Abby Reese
Born October 10, 2012
5:35pm
6 lbs. 15 ounces
20 inches long
B-E-A-U-T-I-F-U-L
Abby was born after only 6 hours of uneventful labor. She came with a sense of peace around her, looking around just taking in the new world she now belonged to. The next few days were pretty standard filled with cuddling, feeding, and getting to know our new bundle of joy. The night before we went home we sent Abby to the nursery around 12:30 am for the first time. We needed some sleep seeing as how we were going home to her big sister Kate who is a big ball of energy.
Around 3:30am Dr. Caplan, the neonatologist called to let us know that our nurse Mia had noticed Abby turning blue while she was changing her diaper. She didn't feel comfortable keeping her in the nursery so they would be sending her to NICU 2. They said we would be allowed to see her in just a bit, but we couldn't wait. We walked over to NICU 2 and saw that they were wheeling her out. They were taking her to NICU3. The NP came out to let us know that they had heard a new systolic murmur that was not there before therefore they needed to investigate. We were sent back to our room while they tucked her in. We kept calling, and they promised they would update us as soon as possible.
Dr. Caplan came to our room with the cardiologist to speak with us. It is all such a blur, but I remember the cardiologist start to draw a picture of her heart, and I lost it. I knew it wasn’t normal, and I just started sobbing. Matt saw my reaction, and almost passed out. They told me I had two options to go to TCH or Hermann. It was never a question. I just remember thinking, “This is a lot, this is a lot.” I knew everything that was coming. Sometimes naivety is a good thing…which I didn’t have the luxury of having. Matt and I both called our mothers to let them know what was going on. A few hours later we were finally able to see our sweet baby. It’s hard to describe how helpless you feel walking in and seeing your baby hooked up to monitors, lines, tubes. It’s awful…the last time I saw her she was sleeping on my chest, and now she’s hooked up to so much. I just wanted to pick her up and run. The transport team brought her to TCH, and I rode with her in the ambulance. I still don’t know if I was ever discharged.
That day was such a whirlwind. I just remember Abby having test after test, and I still don't know what I was doing that whole day. Matt and I mostly sat and stared at her. My friend Alison came up to be with us as well. My mom flew in later that day, and Matt's parents were with Kate. Dr. Heather Dickerson sat down with us after all the tests were complete to go over Abby's diagnosis as well as treatment plan. Her diagnoses are: heterotaxy with asplenia (no spleen), also called right isomerism, right dominant AV canal, AVSD (atrioventricular septal defect), DORV (double outlet right ventricle), D-TGA (dextra-transposition of great arteries, and infracardiac TAPVR (total anomalous pulomonary venous return.
In order to fix her heart she would first need to repair the veins. At first we thought that would happen immediately or the next day. Luckily for Abby she allowed us the luxury of waiting until she was 5 days old (that next Monday). She would also require the GLENN procedure as well as the FONTAN to help her achieve the single ventricle physiology. The weekend before the surgery was pretty uneventful for lack of a better description. Of course we were devastated, but at least we were allowed that time to just love on our sweet girl. Dr. McKenzie (her surgeon) came in the Friday we arrived to go over the surgery with us as well as the Sunday before to just check on her.
October 15, the day of the surgery was one of the longest days in our lives. Abby’s first surgery was to repair her pulmonary veins. They had thought she might need surgery on that first day (10/12/12). However we were able to hold off until the 15th of October. I remember Dr. McKenzie coming in that Sunday before and telling us that tomorrow was the day. We spent that night holding her, reading to her, and telling her how much we loved her and how strong she was. They were supposed to come around 8, but ended up taking her around 9 am. I remember that day the anesthesiologist, Dr. Moussad came in and the first thing he said was “Have you prayed today?” I told him yes, and he replied, “Good, I have too.” A sense of peace came over me at that very moment. I knew everything was going to be OK. We received updates every hour throughout the day. We had our family bring our other daughter Kate up to the hospital to keep us distracted. During this surgery they had to stop her heart for the majority of the surgery in order to repair the veins. Dr. McKenzie came to give us his update around 3pm, and told us she did wonderfully! Just like the rock star we knew she was. We were able to see her around 4pm that day.
