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!

A litte frustrated

As I have gone through my life I have had moments where I pray to God and tell him that I just can't take anymore. Many of these moments have been in the last few months and I am sure more are in my future. I look at what I have gone through and then I think about Stockton. The little guy has such huge obstacles to cross and was born with an imperfect body. Lately, has been quite the struggle for him. Stockton is up to eating 40cc which is exceptional. (Sometimes more but sometimes less.) Last week they started giving Stockton some extra calories in his bottles. He seemed to be tolerating them well. Last Friday after he pulled out his NG tube they replaced it on the other side. Stockton has really not been the same since then. I am not sure if the NG tube is bothering him but something is. They changed the brand of calories he is getting so hopefully he wouldn't be so fussy after eating. Well, that didn't work. We were giving him gas meds and the poor little guy would just scream after each bottle even though he was so hungry. Sometimes he would get so upset he would just throw up his entire feeding. Stockton is now on an acid reflux medicine and we will see if that helps. I just get irritated that there are so many factors for why he would be fussy. Yes, he could have acid reflux, but what about the new brand of calories? What about the NG tube, that could be bothering him. What about the doctors thinking that he needs all these calories. Have they looked at my husband and I? We are little people. Tylee has never been in the upper percentile for weight. We are lucky if she is in the 30%. There are so many things going on and I am to the point where I think the hospital is doing more damage than good. I just want to go home and feed Stockton with plain breastmilk. He was doing great on it before. With these heart babies they are so worried about weight that I just get bothered. I just want Stockton to be ok and not be bothered all the time. The poor little guy has gone through enough in his first 3 weeks of life.

The Last 7 days...

We have been in the step down unit for a week now and Stockton is doing really well. The doctors changed his NG (nasogastric) tube feeding to bolus feedings each day. This means that he is getting 2 ounces in a short amount of time so that he can start feeling hunger in between. I told the doctors yesterday that I wanted to start feeding Stockton more bottles. He now starts each feeding with a bottle and we put what he doesn't finish in his NG tube. Stockton started getting 60cc (3 oz.) but it was just too much for him. I noticed that with the last 10cc that he would get fussy and sometimes even spit up. I changed his feedings to 50cc and the doctors agreed that it was better. It is very important for heart babies to gain weight and Stockton has been doing really well. We put less than a teaspoon of formula in my breast milk so they can boost his calories. On Tuesday night Stockton managed to tug on his NG tube a little so they just put it back down. Then on Wednesday he spit it completely out of his mouth. They replaced it a few hours later down his left nostril this time. Stockton has his stitches taken out of his belly from where the dialysis and chest tubes were. They are healing really nicely. The nurses say that he is the loudest crying heart baby that they have heard. They took Stokcton off telemetry and they told us they will take out his PICC line on Monday. HURRAY! He has had that stupid thing in since August 3nrd. (The same PICC line that caused his body to crash. We hate that thing.) Stockton still can't take his entire feeding by mouth but it up to taking 30cc at a time. We are so proud of his improvement.

 We have started the discharge process but we will most likely be here another week or so. They are very careful with Norwood patients and want to take things very slowly. They give us a little information each day. The doctors and nurses basically told us to be hermits for the next few months until his next surgery. They gave us a huge list of "not to do's" and important contact information. For example if he has diarrhea or is throwing up and get dehydrated then we need to bring him to the hospital and he bought himself 24 hours on IV fluids. They said any sickness he gets can push his next surgery back 4-6 weeks. We are not to take him to any public places especially in the next 4-6 weeks. )No church, no grocery store, no family reunions) They also told us to do our shopping during off peak times and to change our clothes once we got home and then wash our hands. This is making us second guess letting Tylee go to nursery. We are not to let children touch or hold our baby and the recommended not to have any other children in the home. We know many people want to see Stockton but that is just not possible. We can't have every person come over and shower nor can we trust where they have been. We basically just need to protect this baby from everything we can. The docs said that it is so important to keep this little guys healthy that it would be best to limit how many times we open our front door. They really are so worried about this that they try to scare you straight because it is so important.

