So as all of you know Jake has always had tummy troubles. He screams during feeds at times and its just been a constant struggle even with the Nissen. On Friday he was very fussy. I even called his cardiologist here in Philly to see if I should bring him in. I monitored his SATs closely and they were perfect 80 to 85. No fever or any other symptoms. We decided that it was most likely tummy issues combined with being out of his element and having so many appointments this week. The teething did not help much either. We even tried to take a walk down to the peir thinking this would relax Jake but unfortunatly he was not having it so it was a very short trip.
That night we started the second dose of Prevacid. I decided to start the Bethanicol in the morning so I could watch for any side effects. Since increasing the prevacid and adding the new medication Jake has been a different child. He still has some crying episodes where I can tell his belly is bothering him but it has gotten 80% better. This morning he woke up so happy and smiled and played for hours. He is still teething and chewing on everything so I am giving him tylenol as needed but overall he is so happy and content. I can't express how relieved I am to see him this way.
Jake continues to amaze me daily with how much he is changing and learning. His grasp has gotten so strong since we have been here. He is now bringing his arms together all of the time now instead of throwing them out to the side of his body. I made up a little song to teach him and he watches me do it and mimics me. It is so amazing to see him learn something new. He is also grabbing his feet and holding them up on his own. He has long converstaions with his toys on his play mat and is learning to hold his rattles and toys on his own. The next trick we are trying is putting his binki back in on his own hehe. He is just so alert and you can see him learning right in front of your eyes. Truley amazing.
He has also started covering his face when he wants to sleep. He sleeps with his arm over his eyes. Its so cute.
ALL TOGETHER AGAIN!
My parents, my husband and my 3 year old Aidan came on Saturday! I can't tell you how nice it was to hold Aidan in my arms again. It is so hard being separated from him. He was so happy to see me and couldn't stop smiling.. this melted my heart beyond belief.
The first night they were in we had a special treat. We could see a beautiful display of fireworks from outside of our hotel window. It was right next to the Ben Franklin bridge and we all just sat on the bed and enjoyed the beauty...
On Sunday we decided to give Aidan a day just for him since pretty soon we will be separated from him. Andy and I are staying here with Jake and my parents will be taking Aidan home with them on next Saturday. Mimi and Grandma offered to watch Jake so that we could take Aidan to the Aquarium. We had such an great time.
Our adventure began by taking a ferry ride from Philadelphia, PA to Camden, NJ. It dropped us off right at the aquarium which was great because I did not have to worry about driving there. The Ferry picked us up at the pier right across from our hotel. This was Aidan's first boat ride so he was super excited!
Once getting through the insane line at the aquarium we were off on our new aquatic adventure. It was shark week so there was a really neat scavenger hunt that Aidan really enjoyed. We got clues which took us to all of the exhibits.
Aidan got to get his face painted and he decided to be a shark! She did a great job!
We took him to the Dora and Diego 4d adventure that they had playing at the aquarium. Aidan said he really wanted to do this so we thought it would be a fun treat. Boy were we wrong lol. Aidan was terrified. He was clingy at first but seemed ok. Then the air would come from the seat in front and some spritz of water. He did not like that at all. He was afraid of a robot butterfly that was part of the movie. I told him it was ok and it could not hurt him. The 3d effects were just to much for him. he kept saying that he did not want them to come out of the movie.
Then the butterfly looked like it was flying out of the screen and coming right at us. Aidan yelled louder than I have ever heard him yell before. He jumped, screamed and threw himself into me. The whole audience started laughing. Ok I know this may be mean but I could not help but laugh it was really funny. It was a pink butterfly but to a 3 year old I can see how it would be scary seeing something fly out of the movie at you. So we got up and left 5 min into the show. I think we will wait a while before trying something like that again.
By this point Aidan was getting tired and after the attack of the pink butterfly robot he had enough. He kept saying he wanted to go home. So we quickly ran through the shark tanks and they had a big area with Hippo's. Then we caught the ferry back to the hotel.
Overall.. minus the butterfly scare... we had an amazing day! Aidan had so much fun and it was great getting some one on one time with him. He is so used to having to share his time and is so good about the hospital stays and attention Jake gets. I wanted him to have a day just for him.
THE WEEK AHEAD...
Please continue to keep Jacob in your prayers. He is going to have a very difficult week.
We will find out what time to be at the hospital for his cath. I am also praying we get into the Ronald McDonald House. We have been having to stay at the Comfort Inn because we were not able to get a room there yet.
THANK YOU TO THE MOUNTAIN MISSION OF CHARLESTON, WV. They donated 4 nights at this hotel. Without them this would not have been possible. They are an amazing cause and I hope to pay it forward one day once things settle down.
Jake will be admitted and have to go under anethisia and back on the vent during this procedure. There are risks so please pray all goes well.
This is the big day. Jake will have his bi-directional Glenn surgery.
During this surgery the BT Shunt is removed and the blue blood from the head, neck and upper body is directed to the right lung artery through the superior vena cava. This allows the blood to flow into the lungs for oxygen. The temporary shunt from the Stage I operation is removed. The Stage II procedure reduces the work load of the heart.
I am praying this recovery will be much easier on Jake since he is so much stronger now. Our prayers are being heard so please take a moment to think of my sweet baby boy on this day. Pray for the doctors and pray Jake comes off the vent quickly and has a smooth recovery.
Thank you all for your continued prayers and support for our family.