As they were wheeling her to surgery
The next few weeks were spent recovering the the ICU, and then the floor. We titrated her meds to get her blood pressure under control, and spent hours upon hours teaching her how to eat again. This was the hardest part for me I think. All I wanted her to do was eat...and she wasn't having it. It took awhile and a lot of blood, sweat, and tears, but we finally got there. It was is one day she said, "Hey...this is good!" I can not say enough good things about everyone that was involved in her care, as well as my co-workers and friends in the PICU. My friend Alison set up meals for us. Every night we were there one of my co-workers brought us a nice warm meal. It touched us so deeply to see the love and compassion that everyone was showing us. Finally on November 5, we were able to take our sweet baby home and begin our life as a family of four!
It was definitely an adjustment getting used to our new life at home. Kate was so excited to see Miss Abby, and wanted to hold her all the time. Abby certainly loved being at home and was definitely thriving. She was followed by the single ventricle team at TCH. This consisted of cardiology appointments at least once a week as well as monitoring at home. We weighed Abby every morning as well as checked her pulse ox (oxygen levels) multiple times a day. We had very specific instructions on when to call. One of our main goals was to get Abby to gain weight. We would fortify the breastmilk in order to make it 24 calories/ounce instead of the usual 20. She was also receiving meds 6x/day. We would wake her up every 3 hours to eat as well. She was a real sleepyhead so we could not really hold her while we fed her....she just got too comfy and would fall asleep. We had to hold her in her crib and leave her uncovered while we fed. That broke this mommy's heart, but I knew it was what had to be done. Abby was doing great at home, but we started to notice her sats were dropping pretty rapidly. We let Dr. Dickerson know, and we went on in for yet another ECHO on December 7th. The ECHO was pretty much the same so we did another CT angio. It showed that her PA was becoming very narrow therefore restricting blood flow to her lungs. The decision was made that she would need a BT shunt to provide more blood flow to her lungs until she was big enough for her GLENN. Luckily, we were able to go home that Friday before we had to return on Sunday. The next day we took Kate to have a pancake breakfast with Santa! It was nice to have an outing with her before we headed back to the hospital.
We were called in on Sunday, December 9th around 5pm. Needless to say, I was a wreck. I did not want my 2 month old to have to go through ANOTHER surgery...it just wasn't fair. Dr. McKenzie came in later that night to see Abby and go over the surgery with us. After seeing her, he decided that he would probably go ahead and do her GLENN!! We were so excited. That night we just loved on her once again.
The recovery from this surgery was much more difficult. Abby was so uncomfortable. She had a headache from the surgery while her blood flow was learning its new path. She developed a chylous effusion, and had to have another chest tube placed which was also painful. The treatment for this effusion is a non-fat diet for 6 weeks. Let me tell you how well that went over.... Abby was not having it. The formula Enfaport caused her to be so gassy which just added to her discomfort. She absolutely refused to take it...was NOT doing it! We spent a few days on the floor working with her to try to get her to take it to no avail. One morning Dr. McKenzie walked in to check up on her. He asked how we were doing, and I voiced my frustration with the new formula. He looked at her x-ray, and since it looked so good he said to go ahead and put her back on breastmilk! She took it right away! We went for a follow up x-ray the next day which was clear so we were able to go HOME!! We went home the second time on December 20th just in time for Santa to come see us at our house.
Since being home, Abby has done wonderfully! She is like a whole different baby, and just as happy as ever. She is so smiley, so so smiley. She loves being home! We are only on meds 2x/day now, and follow-ups about every month. We no longer have to wake her up to eat, and do not have to fortify the breastmilk. She sleeps for 5-6 hours a night. Abby loves her playmat, watching her sister, and cuddling mommy and daddy! At her last cardiology appointment her ECHO and EKG were "pristine." We were able to take her off one of her blood medicines (propranolol), and wean her lasix down to once a day. Hopefully next time we can come off of it. All in all an A+ for our little rock star!
Thank you everyone for all your support, prayers, and kind words! We appreciate each and every one of them. Please keep them coming!
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