History from birth to 8-10-06

6-30-06

A good friend of the family, Tami Larson, came to visit. She has had extensive use of Children's Hospital with her 3 kids. She knows Dr. Sutton and believes that she will be good for Seth. Seth is on prostaglandin, a drug to keep the hole in his heart open. The drip rate is 0.05.

7-2-06

Things are stable. The drug (prostaglandin) that keeps the ductus arteriosus (hole in the heart) has been reduced to 0.04, and he is able to sustain a sufficient amount of oxygen (over 70%) in his system. Grandpa Rick is in town and able to give Erik a needed rest.

7-3-06

Things are stable. The prostaglandin has been reduced to 0.03. He is now opening his eyes more and following movement. Steff has been released from the hospital and is now home. We are waiting on the results of the echo cardiogram to see how long before surgery.

7-4-06

From Sara and Peter;

Sara and Peter were at the hospital in the morning. Seth’s heart rate was running a bit high; about 170 beats per minute. They got a picture of Lisa, Seth’s regular day nurse. She is now off for a week.

They went back after dinner and Seth’s heart rate was in the low 160’s. He opened his eyes and smiled (or was that gas). His regular night nurse is Rachel said it was a smile. Peter told her that she was an optimist. She will be off for a week also. The nursing staff work usually 12 hour shifts, but also in 8 and 4 hour shifts. It can be hard to remember the nurse's names as they keep changing.

7-5-06

Seth is still on prostaglandin, but they are working on reducing it to the point that he is not on it any more. If they are able to do this and he is stable then he will come home with us for a few weeks to get bigger before the surgery. He is more awake now and fusses a bit. He is also using a pacifier when he is cranky. I had my finger in it and it hurt a lot when he would chomp down. Let's just say I am still very glad I am a guy, OUCH!

Sara and Peter's update

Sara was at the hospital in the morning and met with the new day nurse, Wendy. After Wendy had wiped Seth down to clean him, she noticed that he seemed to be retaining fluid. When the cardiologist, Dr. Baker, came in he agreed and put Seth on Lasix, a diuretic. The evening nurse got the big surprise and the cleanup of the bed. The cardiologist decided to stop the prostaglandin as of 4:00am tomorrow (6th).

7-6-06

Sara and Peter update

Sara was at the hospital this morning. Seth had been off of the prostaglandin for 3 ½ hours. He woke up and stayed awake for about an hour. His eyes would follow the toys, which are hanging above him, when they moved. Seth’s oxygen levels were consistently in the low 70’s. Dr. Baker came in at about 9:00am and said that the 70’s is borderline to send him home or keep him in the hospital. He decided that a small surgical procedure would be done tomorrow. The surgery will consist of enlarging a hole between the atrium chambers of the heart.

7-7-06

Fritz here with the news:

The first operation went well. and was done by Dr. Gremmels. There was some difficulty putting Seth under, and then getting him back out. It seems he is a natural born boozer :)

Erik and Steff expect to take him home next week. Further operations are planned just before autumn flu season.

All went well with the surgery. It was a very long day though. Steff and I got up before 6 to express milk and head out. We met up with Mom and Peter around 6 am. By the time we got to the hospital he already was intubated (breathing tube). He did not like that one bit. They sedated him to do it but he wanted to wake up again. The nurse that did this told us after the operation that she had to sedate him about 2 times the normal dosage because he wouldn’t stay under. I agree with Seth, if your playing with my heart I would want to know about it too.

This extra sedation gave us worries later. He just didn’t want to fully wake up and breath on his own. The nurse unplugged the breather at several times but he wasn’t taking a deep enough of a breath not to be using it. That was scary for me. It took 4 hours before he got off the breather, and we were expecting 1 or 2 hours. By noon I was worried, but I had a meeting with Social services and such. When I got back he still wasn’t breathing on his own, but he did start to wake up a little more. Since Seth likes doing things the hard way he was really waking right when the nurse went to use the facilities. Once he was more awake he REALLY did not want that tube in his mouth. He tugged and pulled on it to get it off and I had to hold his hand so he couldn’t get to it. He stabilized and they took the breather off. He was very awake after that. Fussing and doing things that I would think babies should do. After they did their checking of vitals and IVs and such for the last time Steff was able to hold Seth. They rocked for a while and I read a short story. Seth then had a tube put down his nose so he could get his first taste of solid food! So mommy got to hold while Seth was giving his first meal. Then it was time for us to go and get Steff a birthday dinner.

