Day 3 at Childrens

Tucker had a good day today, the nurses love all the big smiles. He ate his goal of 300 cc/ml of 30 calorie formula during the day and they are going to feed him another 200 cc/ml of formula overnight through the feeding tube. This should start to put weight on him quickly because he will not have to burn the 120-180 calories to suck the nightly formula down. Gary learned how to set up and use the medication pump that we will be using to feed Tucker the nightly formula. The early word is that we will be discharged on Saturday, maybe Friday if everything goes well overnight.

Tucker and his new NG tube.

Spencer had another difficult day at preschool. He has started to be very defiant and disruptive. He is so loud and disruptive that the other children cannot nap. We were told that he was so bad they almost had to call us to go pick him up. We don't know if his actions are because he is feeling neglected or not getting enough attention. We really don't know what else to do.

Thanks again to everyone for keeping us in your thoughts and prayers.

Scary night!

When I took Tucker down to make sure that the NG tube was in the appropriate location in his stomach. I was standing in the hall with him and he started to choke and turned blue. I completely froze! A RN just came and grabbed him from my arms flipped him over and Tucker threw up everywhere. Then he just screamed, I must of looked faint because they asked me if I needed to sit down. Worst night ever, I checked on him every 15 minutes all night long. I am pretty sure that my night RN thinks I am crazy. Our nurse Amy had taken him over to the RN station at one point in the early morning hours and I was a lunatic, I went roaring out there to see if something was wrong. So upset!

Tucker's not eating again.

Yesterday we called Dr. Audrey Marshall, she is covering for Sr. Porras while he is on vacation, Dr. Marshall was the surgeon why did Tuckers cath and placed his stints after birth. She told us that he wasn't eating enough and that we should come back into Children's for the NG tube. So Gary left work and picked Tucker up at Meredith's house, and brought him directly to the 8th floor for admission. We were moved all over the floor before we settled into room 834. This room is right next to two very large ICU mechanical doors, enough noise to just make you insane.

The plan for day one was to just see how much he is taking PO and seethe really needed the tube. Our fantastic NP from the cardiology program AnnMarie stopped by for a visit, she told me that it was crazy for us to waste all this time here, we came in for the tube, so she will talk to a few folks and get it's placement expedited since I just went back to work this week. She is amazing, because it was placed within the hour.

While it was being placed I introduced myself to the other mom Herron the floor with the same last name as us. I told her that I was checking in to see how a member of our family was. We swapped stories and told her to swing by if she wanted to meet Tucker. It was nice to swap stories, her son Hunter, just had the Glenn, which is what Tucker will have next month. I wish that I had someone to talk to that has been through this before. I filled out a patient match card to get in touch with a family that has already gone through this before.
This visit hasn't been without drama! We are in a shared room with a sick little girl from New York who cries ALL DAY LONG! I do not have any Advil either, ugh! It was her older brothers birthday and he was completely ignored by his fighting parents that should be divorced if they fight like that in public. Thank god that I have the amazing husband that I have. Tonight I go to sleep and I am very thankful. Lonely since I have not seen Gary in two days, but I know that our marriage can handle anything.

One fabulous Christmas.

I remember when a great Christmas was defined by getting all of the presents on your wish list. My how times have changed for us. This year we were hoping to just be together and at home this Christmas. Luckily we were home and our holiday was wonderful. It was spent with many friends and wonderful family. We couldnt have been more happy to not have been at the hospital. Spencer even slept in.

Before New Years Tucker had his cardiologist appointment, his weight continues to be an issue. He is only taking enough calories in to maintain his weight, not to gain. They have increased his formula so much that he is sweating while he eats. Dr. Porras said that for an infant to eat (with his diagnosis) it would be the equivilent of an adult to finish a 26 mile marathon. This is why he starts and doesnt finish very often. He tires too quickly. Dr. Porras told us to call next week and give Dr. Marshall an update. (Dr Porras is on vacation)

Sadly....today my maternity leave ended and I returned to work. As much as I liked my time home with Tucker it was emotionally and physically exhausting. It's a lot easier to get up at 4am and drive 75 mins into Boston. I called and spoke with Dr. Marshall this morning, she told us to bring him in and that she would admit him directly to the floor so we didnt have to waste 6+ hours in the ER. Gary took a half day and had an overnight bag packed in his car. (Sadly we have started keeping a bag packed at all times in case of an emergency visit to Children's Hospital) Gary will do the first overnight and then we will switch half way through the day tomorrow. So Gary and I can at least get a few hours in at our jobs.

These next few weeks before his Glenn will not be easy. It certainly feels like more than anyone can handle. Luckily I have a wonderful marriage and an amazing group of friends willing to help at a moments notice. So it will be tough but I know that Gary and I will get through this together as a team.

More to come...