Sometimes.....

We have been having great "normal" days. Severin has gained 8 oz again this week. This is great because he really prefers nursing, over the high cal. bottle. I figure he could burn through 30 cals. screaming while trying to get a 27 cal bottle in him or I can nurse him and he gets all 20 cals. I do my best to get him to eat 3 bottles in a day. He has discovered his fingers. When he finally gets them to his mouth and starts to suck he gets a disapointed look on his face when there are no milkies. He is being very stingy with his smiles. I will post a picture as soon as I catch one. Sometimes I pretend Severin has a healthy heart. He looks good. He is growing. He makes baby sounds and doing baby things. His eyes are very captivating. The next miracle we look for is a good nap without Neleh screeching, laying on him in his swing or climbing in his bed with him. It is amazing any of us survive siblings! I even over look the oxygen tubes we all trip over, as I carry him around the house. His next surgery is always in the back of my mind.

Growing AND Growing

Severin had his weight checks this week and he has gained 8 oz in a week! The hope was for him to gain 3 oz a week, he has again amazed us all. I started nursing him more at night. I was nervous he wouldn't gain because he was using his calories to nurse. But I guess he is getting all he needs. He weighs in at 10 pounds! Good job Buddy!

no more NG tube!

This morning Severin decided he was done with his NG tube. I went over to get him out of his bed, and his tube was completely out of his nose. I told him that was fine but it means he needs to eat his whole bottle all the time. He has been eating 80cc every 3 hours, that is almost 3 oz. Then he nurses twice at night. Yesterday he preferred nursing, this made me a bit nervous because he still needs a higher calorie. If he chooses nursing over bottle, I'm going to need to be a bit more creative with the calorie intake. He is also smiling today. We haven't been able to get a pict. of it yet- he is pretty shy.

2 month well baby visit Sept. 9

Severin saw Dr. Paxton today. He weighs 9.4 and is 22 1/4 inches long. He had his first round of Immunizations. The benefits out weighed the risks. I was really worried about doing anything routine with Severin he seems to react in an unrountine way. Dr. Paxton is a big advocate for immunizations. I am not against them, I just know Severin is his own kind- of guy who doesn't follow the rules. As of the calender right now we do not see the Cardio. until Oct. 20 and Dr. Paxton until November. Lets hope we can stay Dr. & hospital free for awhile. Oh and he is eating 75cc today and doing fine. If he can do 80cc then the NG tube can be gone this weekend. YEEEEE HAAAAW!!!

Cardiologist Appointment Sept 8

Severin had his first Cardio visit with Dr.Su. From a heart stand point he is doing great. He goes back in a month. His goals for this month is to get rid of the NG tube, which I say yeah to because I was up every hour last night resetting the stupid pump. I hate that thing. He is almost there. He wakes up to nurse while he is on continous feeds. So he eats every 4ish hours through the night. Dr. Su is also very encouraging about nursing. Second goal is to decrease oxygen need. I said this is opposite of what I have been told. Dr. Su wants him to be as "normal" as he can by the next surgery. I still laugh about the word normal. Dr. Su doesn't say normal he said something about physiologically somethin' somethin'. Severin is currently on 1/2 liter of oxygen, I can't see how he is going to go down when he has been going up. If he can not decrease his oxygen need they will look at doing his surgery sooner. He has a bit of a snotty nose right now so I will try when that goes away. All the kids are coughing and snotty nosed, WELCOME FALL!! Pediatrician tomorrow....

Good days are here again!

Today we took a family trip to see my parents at their house. I was a bit worried about Severin handling the altitude. I educated myself and he did great! I was so nice to be out as a family. My parents home is very comforting, and fun for the kids. Yesterday I took Severin to church. To introduce him to the Ward that has been praying so hard for him. I felt impressed to share my testimony about the Plan of Salvation, prayers, Priesthood, and miracles. Being a family forever takes on a stronger meaning when your family includes a heart baby. Severin has endured so much and is expected to do so much more. The power of the priesthood is with me and my family. Prayers are heard. Miracles are granted when they are asked for in faith. And in my case, at times, begged and pleaded for. I say prayers with Severin every night. First I thank his heart for working so hard to keep him here with me, next I thank Heavenly Father for allowing me another day with my son, and then I ask for one more day.