Peter and Sara;

As the prostaglandin has been removed, the hole between Seth’s ventricles will naturally closed (this is the one which closes upon birth). To compensate for the loss of spillage between the ventricles, the Drs. put a hole in his heart between the atriums (the upper portion of the heart).

Seth went into surgery about 7:30am. Twice they added more anesthesia to him after the initial dose. They went through the bellybutton (where he still has two probes to his heart in) and added the hole. He was back in NICU about 9:30am. Because of the extra medication, Seth didn’t want to wake up. He started to stir at about 1:30pm and they removed the oxygen from a tube and his oxygen levels dropped. The nurse, Tami, reattached the tube and about 2:30pm tried it again. The charm was at about 3:00pm and Seth was breathing on his own with just a bit of oxygen flowing past his nose. His blood oxygen saturation levels are a bit lower then when he was on the prostaglandin but within an acceptable level. The oxygen was removed and Steff got to rock him.

Seth got his first feeding of colostrum through a tube placed in his nose to his stomach. If all goes well, he will come home for 2 to 4 months. The major surgery needs to be done before flu season sets in.

7-8-06

The major I.V.s that Seth had in his belly button were removed. The problem with this is that they needed to put a new one in. Let’s just say he was poked in almost every appendage. They had an ok one in his hand then he flexed well enough to bend it! Then came a new nurse to put one in his foot. After fishing for a bit she gave up and they got the pro in. She was able to get one into his foot, but it wasn’t easy for her either. Seth just doesn’t play well with people trying to stick needles in him.

Seth was having solid food, and this leads into his first feeding tomorrow. We might be able to give him a bath as well!

Peter and Sara update;

Peter and Sara showed up just in time to watch Seth’s nurse try for a second time to get an iv line established in the back of his left hand. Seth was having a good time tightening his muscles and moving the vein around so the pokes with the needle didn’t connect with the vein. Another nurse tried and failed, but the third one was the charm. She placed the line down by his foot. Lots of work for an iv line, just to have it removed when he goes home, but it is there for emergencies.

Erik, Steff, Peter and Sara then took a tour of the first floor recovery stations and rooms. This is where Seth will recover from major heart surgery sometime in the next 2 to 4 months. The set- up is 4 recovery stations, separated by a screen. After he has recovered from the surgery, he will go into a private or duel occupancy room. There will be one nurse for 2 children. After he has recovered enough there and is stable, they will transfer him to the 3rd floor for final recovery. We don’t know the length of time he will be in the hospital this time around, but have been told to expect a month.

When we returned, Seth was being fed Mom’s milk through a tube which is in his nose to his stomach. He was sleeping away when we left.

7-9-06

Seth's first feeding straight from Steff went well. He has a big mouth and knows how to use it. This is hopeful for a speedy exit to home to wait for the major surgery. Grandma Cherne made it in and got to be the first person besides Steff and Erik to hold the big guy. She did it like a pro and he was sleeping in no time.

7-10-06

Steff and I stayed most of the day for feedings. He was able to get a good amount but it didn't seem like he was processing it to well. Some would come back up and the rest would sit in his belly. It seemed processed but just not digested.

He is looking and acting well. Very active and very alert. He will follow you when you move and grab on tight to fingers... and his I.V.'s to try and pull them out. We are hopeful that the food issue will go away and we can bring him home soon.

7-11-06

The doctor called this morning and said that he hardly processed any of the food over the evening feedings. They are going to do another x-ray and dye test. There could be blockage, or a kink in his intestines. It could also be some sort of lactose intolerance. We are still waiting to find out. We might not find out until tomorrow.

Well we were able to find out right away that Seth has Pyloric Stenosis. This is a narrowing of the stomach as it goes to the small intestines. We are waiting on the surgeons to tell us when it can be done. This will be done soon.

7-12-06

We arrived this morning and waited. There is only one IV in him, but it is very disturbing. It is in his head. I looked at how many IV locations he has had and I counted over 13. There was 5 holes in his right hand alone. I know they will heal but it is disturbing.

