Totals

I looked over our bank statements and we paid a total of $417.00 in just parking alone. I have tallied up our food costs and it looks like it is around $200 but that does not include the $300 plus dollars we received in giftcards. We were fortunate to get 3 meals a day for free because I am breastfeeding. Who knows how much it would have been if that were not the case? We spent about $100.00 in gas but that does not include what my mother spent in filling up our cars while we were away. The bills have started to flow in from the physicians and the hospital. The grand total for his visit is $103,381.00! Wow! Well, we already paid my $3,000 deductible and now we have to pay Stockton's $3,000. Luckily, every visit until the end of the year is free. We are so grateful for insurance!

1st Single Ventricle Visit

We went to our first single ventricle clinic visit this past Tuesday and it went relatively well. The problem was that I had a 7:30am appointment and was not see until 10am. Then Stockton's 9am appointment was pushed back to noon. It was sort of a nightmare but we had to do it. Stockton had an echo, an x-ray and an EKG. The doctors discovered that his tricuspid valve is leaking a little. (Meaning some blood flow is going the wrong way then pools then goes out the right way.) The increased his Propanolol to see if that would help. The doctors said this is a common finding but they like to see it very minimal and Stockton's is moderate. Everything but that seemed to check out. Stockton weighs a whopping 8.8 pounds. He is doing so well at home. His schedule could be a little better but we are working on it. We have another visit in two weeks.

We are home!

We have been home since Tuesday night.We are so blessed to have both our babies under one roof. We just love having Stockton in our home. We are so busy that I can't even remember what life was life with just one child. I am lucky to take a take a shower before Seth gets off of work. We will continue to update as we go to Stockton's appointments. Thanks for supporting us through this crucial time.

UGH!

I know I sound like a complete pessimist but I am really trying to pull through each day. I look at Stockton and just think about how strong he is. Well, today he actually lost a few grams so we are not being discharged. We have been told that we were going home for the last 5 days. Everyday seems to get a little bit more disappointing. Stockton will gain weight for a few days then when we are ready to go home he loses a few grams. Yes, I am talking about little grams. You wouldn't think that was a big deal but it is. He lost 30 grams today after gaining 90 grams yesterday. The doctors came in today and told us to not plan on going home until after the long weekend. So as for now my mother is coming for the day so I can have a break. Seth has been such a rock through this and I am so glad I have him. Please keep praying for Stockton. We love him!
 

Still here

Yes, we are still in the hospital. Stockton is still strong and they are just watching him. They continue to watch his weight closely. I have to tell you that it is so frustrating that the doctors tell you everyday that they want to watch him "one more night." They have said this everyday for the last 3 days. Yes, I have hit my breaking point. I can hardly stop crying and I just want to get out of here. I am a little disappointed in the attending physician and nurse practitioners on this floor. I find that they don't really look at the family's needs and just go about their day. Stockton has been progressing much better than anyone had thought but I think he will do even better at home. Sometimes the doctors wonder why he is not gaining weight rapidly but I finally told them that people bug him constantly. He is woken up from almost every nap because someone needs to do some lab or some test. I told them to just leave him alone and that I would call them when he was awake if they needed to do something. I am sure they think I have a bad attitude but I do. He is ready to go home!

Another Room

They have moved us to another room that is in the "stable" cardiac area. This is just another step to us going home! I can't believe it! The end is in sight. (Well, for this go-around anyway.) We may go home tomorrow or on Tuesday. Please pray that Stockton stays strong. We are learning to draw up his medicines and learning what his schedule is. We have called in his prescriptions to the pharmacy and we only have a couple more things to be done. Thank you for all of your support and continue to pray for him.

DAY 27

I can't believe that this Saturday marks 4 weeks that we have been in the hospital. I have to tell you that the last few weeks have just blended together in a daze. Sometimes I don't even know what day it is. Stockton is improving with his eating habits and seems to be on a bit of a schedule. He has maxed out at 61cc but continues to remain in the mid 40's. We came into the hospital with two other hypoplastic left heart babies and they have done really well. One of them has only been here 3 weeks and he was discharged today. We are so happy for their family and we hope to keep in touch with them. Stockton was a little fussy last night but has seemed to catch up on his sleep this morning. He is only waking up to eat every 3 hours. Stockton's acid reflux medicine has seemed to really help. THANK HEAVEN! The poor little guy was just getting too upset after eating. This morning he pulled out his NG tube, again, and they replaced it. The doctors are going to take it out tomorrow permanently. YEAH! Our mornings are quite busy and sometimes they can get a little draining. Today we had visits from just about every person in the hospital: occupational therapy, x-ray team, the Attending Physician, our nurse practitioner, the phlebotomist among many others. Mornings are so draining but it's nice to know there is end in sight! Hurray Stockton!