Matters of Abby's Heart:: Recovery Days 2-4

Tuesday::

Tuesday morning started pretty early with labs, x-rays & rounds. Abby was still pretty sleepy and didn't want to eat anything other than milk. After rounds she got to have her pacemaker lines removed, her picc line came out, one of her hand iv's came out along with her catheter . I think she was feeling more comfortable with all that off/out of her. Late morning she said she wanted to eat so we got a variety from the room service menu. All she would eat was the diced peaches but anything is better than nothing at this point. She she was eating now they decided to send her to her room on the cardio floor. We waited and waited and waited for the orders to get processed and in the meantime Carol came and brought us lunch and my Dad came and brought Abby more soy milk (she did't like the hospitals soy milk). Abby seemed excited to see the both of them! One fun fact while we waited was we asked our nurse to look up Abby's blood type-she's O+. So thats about the only thing she got from me but hey I'll take it! We finally got to move to her new room early afternoon! The room was way smaller but we had our own bathroom & fridge! As soon as the nurses got Abby settled and had walked out of the room she started to throw-up and man did she throw-up. I ran out and got help and everyone was so great helping her get all cleaned up. I think that was just what she need to do to get the rest of the anesthesia out of her system because after that she took nice snoozer and woke up seemed to be much more like herself! Luckily Uncle Matt was on his way down to visit his god-daughter and stopped by mom & dads for new lovies as all Abby's were now needing a good long hot wash. As soon as Matt walked in Abby gave him a little smile! I had not seen her smile since before surgery so it was a great sight! After he left she even gave me a little selfie smile! The boys wanted to FaceTime with her before dinner so we had a little FaceTime chat and Ben was beyond happy to see that Abby was ok. After we chatted with the boys she got to have a popsicle which made her very happy and we got lots of smiles while she ate it and we blew lots of bubbles for her to look at! After her treat she was tired and took a little snoozer-when she woke up she sat up in her bed which shocked the heck out of me as she had yet to do that. At that point I knew she was starting to really feel better! About an hour later she was in my lap and started to crawl out of it so I let her stand in-between my legs for a few minutes. Then she wanted to start walking! So Vince grabbed her hand and off she went-a little wobbly but still she made it over to grab a toy! Vince & I just couldn't believe it! Then we ordered her some dinner and she ate a decent amount of fruit & yogurt! Then we hung out and watched more Bubble Guppies until she was ready for bed.

Wednesday::

Abby slept pretty good minus the few interruptions from the nurses checking on her and giving her her meds. She was up about 6am to go down to radiology for some x-rays and then she wanted to crawl into bed with me and snuggle for another hour. It was the best feeling! Then it was time for labs which didn't go so well. The poor girl already had some many poke holes and blown veins. It broke my heart but the nurses finally got what they needed and were out the door. It was just after 7am and I was missing the boys so I told Vince I was going to go surprise them and take a shower and I'd be back. I stopped off at Lamars to grab some donuts and when I got home they were both still asleep. After about 15 minutes Will woke up and I ran into his room-he gave me the biggest smile and longest hug and we snuggled for a bit before coming down for donuts! Shortly after Ben woke up and was so happy too! We had a great little donut party and then I took them to "summer school" at Nativity. I ran back home grabbed a quick shower, packed some fresh clothes, hit Starbucks for Vince & I and was back shortly after 10am. Abby was in the playroom when I get back-coloring and playing with stickers with some of the volunteers! We went back to her room and had another little donut party with her! Then GG came by to bring food and see her Abby Doodle! Abby was all smiles! She had lunch then took a decent snoozer. Vince went for a much needed run and I tried to just get caught up on responding to texts, call, emails, ect. Then our neighbor Kristie brought us Spin for dinner and gave Abby cards her boys had made for her! We are so lucky to have such great neighbors! Abby wanted nothing to do with her hospital dinner but ate 2 pieces of pizza! After we finished up dinner Uncle Potty & Aunt Leah stopped by to visit! She had the best time showing off all her toys she swiped from the playroom! Then she got the best surprise...Ben & Will came up to visit with Grandma & Papa Jimmy! The 3 of them were so excited to see each other! Ben couldn't stop hugging her and Will couldn't stop talking to her! Abby wanted to go show the boys all the fun stuff to play with in her pod and there was a tricycle out there and she started to climb right on! Still looked up to her iv pole but she didn't care! Vince pushed her along and Papa Jimmy followed with her iv pole! She was so happy! She didn't want to ever get off it! But we finally did and her and Will had come quality twin time on the couch watching Bubble Guppies for a bit before it was time for bed for all the kids.

