought her back to take a quick peek at her. She was breathing through an amboo bag being pumped by one of the surgical team but she made it. She made it through open heart surgery and tears came flooding down my face. I was beyond relief because we made it through the first milestone of surgery. We were forced to wait til after shift change to go in and see her to give the staff time to put her on the ventilator and get everything set up. This seemed to take forever and I just wanted to see my daughter. 8pm rolled around and I called in to go see her with my husband. She was lifeless and had tubes coming out of every direction but I knew she was okay and these things were necessary for her to heal. Since she was on a vent and paralyzed it was the best night to try and get some sleep in the Ronald Mcdonald house.
January 15th 2011. I slept like a log that night and didnt wake up once. My body needed it for it needed strength. I was anxious when I awoke and showered and headed over to go see her. I headed in for a report and asked how she was doing. They had let me know hat her right lung had gone down and they were trying to drain the fluid off her chest so it would have less pressure on it. I knew this was a little bump in her recovery but got a sense that everything was going to be okay. She remained stable and had many visitors going in and out spending time with her. That night we went to get more sleep knowing we couldn't do much because she was still in a coma-like state and should sleep while we could. I looked at the monitor at her heart rhythm and noticed she was having paced beats. (work on cardiology, I have to know some things) i knew the external pacer was set at 100 , but my daughters rate was 120s/130s. So i asked why it was pacing and they actually couldn't tell me why. They ended up unplugging it while she was doing good and could easily plug it back in if she dipped at all.
January 16th 2011. I woke up and rushed over anxiously wanting to see her again. I tended to get anxious if I were away for too long. The doctors were in with her and he told me her lung was back up and she is doing great. They are going to start winging her off the vent that night and take her off the paralyzing agent. I sat in there with her and watched her little toes move, her fingers move, and she began sucking around the ventilator tube that passed through her mouth. I was beyond happy to see these tiny little movements because she became more life like and back to what she looked like when she was sleeping. today was a good day and I couldn't wait for her to get off the vent the following day. My husband had to leave this day and I was a bit sad. he was going to miss her coming off the vent, but we had no choice. I was alone that night when visitors left and began to feel the emotional impact of this whole thing. i finally got hit with every emotion and grieved in my room that night. A part of me felt sad but a big part of me was so thankful and blessed I couldn't keep my emotions in anymore.
January 17th 2011. Today is the day. The nurses winged her ventilator down to where she breathed the whole night by herself. the vent would only kick in if she didn't breathe.  She did good and the doctor gave the okay to take the vent out. I was so excited because this means I finally get to hold my little girl. I haven't held her since wee hours of Friday morning. They pulled out the vent and she cried. it was a very horsed cry but she cried and I couldn't help but tear up with joy. Seeing my baby girl cry after having heart surgery easily beat the day I gave birth to her. It was the best feeling of joy,relief, and love. I finally got a sense of peace. I wasn't able to hold her until she got her arterial line out later on that afternoon, but the time finally came and I was over joyed. I could hold her forever and ever and never let her go. She has been such a trooper and recovering very well. She was doing so well I got told we would be leaving to the peds floor the following day!
January 18th 2011...The big move off the ICU. Aaliyah was doing great and we finally got moved out of the ICU onto the Peds floor. I felt a little sad because we were getting great care in the ICU and knew it would be a little rougher on the regular floor. I noticed Aaliyah had a bit of a lazy eye and she seemed to be extremely fussy. We had to bottle feed her and she would throw up because she was use to nursing and the nipples of the bottles were making her gag. The nurse read over the signs of withdraw and mentioned she felt that she was withdrawing off the fentynol. I agreed to a few doses of methadone but was Leary at first. i then noticed she seemed to be more comfortable and her pupils of her eyes got better. I remember looking at her eye and watching her pupils go big to small wondering why. it was a sign of withdraw. I felt sorry for her but i could deal with withdraw compared to all the other stuff I had to deal with from days before. the nurse finally said she thought she would do better if I could nurse and i agreed. So we had to weigh her before and after to see how much she was eating. She did great nursing and didn't throw up once! I was so relieved.
January 19th 2011..The big day. The doctor came in and let us know that if her echo was okay we would get to go home. I was shocked it had only been 5 days after major heart surgery and we might be going home. I was so happy and couldn't wait. My poor husband hasn't seen her and I knew he was dying to see her in person. I was sending pictures of her to his phone so he felt a part of her recovery process. They did the echo and the doctor said she was awesome and started the discharge process. He said since she wasn't sick when this all started that her body was able to heal better and she was ahead of the game. He also said it was his fastest discharge and couldn't of asked for a better situation. Aaliyah was given a RSV vaccination and we got our medicine and cleaned our room and off we went! We were going home and my daughter survived open heart surgery and an Alcapa repair! On my way home I pulled over a couple times just to make sure she was doing okay. We live about an hour and 15 mins northwest of Portland and the drive seemed to take forever. I didn't realize how exhausted and worn out I was until I had all that time to think. We got home and awaited the arrival of daddy to get home from work. We had grandma here helping with our two little boys and have never been so happy to be at home. We were finally together as a family again!!! Now the full recovery process.
It's been a week since being discharged and Aaliyah is doing well. She is eating like she has never eating before. She has gained a half pound already and doesn't scream for hours like she did before. We received a brand new baby who calms when being picked up, smiles when making faces, and cries when hungry. She loves her swing now where before she hated it. Everything is going into the right direction and I couldn't feel more blessed then what I do now.

I would like to thank my friends, family, and face-book peeps for helping me get through this.My family helped me at the hospital and at home I love you all! All the prayer chains and support will always be cherished and remembered. I want to give special thank you's to Kari,Sara, and joanne....thank you so much for sharing your stories with me, it inspired me and gave me strength more then youll ever know. i want to thank the friends I called just to simply talk to  just to talk. i want to thank my co-workers for sending prayers and support our way! Thank you to all who said a prayer. I felt a warm support blanket surround me letting me know it was going to be okay. God truly blessed me and my family and I have all of you to thank. I couldn't of done it without you.

Hopefully this will be a closed chapter and we can move on to a healthy beautiful little girl who will grow up and lead a healthy normal life!