At 11 am he was taken down to surgery and Steff was in a parent rest room. The surgeon was out and said everything was ok in about 1 hour. He is still sleeping but off of intubation. Tomorrow we will be able to feed again and see how things go.

7-13-06

Feedings went well. He is doing his job well. His heart rate is up a little, but so is his oxygen. He is a little fussy and sleepy but all in all things seem good.

7-14-06

We are exhausted today. Last night Seth got a fever, and we had stayed at the hospital to feed during the night to help get him out soon. Well since the fever kicked in, about 12am we couldn't feed him. His red cell count is up so he is fighting off something. I hope it isn't an infection in the surgery area.

To make matters worse something backed up/ leaked in the parent room next to us so there was a ton of racket from vacuums and the like and we got very little sleep.

Seth is doing a little better this morning and we are feeding him again.

Things went ok. Steff went to see Fiona Apple as a little birthday present to herself. I actually stayed home because I was so tired and Peter took her.

7-15-06

We came in to see Seth and had another little shock. The IV in his head had gotten loose or off during the night. The IV's continued to pump fluid into his scalp area. There is a little bubble of fluid under the skin which makes his head feel puffy. This fluid should get absorbed eventually back into his system. He has a dime sized wound in his head where this happened. They say he might not grow hair there anymore. It is far enough forward on his head that if it doesn't re-grow correct we might want to grow his hair longer to cover it or do a "hair club for men" sort of thing and move hair there from somewhere else. Just another thing to add to the list of things to watch.

The gram staining from his blood came up positive for some sort of infection. They are going to continue him on antibiotics to clear the infection. This will keep him in the hospital for another week to 10 days.

On a good note the food that they are giving him is being digested.

Some harder to look at pictures have been added to the pictures pages.

7-16-06

Sara and Peter got to the hospital at 1:00pm just in time for Peter to rock Seth for about 50 minutes while he was being fed through the tube in his nose. He is took just over an ounce of Steff’s milk and didn’t have a problem digesting it. Peter got called into work so Sara took over the rocking for the next couple of hours and another feeding went off well. The nurse is increasing the feeding a few grams each time. They took him off all supplement food, which was nutrients being delivered through an IV, except a little sugar water. The hole where the IV blew is starting to scab over and doesn’t look as bad as in the picture and he is not running a fever. Dr. Burton, the cardiologist on duty said that from their perspective he good to go and grow. But it will be another 4 to 7 days of antibiotics before he can leave. Peter came back and rocked Seth until they left for church.Steff and Erik stayed at home because Erik pulled a muscle.

7-17-06

The feeding tube is going to be removed and the IV's are going to be reduced from a feeding mix to basically a saline solution.

7-18-06

Seth was moved from NICU to ICC. It is located next door to NICU. The room is large and there are only 6 babies. There is enough space to be by Seth and other rockers in the room for Sara, Peter or Erik to rest while Steff is nursing. This room is very quiet in comparison to NICU. The babies are more stable and alarms aren’t going off every few minutes. Seth was moved from his initial ‘bed’ to a real crib. It is a full size crib and he is so tiny in it, even though he is a big baby in comparison to one of his roommates, George.

George was born 2 months early at just over 4 pounds.

7-19-06

Seth is stable and Steff is working on the nursing routine.

7-20-06

Last night Seth shook out his IV. The nurse practitioner tried to put another one in and couldn’t. She suggested that the nurse taking care of Seth call the anesthetist to put one in. Seth was moved to the 3rd floor. George was moved also and they share a room together. It is nice to be in a semi-private room. There’s a desk and couch and we are able to bring our laptops. Cell phones still can’t be used. Seth and George were moved because NICU is slowly being remodeled and as an NICU pod is being renovated the 6 babies from that pod will be house in ICC.

Sara saw Dr. Sutton at about 9:00am. He said that from a heart perspective Seth was ready to go home.

About 10:30am, Dr. Roy Maynard came to put in Seth’s IV. He explained to Sara that Seth is out of veins for IV’s. Dr. Maynard is Seth’s neonatologist. Sara was there when he got the needle to draw blood and thought the procedure was all over, only to walk out of the room and come back in a few minutes to hear Seth screaming. Seth must have crinkled the needle. Pam, Seth’s current nurse came out and asked Sara if it would be ok to put another IV in Seth’s head. Sara requested that be done only as a last resort. It took Dr. Maynard about 30 minutes to finally find a vein to use in Seth’s hand. With luck, this will be the last time he will need an IV. He needs a few more days of the antibiotic for his blood infection. Seth slept most of the day after that procedure.