On Monday night I was going to stay at the hospital by myself. This was going to be Seth's first night away since Stockton was born. I started to feel a little chest pressure so I took some Tums to see if it would go away. Well, after a few more minutes I realized I was starting to have a gallbladder attack. Ugh! This would be my third one now. I didn't have my pain medicine that the doctor prescribed me so I called my Mom and Seth. My mother said she would stay the night at the hospital so I could go home. I can't tell you how painful these are and how thankful I am for pain medication. I slept for 6 hours straight which is the longest stretch in almost a month. I am so thankful for my mother and Seth. My Mom has helped us out more than she will ever know. Seth continues to be the stronger one of us and I am happy to lean on him. I am so grateful to be apart of such an amazing family.

Step Down

We are officially blogging from the cardiac step down unit! Yeah! We were able to start holding Stockton again on Wednesday. It was so nice to hold our baby after a long week of just looking at him. I can't believe things are moving so fast. They took us to the step down unit yesterday and it is so nice to stay with him during the night. The past 2 weeks we have been staying at the Ronald McDonald House which has been such a blessing. The doctors are still worried about his kidney function. Usually, they like to see kidney function post heart surgery at 50-60%. Stockton's kidneys are only working about 25% but seem to be doing better everyday. Stockton seems to have his nights and days mixed up. Our first night with him left me exhausted and I didn't sleep hardly at all. He is still getting continuous tube feedings but I got to feed him a bottle today for the first time. The occupational therapists are trying to build his mouth muscles because he has never received anything by mouth. He is doing such a great job and they are really impressed. Bottle feeding is our only obstacle from going home. I can't believe it. I am so scared to bring him home. Sometimes I get really frustrated with the way they do things at the hospital. I have really started to speak up about how I want things done. I get really irritated when they don't cluster their activities. Just this morning Stockton had a EKG, a echocardiagram, an x-ray, 2 doctors visits, a PICC line specialist visit, occupational therapy, a bath and a few other things. From 4am until about 9:30am he was bugged every half hour and it was getting really irritating. I finally told them that they needed to start clustering stuff because it really pissed me off that they would wake him up every time he had just fallen asleep. You can't forget that the nurse is taking his vitals every four hours and random alarms are going off. I think I got a little short with people today but I don't care. Another thing I mentioned to them was about some adhesive remover. Sometimes the staff will just take off his leads that are stuck to his skin without using the adhesive remover. HELLO! Obviously he is crying and it hurts him. That drives me crazy! All of his tests he took today came back normal and the doctors are really pleased. Dr. McKenzie came by today and he said Stockton looks great. I love Dr. McKenzie. He is truly a miracle worker. Well, that is all for now. We just want our little guy to start gaining some weight!

Why the name Stockton?

Well, I am asking myself the same question. I think that boy names are rather hard to come up with. To be honest I like more traditional names like Zachary, Steven or Benjamin. I also pondered the names Ryker and Mason. Before Seth and I ever got married I would tease him that he would probably name his child Michael Jordan, John Stockton or even Karl Malone. During this pregnancy we joked a lot about calling the baby Sloan (after Coach Sloan) and we started to joke about calling him Stockton. There was no way I would ever give into that, right? I took a trip to Utah and I joked with family and friends about the name. The name kind of started to stick and that is what I started calling him when he was in my belly. Seth actually became a little hesitant and we both became rather unsure of what to call our baby boy. Well, when I went into labor Seth put up a few names on the dry erase board. Stockton just seemed to be his name.When Stockton was born he wasn't a Steven or a Zachary, he was our baby Stockton. Who would have thought that I would name my son after my husband's favorite NBA player? Not me, that's for sure. Seth is overjoyed about our son's name and I am happy that he is happy.