Severins CRAZY Tuesday

After dropping Johnathen off for his first day of school, we had Severins circumcision scheduled at his Pediatricians office. We knew this had its risks; bleeding, infection. We thought we had asked all the questions, to all the Drs. The Cardios said it had to be six weeks post op, and asked us to make sure our Pediatrician was comfortable with the risks. The only answers I could get to why people wait was because the anatomy was not sufficent and they needed to be under general anesthesia. Severin is on asprin, but he is not an easy bleeder-just ask the IV team. Our Dr. was confident the this would be a success. For a moment this would be a "normal" proceedure. We did not take into account that this is Severin and he doesn't do anything "normal". Everything went well, Severin didn't even cry. We waited to check bleeding, and everything looked ok. I ran kids around and it was two hours later that I fed him and changed his diaper. He had soaked his diaper with blood. Yes I did swear, and immediately called the Dr. I went into the after hours clinic our Ped. was not on call. Dr. Valdez said he knows Severin, they talk about how amazing he is all the time. He tried to cauterize but still could not control the bleeding. After one more attempt using a type of material that would form a web for the platelets to collect on and hopefully from a clot, I went home. It had stopped dripping and was now oozing. If it was still bleeding when I got home I was on my way to Primaries. Of course it was, and we were on our way for ER visit # 3. Thom and I were kicking ourselves for putting him through this. It was totally elective and now he has to endure more. At Primaries they had some stuff called surgicell brought in from the OR. It looked like quilt batting, white and fluffy. It has clotting medicine in it and then it dissolves into the skin. It still was not stopping, so they put more on and we wait. They did a heal stick to get a hematocrit- the level of red blood cells. He was at 27. They decided to admit him. They started an IV and did another hematocrit, that time he was a 33. Last time he was in the ER his count was 51. He still needed to get the bleeding to stop and replace what was lost. The Cardios want him to be 40 and above. When we made it to the room on the 4th floor, they took off his diaper and he looked great. I asked what kind of magic elevator they had that could stop bleeding.With the bleeding stopped now he still needed a blood transfusion. After the first transfusion he was still at 33. We seemed to have caught Severin in the perfect storm. He is of the age when his red blood cells are low as it changes from the fetal state. The red blood cells carry the oxygenated blood around, so when your red cells are down the oxygen need increases. When blood is sparce it goes to the major organs to maintain life, skin being the last, so in therory a skin proceedure should have been ok. The asprin makes the platelets disorganize so they can not clot. They think his body had not regulated to give an accurate count, so he was probably lower then 33 before the first transfusion. They kept asking me if he was more pale. I thought he is a white boy he is always pale. After his first transfusion I realized how pale he really was and how pink he had become. After the second transfusion he was doing much better. We stayed the night so they could keep monitoring his O2, & bleeding-which was none, but they did give his asprin again. He started sounding a little snotty nosed. He didn't have a temp. & his lungs sounded good, so we were outta there! I have learned I am not going to say I think I'm at my breaking point, because everytime I do I'm pushed a little farther. The up side is I know I am able to continue to raise to every occasion, but I'd rather not do all this. And we know without a doubt this will never happen to Severin again- you can only be circumcised once. In the ER Severin and I decided we were not going to come back until his next surgery. He smiled so I think he was agreeing with me. As of tonight he is doing great, his normal.

Johnathen starts Kindergarten !!

This is what I wanted to post on Tuesday. My big boy started Kindergarten. He is so handsome! Dad came home to take him to his first day too. Johnathen was so excited he ran in to the school. I was video taping carrying Severin, Thom and Neleh following, I could barely keep up. This is the down side of the 10 year gap between Morgan and Johnathen - he is my first again. He is loving school. No I didn't cry, I got it all out the night before.