 Thursday::

Wednesday night went about as well as Tuesday night. And the morning was the same x-rays & blood work. During rounds all the doctors were very pleased with her recovery and made a few goals for the next few days...to get her drainage tube out, get her pain controlled with oral meds, drinking lots of fluids and a good echo. And hopefully home by Sunday or Monday! Abby was struggling with her fluid intake so we were really pushing any fluids we could in her. Late morning her team decided to take her IV fluids bag off and see how she would do. She was so happy to be free from that pole! It made it hard for her to cruise the halls in her Cozy Coupe! A volunteer came by and asked if Abby would like to come down to one of the chapels because the cast of Beauty & The Beast was in town preforming at Star Light and were stopping by for a visit. We thought Abby would love to get a change of scenery so we took her down. We were surprised to see all the news crews there! Abby enjoyed the song they preformed and got a few autographs before we took her out on the adjoining terrace for some fresh air since it had been since Monday morning since she had been outside. She loved being outside in the sunshine! We had to drag her back in to eat lunch! GG & Bapa brought us lunch and we played for a bit before nap time. Vince went out for a run and then I went and walked over to Crown Center just to get out of the hospital. About that time I got a text from Vince that Abby was on tv! She was on the news! So another first to cross off the list for Abby! Then Grandpa & Grandma Marq came by for a visit and to bring us dinner! She had a great time showing them even more toys she's swiped from the playroom! After a quick little sponge bath and hair washing in the sink it was time for more Bubble Guppies and then bed.

Friday::

Thursday night was the worst night we had besides Monday night. Her nurse came in to give her meds and her iv line had gone bad. The nurse was hopeful she'd be getting rid of it in the morning so she didn't want to out a new one in but the doctors disagreed and after about an hour of back & forth the decision was made to place a new one. So we waited another hour (midnight-ish) for the team to come place it. It was awful. Poor girl is so brave though. After it was done and we got her calmed back down and asleep it was after 1am. And a little before 6am they were there to take her for her daily x-ray. Then came the lab nurses but since she had the new iv it was pretty easy. During rounds they decided it was time to take out her drainage bag and they said if her echo goes well we could TAKE HER HOME TODAY since we lived so close to the hospital. I about fell over! So the team came to pull the drain which wasn't as bad as I had thought it would be. And shortly after she was getting her echo which looked good. The pulmonary valve was acting up a bit but they said it was from the surgery, swelling of the heart and the healing process. They cleared her to go HOME! We of course had to wait a few hours before the orders went through and the paperwork was ready. This of course lingered on into nap time and Abby was less than thrilled. It soon became clear we needed to lay her down for a nap or get outta there fast so she could go home and sleep. Luckily the nurse worked her magic and got us out the door! Abby fell asleep before he even pulled out of the hospitals circle drive! Vince & I were both still in shock they let us leave so fast! When we got home we put her right back to bed and Will was still sleeping. Ben was so excited to have us all back home! Our neighbor Kim dropped off pizza for us and her & Kristie took the boys over to have backyard picnic with their crew. After the 3 of us ate Abby wanted to go outside so we ventured over next door and the kids were all so excited to see her! She was even trying to climb up the play set to slide! Bed time was quickly approaching so I went and put Abby & Will down. I was so an amazing feeling to have all 5 of us back under the same roof! Abby slept all night-I woke her up once for medicine but she went right back down! She was so happy to be back in her own bed!

Matters of Abby's Heart:: Surgery Day

Surgery Day was finally upon us...

We got Abby up at 7am so we could give her the breakfast her surgery team said was ok to have up until 7:30a.m-any clear liquids. Abby was a little confused that we gave her jello, a popsicle and apple juice for breakfast but after a few minutes she dug right in. We were so glad she could have a little something in her tummy! We headed to Children's Mercy about 8:45am. We got all checked in and waited in her pre-op room. Unfortunately the surgery ahead of Abby's was taking longer than expected. Abby was a trooper and waited patiently but started asking for snacks after awhile-it was awful telling her no.

