Our Baby Is Home!!!

First, we would just like to start by saying thank you SO SO SO much for all of your thoughts and prayers!!! Our prayers were answered and our sweet baby girl is home! Everyone has been so supportive and encouraging. We GREATLY appreciate it and cannot thank you enough!!!

Less than two weeks, our baby had open heart surgery. This was, by far, the toughest thing we have ever gone through. We had been dreading this day since Abigail was first born and we learned of her condition. It was something that constantly lingered in the back of our minds, wondering when the day would come and what it would be like.

Once we got the surgery date, our minds were consumed with it. Everything became "In 3 weeks...in 2 weeks...in 1 week..." We also kept saying, I wonder what things will be like 1 day...2 days...3 days after. Now that we are on the other side, we can't help but think "Last week at this time..."  It is incredible to see how far we have come.

On Tuesday, April 22nd, we woke Abigail up at 5:30am and put her in the car to head to the hospital. She normally gets up at 8:00am, so this was quite early for her. She never went back to sleep, she just sat in her carseat staring at me and looking around. Abigail was very calm, making me wonder if she felt our nervous energy.

When we got to the hospital, you sign in and they give you a beeper (like they do at a restaurant) that will sound when it is time for you to go on back. Unlike at a restaurant, this was one beeper that we did not want to go off. Once they call you back, everything goes very quickly. They took her vitals and then we had to wash her with these special wash cloths for the second time. The doctors compared these wash cloths to saran wrap, explaining that the medicine in these cloths help to protect her and keep good bacteria in and bad bacteria off.

After that, we met with the anesthesiologist. My mom's friend knows the anesthesiologist, so he had been expecting us and gave us extra special attention to try and put our minds at ease. Of course, we were still a wreck, but it was nice to have someone familiar. A few minutes later, it was time to go. I was allowed to walk Abigail back to the operating room. I can't even write this without crying. I knew this part would be hard. We walked in to the operating room. They are so specific about where you can walk so that you do not contaminate anything. They asked me to lay her down on the table and, at this point, the two of us were hysterical. Abigail was reaching out for me, crying and I could not do anything. I felt so helpless. There were so many people holding her down. They placed an oxygen mask on her that had anesthesia in it. As soon as she fell asleep, I had two seconds to kiss her. I just lost it. I begged everyone to take good care of her and I gave her one more kiss and walked away. Just the feeling of giving your child away and placing their life in the hands of the doctors and nurses, and ultimately God...there are just no words to describe it. Now all we could do was wait.

Surgery began at 7:04am. One of the nurses in the operating room calls you with updates (when the surgery begins, when Abigail is on the bypass machine, when she is off and when the surgery is complete). Waiting for a phone call is just agony. Colin and I called our phones a ton of times, just to make sure our phones were working and we had reception. There is really nothing that can take your mind off of what is taking place. Colin and I spent most of the surgery praying and looking at Abigail's blog book.

We received a call shortly after 11:00am saying that the surgery was finished and that Abigail was headed up to the Pediatric Intensive Care Unit. The surgery was a little over 4 hours. We met with the surgeon around 11:45am. Dr. Shen (the surgeon) told us that the surgery went well. They were able to successfully put a patch over the hole between the atrial chambers of her heart and sew up part of the tear in her Mitral Valve. When they tried to close the tear up all the way, the valve became blocked so they had to let out a few stitches. The echocardiogram immediately following surgery also showed that Abigail has a small VSD (another hole). This hole would not have been able to be fixed during surgery because of where the hole is located. In order to fix this hole, the doctors would have had to remove her valves, thus complicating and lengthening the surgery beyond what is safe for one surgery. The doctors seem confident that Abigail will be able to live with both of these defects without any additional surgeries, but they will be keeping a very close eye on them. While this situation is not ideal, Colin and I are so happy that Abigail is okay and that the surgery was successful for the most part.

About an hour and a half after the surgery was finished, Colin and I were allowed to see our baby. We cannot describe the feeling we had when the doctor came and got us. We were practically running to see her. The doctor explained how Abigail was doing and what exactly we were going to see when we saw her for the first time. I don't think anything can prepare you to see your child like that. The doctors had just taken out Abigail's breathing tube a few minutes before they got us. That was a great sign! Normally they leave the breathing tube in for at least 24 hours, but Abigail was doing so well they decided to take it out.

