It has been a week of progress at the Baker household.
Jacob had his cardiology visit and an appointment with his pediatrician. Our first task of the day was getting the car loaded and the kids ready to go on time. My husband had to work so my mom said she would go with me. I decided to drop Aidan off with my sister because if Aidan is there I am not able to focus on what the doctor is saying because I am trying to keep Aidan under control. Aidan cried the whole way there. I think he thought I was going to Philadelphia again. This broke my heart and I explained that I was not leaving him but rather going to a local doctor. He was still crying when my mom and I left with Jacob, but stopped soon after I left. He ended up having a GREAT time with his cousins, as I knew he would!
Getting out of the house these days is quite a task. Jake is on oxygen so I have to transfer him to a portable tank. I usually pack his diaper bag the night before. It includes the usual and then all of his meds, syringes, extensions, gauze and anything else I fear we may need. I also have to pack his pulse ox machine in case I need to check his SATs and his formula for while we are out. This is our new normal but still it is exhausting trying to get it all together for a simple outing.
It was great seeing Dr. Heydarian and his staff again so soon after the Glenn. Jake was now 14lbs 3oz! Dr. Heydarian was pleased with how well Jake was doing. He was a bit concerned about the oxygen. Most kids do not need to be on oxygen post-Glenn however as we know Jake has always had trouble with his lungs. So I am just going to try and ween him slowly (More on this later in the post). I told Dr. Heydarian about our decision to postpone the circumcision and skin tag removal until later this year. He is going to contact the surgeon at Cincinnati Children's Hospital to arrange this for us when we are ready. He agreed that Jake should be off of the oxygen and a little more stable first. We went over his medications and he mentioned we may be able to start weening him off of the Diurill in a few weeks. This would be great since he is now on 8 different medications!
Jacob was weighed again on their scale and was 14lbs 4oz. Every scale is different but these were only off by an ounce. I was very excited to hear that Jake is in the 50th percentile of the growth chart for his weight and the 25th percentile for his height. This is such an amazing accomplishment. Most hypoplast kids are not even on the growth chart. They generally are very small. Jake is not only on it but he is right where a healthy baby should be. I was very excited about this news!
As if he has not been through enough in the last few weeks I knew that he had to have his 4 month shots. It is not good to get behind and he was already behind by a few weeks. So he got the stitch removed from his chest tube site and then he got his 4 month vaccinations. He did very well. He cried when he first got the shots but after I picked him up he was fine.
I also discussed with the doctor about him being irregular and having lots of gas. They agreed with what CHOP had told me about putting Mirilax in his overnight feed. So far it has worked! Almost to well lol. I don't think I will use it everyday but its better than having to give him suppositories.
Dr. Harris said that Jake looked the best he has ever seen him look. He and Dr. Heydarian both commented that his breathing looked better. After making sure we said goodbye to the staff we headed home.
As soon as we got there Apria came to deliver more oxygen tanks. I also had them deliver a back up tank in case we have an emergency such as the other night when the power went out. This is one giant oxygen tank that works like the portable tanks. It does not need power. It will be nice to know that if its storming out, my son is not hooked to an electrical outlet. So relieved.
This is a picture of Jake hooked to all of his machines. The concentrator and the pulse ox machine. He is hooked to these all day and night and then at night he is also hooked to his feeding pump. It is not so easy to move him from room to room. Can't wait until he is wireless again!
FAST FORWARD TO TODAY...
It was a busy day at the Baker's today.
Jake has been doing really well taking food by bottle but today he really gave me a run for my money. Jake downed a 80ml bottle in about 15 minutes. He drank it straight down like it was nothing. For those of you who are not familiar with his history... Pre-Glenn Jake was lucky to take 10 or 15mls by mouth. He would get so tired. So 80 is HUGE for him.
The shunt being removed is a huge help. Plus everyone says these kids are so much better after the Glenn. Most feeds Jake will drink about 35 to 40mls. At least once a day he gets ambicous and takes 60mls. Today he really was up for the challenge. That feed I did not have to use his g-tube at all!!!! The next feed he took about 40 by mouth and his last feed before the overnight went up he took 50ml. Overall a great day bottle feeding. Go Jake Go!
Jake also had a day of progress with his oxygen today. Earlier today I noticed that he was SATing in the high 80s with his oxygen so I decided to do a little experiment. Normall if Jakes Oxygen canula falls out then he immediatly desats to the 60s. I decided to take it off for a bit to see how he did today. I kept him hooked up to the pulse ox the ENTIRE time so I could make sure he did not deSAT.
I figured he would make it maybe 10minutes and I would have to put it back on. He made it an hour! He stayed around 80. Sometimes higher. The lowest he would hit was 74 which is not bad.
I think he would have made it longer but it was time to eat. Eating for a heart kid is hard work. Especially for one who is just now beginning to use bottles. So as soon as he started eating by bottle he plummited down to the 60s. So back on it went. I tried to take it off again right after he was done eating but he still dropped down. About an hour later I took it off and he was great for about another hour! I decided to put it back on while he slept just in case.
Jake hates the nasal canula and tries to yank it off every chance he gets. So I have decided to give him "Oxygen Free" times through out the day as long as he tolerates it. For now i will keep it on while he eats and sleeps. I think this is a great way to get his lungs trained on having regular room air. Maybe it will help the process. Regardless it made me feel better about him being able to get off of it at some point.
HOORAY FOR AIDAN!
I can't end the blog without also giving kudos to my other son Aidan. He finally started showing interest in the potty today (This has been a struggle). Today he pooped in the potty! I know it sound silly to celebrate but to us it is a major accomplishment and I am very proud of him.
I am so proud of both of my boys!
♥♥♥♥♥ SPECIAL PRAYER REQUEST ♥♥♥♥♥
Baby Zoe is scheduled to have her Glenn on September 14th. I have become very good friends with Zoe's mom Stacey. We met prior to having our babies and then in Philadelphia at CHOP. Her daughter Zoe has HLHS like Jake and also like Jake she has not had the easiest time. I am so happy they will be going to Philadelphia soon for her second stage. Please pray for her family over the next few weeks and pray that Zoe's surgery goes smoothly and they are back home very quickly.
Click here to read Zoe's story
Click here to read Zoe's story
I also would like to give a big Thank You to Kelly Smith for this beautiful collage she made about Jacob. She is in a scrap booking class and the project this week was to make a collage using lace and hearts. Very beautiful Kelly, Thank You!