DAY SIXTEEN

Friday, Feb 1, 2013:

Today we got to bring our sweet baby William home!!!!! He came home on the feeding tube, 1/2 

L of oxygen, and a telometry montitor. The telometry monitor are those three (can only see two) big stickets on his chest connected to the wires. This monitor recorded his heart rate and sinus rythmn. The monitor would talk to a cell phone that we kept close to William and that cell phone would send the live data to a hospital in Sandy. So William was being monitored by a hospital 24/7. We knew that William at some point would need a pace maker - it is very common with his defect to need one and with his heart rate dropping days before they wanted to monitor it over the next month to decide when.

DAY FIFTEEN

Thursday, Jan 31, 2013:

Today was busy as I learned how to give him his medicine, what to do and not to do with his incision, about his monitors and oxygen, as well as continuing to reteach him how to nurse. In order to take William home he needed to eat and nursing wasn't working and he wouldn't touch a bottle so they taught me how to feed through a tube. I had to learn to place the tube through his nose and then to feed him through it. It was about a 30 minute process each feeding.

DAY FOURTEEN

Wednesday, Jan 30, 2013:
Today we worked at trying to get William to relearn how to nurse. He would nurse for about a minute and then choke which made me scared and sad. I was sad because William was such a good eater before surgery and would not touch a bottle. I was hoping he would pick it up quickly so that we could bring him home. I was scared because I didn't know if it hurt him to cough when he choked on the milk. Also before surgery William would throw up everything at least once a day because of his acid reflux. I was so nervous of this happening as he was already needed oxygen to help him breath. We had someone come do some oral therapy and she said he didn't have very good sucking skills but suggested some ways to help.

DAY THIRTEEN

Tuesday, Jan 29, 2013:
Today they moved William out of the CICU to the 3rd floor. I wanted to badly to go up today and start taking care of him but the weather again was so bad I wasn't able to make it.

DAY TWELVE

Monday, Jan 28, 2013:

Today was full of good suprises and blessings! I called this morning and the nurse said she had good news! They were able to remove the PD drain because it stopped draining, they were not going to schedule a heart cath at this time because his heart rate had gone up a little bit which also means no pace maker will be needed at this time. Such a huge answer to our prayers! Also they were thinking about releasing him from the CICU in the morning. I was shocked! After what we had talked about the day before and thinking about going through another surgery this week this was truly a miracle. 

DAY ELEVEN

Sunday, Jan 27, 2013:
When we got to the hospital toady they had moved William into a different room. He had the room all to himself which was nice. I was worried they moved him because they thought he would be there longer but it was just because the CICU wasn't as full and wanted him closer to the other patients.

William over the last couple days had finally started to show improvement but today the nurse was worried because William's heart rate dropped into the 70's and stayed there over the last 24 hours. This is just one example of how much of a roller coaster his recovery has been. We were getting so excited that he was finally healing and that we were that much closer to taking him home and then we were told that there was talk about a doing a heart cath because his drain was still not improving and that they might have to go back into the operating room at the end of the week depending on how he did. We also met with a doctor to talk about pace makers as his heart rate wasn't where it should be. If William didn't improve we would have to start the whole process of healing over at the end of the week. Not to mention the worry of the unknown of why he wasn't healing and getting better and going through another surgery. We were crushed!

Today was hard but it was also so fun to see William smiling and happy. Today was also the first day that we were finally able to hold him! It had been a long 11 days without being able to hold and snuggle my little boy. We were in heaven.

Funny story, the nurses asked me if I had changed my diet recently because William had terrible smelling gas. The nurse was so funny about it and kept getting William to smile so big and do little giggles. I can't remember the nurses name but we loved her too. Stef came to visit today too. :)

DAY TEN

Saturday, Jan 26, 2013

Not too much changed today. We brought London up with us today so we could spend more time with her too. We switched off going into see William. He woke up as soon as we got there and stayed awake for a while. So fun to see him act more like himself!

DAY NINE

Friday, Jan 25, 2013:
It was so good to see William today after not being able to come up the day before. He had a little bit of a hard time breathing last night so they put him on oxygen to help the flow. They are a little worried about his PD line (chest tube) because it is still draining more than they would like. They tested the content and the results said that urine was in it. They thought the drain may have moved and hit the bladder. We later found out that that was not the case but they said they weren't too worried about it unless it doesn't slow down in the next couple days. They plan to do a heart cath on Monday.

Tonight was a bit frustrating. The staff at Primary's has been so sweet, helpful, caring, and willing to answer any of our questions - as dumb as some of them were. They never made us feel stupid as we tried to understand everything.  But tonight the nurse was not friendly at all and wouldn't answer any of our questions. William started to cough and asked her if that was normal for them to do after getting off the ventilator and she responded in a very rude way with,"He coughed......babies cough!" I felt so stupid. My son did just go through open heart surgery and if he were to get sick it could be very bad! We tried to ask more questions about how he did that day and what the plan was and we couldn't get anything out of her. I was so upset as I wasn't able see William the day before and wanted to be up to date with everything going on and she was being so rude. We sat there quietly for the rest of our visit.

On a good note, they put this mobile on his bed and he loved to watch it and hear the music.

DAY EIGHT

Thurs, Jan 24, 2013:

Today William turned 2 months old. I wasn't able to make the trip to Salt Lake because the weather was so bad. It was snowing and the roads were so icy. I called every couple hours to get an update. William made a lot of progress today. They took some LA (IV's) lines out and also the ventilator.  I've missed hearing his cry. Can't wait to see him