Right before noon they came in and gave her some medicine to make her feel a little loopy in the hopes that she would be ok when we handed her over to the nurses. And thankfully it worked-she didn't cry at all when we handed her off. Our nurse practitioner Stacy told us that since Abby's surgery wasn't a routine (tubes, tonsils out, etc) surgery that we could wait in the Ronald McDonald waiting room not the general waiting room. I was so relieved-the other waiting room was huge, crowded, loud and full of kids running around. The Ronald McDonald room is small, quiet, has a fully stocked kitchen, a living room, patio and a private quiet waiting room. There was a few other families in there but it was nice & quiet. Luckily they bent the rules and allowed the 6 grandparents to join us. Right after we handed her off Vince went to go up to the other waiting room to get the grandparents. A few minutes after he left our nurse practitioner for surgery Dolores, came in and handed me Abby's binky, lovey and headband-that's when it really hit me. My baby was really going to have open heart surgery. We got our first update at 12:45pm-all her lines had been set and they were ready to start the surgery. Our next update around 1:15pm-they had opened her up, her vitals looked good and they were starting bypass. Our last and best update came shortly before 2pm-the repair was done, she was off bypass, her little heart started right back up and the pulmonary valve didn't need any repair! Dolores said it would be a few hours before we could see her but we needed to move to the PICU waiting room where Dr. P would be out to talk to us soon. We were all in shock the surgery only took 2 1/2 hours! About 3:30 Dr P came out to talk to us. He said everything went great! He made the patch for the hole from her heart sack. He said he didn't want to even touch the valve because it didn't seem "worth it" to mess with it. He went on to say that she did not need any donor blood during surgery like we initially thought she would but her numbers were pretty low and she may need to be given some blood in the next 24-48 hours. Other than that everything looked good. Dolores came out shortly after we saw Dr P and said Abby had been moved to her PICU room. She said to ask the front desk in 20 minutes if we can see her. Before she left I asked her if her surgery was best case scenario and she said "No it was better than best case"! I think that was when I really took my first deep breathe in weeks. We were now on the other side of this and just needed to help our sweet girl with her recovery.

We got to go back around 4pm to see Abby-we had been warned she was still on the ventilator. My parents and Vince's dad & stepmom decided they would rather see her without all the wires, tubes & ventilator. And I agreed that it would be very hard on them to see her like that. Vince's mom & Jimmy wanted to see her though so we all went back. I will say as awful as it was to see her all hooked up to so many machines, with so many tubes still in her it wasn't as bad as I had thought it would be. But goodness she looked so tiny & helpless laying there asleep in that bed. The nurses explained to us that before the team could take the vent out she had to "prove" to them she was ready. That means fight against the tube and take breathes on her own. They warned us that it would not to an easy thing to watch. And boy they weren't wrong. About 5pm she started to wake up and fight the vent but after a few minutes she gave up and went back to sleep. The nurses said that that was totally normal and that she'd do that a few more times before she was really ready. We decided to go back to the Ronald McDonald waiting room where volunteers had made dinner for Children's Mercy families. We were gone about 20 minutes-we felt awful leaving her but also knew it was going to be a long night and food isn't allowed in the PICU. When we came back she was still snoozing away. About 6pm she started to wake up, cry and fight the ventilator. It was literally the worst thing I've ever seen one of my kids go through. There was nothing we could do but stand back out of the way and watch and pray it would be over soon. After a few minutes I just couldn't take it anymore and turned around into Vince and stayed that way until it was over. Thankfully after about 15 minutes it was over and Abby was off the ventilator and doing good. She went back to sleep for a little while after all the commotion ended. She was very happy to be able to have her binky back! I finally got to hold her around 9:30pm. It felt just as good as it did the first time I got to hold her in the NICU. About 10pm Abby started asking for milk. Luckily I had brought some of her soy milk with us to the hospital but the doctor said she couldn't have anything to drink until midnight and it would have to be water then and maybe she could have milk around 1 or 2am. Poor Abby just cried on and off for her "milky". Finally around 11:30pm they caved and let her have one ounce of milk. She chugged it right down and then screamed for more. But they said she had to wait 30 minutes to make sure it stayed down. That was a long 30 minutes. But then she had 2 ounces of milk and let her have some ice too. For those that don't know Abby LOVES ice. Her & Will both would eat it all day if they could.  So the ice made her very happy. It was a long night with little sleep and lots of Bubble Guppy watching but we all managed to get about 3-4 hours broken up with alarms, vital checks and labs.