As soon as we got close to the room, Abigail heard our voices and opened her eyes. Awww...our sweet baby. She started crying, very soft cries...we could tell she was in pain:( She was reaching out towards us. We just held her hand and stroked her hair. They were giving her Morphine every hour for the pain. Even with all of the medication she was so alert! Every time anyone "new" (doctors or nurses) came near her, she would open her eyes and cry and reach out for our hands. Abigail even signed pacifier and milk almost immediately. The doctors were so impressed with how alert she was.

It was so hard to see our precious, little one like this. She is one strong girl!

Abigail had wires and tubes all over her body. She had an Arterial Line, Central Line, IV in her leg, tubes out of her chest/stomach, a pace maker, oxygen, Heart Rate Monitor, Pulse Ox, something measuring her brain oxygen, something measuring her kidney function, more oxygen measurements on her thumb....there was very little on her body that was not covered. 

The first day and night, Abigail was in the Cardiac Corner of the Pediatric Intensive Care Unit. This is where all children go after having had open heart surgery. Abigail was assigned one nurse who's only job was to watch over Abigail. Abigail slept for most of the day. Colin and I stayed at her bedside. Nana, G-dad, Meme and Granddad were able to visit with Abigail for a little bit. There was not a place for Colin or I to sleep, so one of us stayed awake at Abigail's bedside, while the other took a nap in the chair. With all of the doctors visits and tests being done, we weren't really able to sleep anyways. Maybe an hour that night???

 Abigail had a great first night. Early in the morning, they allowed Abigail some water. She was SO thirsty! Abigail was gulping down the water. They had just removed her oxygen, but had to put it back on because she wasn't breathing when she was drinking so her oxygen levels were dropping too much. You know when you are so thirsty and you drink so fast, you end up gasping for air...yes, that was Abigail! Later in the morning, they were finally able to remove the oxygen, as well as her Arterial Line and the machines measuring her brain oxygen and kidney function. With those removed, we were able to hold her!!!!

Just 25 hours after surgery, we were holding our precious baby. Ahhhhhh.....seriously....nothing better!!! I don't think Abigail was put down for more than a minute the rest of the entire hospital stay (except when she was playing several days later) after we were first allowed to hold her! About an hour after we were able to hold her, we were transferred to the Pediatric Cardiac Care Unit. We finally had doors on our room!!! Yay!!! (It was SO loud in the PICU! )The first day after surgery, we really just cuddled with her and watched movies. The doctors were SO impressed with how well she was doing.

Just the best feeling holding our little girl again!!!

      Some Daddy lovin' will always make you feel better! Look how long she looks in Colin's arms!!!

Abigail was finally able to eat!!! She wanted ice cream. Go figure:-)

Sweet girl:)

A little foot massage while we watched The Lion King

The following day (Thursday), Abigail started to show signs of being sick and she started coughing a bit. Coughing is not totally out of the ordinary after open heart surgery. Some babies have fluid in their lungs, but once they get up and moving, it goes away. So that was the goal. Get up and moving! We met with the Physical Therapist that day to help us get Abigail up and figure out how to lift her and walk with her. Abigail really wasn't in the mood to move around a whole lot. She just wanted to be held. That didn't seem too out of the ordinary for her. I mean...she just had heart surgery, so we could see why she wasn't in the mood.

The doctors forced us to get her out of bed. She felt as miserable as she looked:(

Abigail held our hands A LOT at the hospital. Whenever she was scared, upset or just wanting extra loving, she would reach out and grab our hand. Awwww

Love reading with Nana!

Then the fever started coming. Again, a fever is not totally out of the ordinary after open heart surgery, but a fever after 48 hours gives the doctors reason for concern. Her fever wasn't going up too high, so they were just going to keep monitoring her. Abigail started to become really pale also. They did a blood test and saw that she was anemic. If her levels went down any lower, they were going to need to do a blood transfusion. Blood transfusions can be risky and cause infections and other complications. We were all hoping to avoid that if possible.

Other than the fever and anemia, the doctors were impressed with how quickly Abigail was recovering. There was even talk of us going home the following day.

Abigail LOVES dogs. This is one of her favorite books. She loves to point to the doggie and kitty:)

She is just the best!!!

Auntie Anna sent Abigail the cutest medical bubble kit. Abigail was OBSESSED with it! Daddy is the BEST bubble blower:-)

These bubbles were just the best distraction during many of Abigail's procedures. Great idea, Auntie Anna!!!