Steff and George’s mother, Katie are getting to know each other. Katie lives in Jordon which is about 20 minutes south of Erik’s and Steff’s home

7-21-06

This has been the first really non-stressful day. Seth is awake more and very alert. Dr. Maynard was amazed to hear how much milk Steff can produce in a few minutes. Seth should be very well fed. Dr. Maynard ordered the feeding tube removed and the antibiotics stopped. ---All that work and pain for just one more dose but the medicine had to go directly into the blood stream, but the IV is staying just in case--- Seth is now on a sink or swim routine. He has to prove that between the bottles and nursing, he will gain enough weight and continue to grow after he goes home. Some heart babies have a difficult time sucking down their milk. Seth doesn’t seem to have that problem and hopefully will be discharged soon.

Sara and Peter went down to give Seth his 10:30pm bottle and Seth got a few hours of quality rocking time in.

7-22-06

Seth’s IV came out at about 12:30pm, and he is feeding like there is no end to his stomach.

7-23-06

Well Seth wasn't as energetic about eating after we had left yesterday and he lost more weight, so he is back with a tube to make him eat a little more. This is delaying how long we will have to wait until we bring him home.

The nurse really upset Steff when she didn’t let her feed him one last time before they put the tube in him again. He was crying for almost 1 hour straight and that tired him out so much that he didn’t want to feed much for the rest of the day from Steff.

7-24-06

Steff and Sara got to the hospital at about 8:00am. There was an order for a spinal xray and ultrasound to be done at 9:30am. We hadn’t be informed that there might be other problems with Seth. Sara went with the transport to take Seth to the 1st floor. The ultrasound was first and then the x-ray. Dr. Maynard had order this because Seth has a deep dimple at the base of the spine. What they were look for is call Tethered Cord, where the spinal cord is attached to be end of the spinal column instead of hanging loose. It would mean another operation. We found out at about 4:30pm that he doesn’t have this problem, only a cute dimple.

7-25-06

When Seth is put on his stomach, he is starting to raise his head and give the arm and leg motions that he wants to crawl. It will be nice to have him home to work on that skill.

7-26-06

Big day today. Seth has been circumcised. His feeding tube is out again because he was eating well. He liked having use of a swing. More pictures have been added to the All Pictures area.

7-27-06

Seth’s going home!!!

At noon today Steff and Erik had Seth baptized by the hospital’s chaplain, Jerry Vandrovec. Then the great news came at 2:30pm; Seth can go home. Sara went home and got the car seat while Steff packed all Seth’s bags. It’s amazing what he accumulated in almost a month’s time. Seth was released from all the bells and he took a stroll over to see George and his mother Katie to say goodbye. George will be in the hospital for about another week.

7-28-06 - 7-30-06

Things are going well at home. We tried to catch up on too much cleaning and Erik took a step backwards with his back. Seth has slowly started to eat more, and sleep a little less, but more often. Seth really enjoys his swing.

It seems every time we put food in one end it comes out the other with much, much, much more force.

We have had a few visitors but we have been keeping it quite for now until we are settled back in.

8-2-06

Steff and Sara took Seth to see Dr. Sutton, Seth’s cardiologist. An x-ray was done and Seth’s heart is slightly enlarged. He goes back next week for a ultrasound to see if the heart is continuing to enlarge.

The other thing that is getting larger with Seth is his gas. I have a hard time understanding how so much gas can come out of a little guy like that.

8-3-06

Seth was weighted and measured by the nurse who comes to the house. He is now 10 lbs. 11 ozs. and just short of 23 ½ inches long.

8-10-06

Seth had ultrasound done today. Dr. Sutton said that he was progressing nicely and wasn’t as concerned about the enlargement of the heart this week. If Seth can continue to progress as he has been, his surgery may be put off for a few months. Although flu season is a concern, Dr. Sutton would rather have Seth continue to grow and do the surgery later. The narrowing of the vein to the lungs is now the greatest determining factor as to when the surgery needs to be done. Seth is now just over 11 pounds.