I was laying down and Abigail just climbed right on! Silly girl!

Awwwwww

                                                     Singing songs and being silly with Daddy:)

Love this picture!!!! She is a hoot!!!

 When we woke up on Friday, Abigail's fever was just getting worse. The doctors started to become very concerned and Colin and I were a mess. We didn't know what was going on. She was regressing so fast. They ran blood cultures to see if there was an infection in her blood, but those take 24 hours to get back. Abigail did not really eat or drink that day. We kept trying to get her up, but she was having a hard time. Finally, some doctors were able to get her up walking, but she still seemed to be regressing.

Just relaxing as a family and watching a Disney movie:)

 Later that evening, Colin started to feel cold. That is VERY unlike Colin. He hadn't been feeling that great for two days, but we attributed it to the stress and lack of sleep. The nurse took his temperature and found that he had a fever. Colin immediately left and went to Urgent Care. Luckily my mom was there and was able to stay the night with us. They did a flu test on Colin and he tested positive, so they did a flu test on Abigail and she tested positive too. They immediately put all three of us on Tamiflu. I was just taking it as a precaution. It seemed like a good thing that we had an answer as to why Abigail was sick, but doctors then became super concerned that her cough was going to go into her lungs and that she would develop pneumonia. We were all very nervous.

Soooo thankful to Nana for staying with us after Daddy left!!!

 That night, Abigail started going downhill. Her fever was spiking and she started throwing up. She was becoming dehydrated and needed fluids. And because she couldn't keep her medications down, we couldn't get her fever to come down. She needed her meds fast. Around midnight, doctors decided they needed to put an IV in. Abigail's last IV had just been taken out that morning!  Because Abigail was dehydrated, they had a hard time getting an IV in. Your veins are likely to collapse when you are dehydrated. It took over 3 hours to get an IV in (with Abigail awake, in pain and the two of us crying hysterically). They ended up bringing up an ER tech that specializes in pediatric care. He was 6'5", very large....just seemed interesting that this large man was going to put an IV in our tiny daughter, but for some reason, I just felt this peace come over me. I knew he was going to get the IV in. And he did. Thank God!

Once Abigail was able to get her medication and fluids, she started getting better. The next day, she was like a new child. Abigail was up, playing around the room. (P.S. we were completely quarantined in the room. Every time a doctor or nurse came in the room, they put on a gown, gloves, mask.....we were not allowed to even poke our head out of the room. It was like we were in the movie Contagion!!!) So of course, now all Abigail wanted to do was to go walking around in the halls! Sorry sweet girl!

The rest of Saturday went great. Abigail's fever stayed pretty low and her blood cultures came back clean. Abigail was up moving, eating and drinking. She had a small fever Saturday night, but all and all she was doing great. On Sunday morning, the doctors told us we were clear to go home!!! Yay!!! It was just the best news!

Here is the rambunctious Abigail we know and love!!!

                                                                  Our silly girl is back!!!!!!
Colin came to pick us up on Sunday (wearing a mask:)). It was just SOOO great to see him! We missed Daddy like crazy! Abigail started to fall asleep on the ride home, so we thought we would just put her down for a nap when we got home. As SOON as we parked and got Abigail out of the car, she was headed over to get her two favorite rocks and to hit the swing. Within 30 minutes of coming home, Abigail had gone on the swing twice and vacuumed twice. Our little girl was back!!!

We missed Daddy!!!

Since coming home, Abigail is doing great! She is becoming more and more like adorable, silly self every day. Abigail was having really bad nightmares, but those seem to be happening less and less. She was waking up in a panic, gasping for breath and clinging on to us. We, of course, will never know the cause of the nightmares, but we are guessing that it has something to do with when she was being put to sleep. It was so traumatic, but hopefully those memories will soon be forgotten. 

It is just so hard to believe that she had open heart surgery less than two weeks ago. We have a few restrictions. Here are some of them: no picking her up under her arms (we have to scoop her up), no movements that place her arms behind her and stress on her sternum, no taking her out for 3 weeks/limited contact and no saturation of her incision. Not too bad after undergoing open heart surgery! We are just so blessed to have the medical care that we have had AND the love and support of such wonderful family and friends. Thank you again from the bottom of our hearts!

Abigail, your mommy and daddy are SOOO proud of you!!! You are such a strong and determined little girl. You have been through so much. We cannot tell you how happy we are to have you home again. We love you more than you will ever know!!! xoxo