Pyloric Stenosis......what did you say?

I absolutely suck at blogging even more so with having Nolan and going back to work.  I know I have to get some things written down or I will totally forget more than I already do now.  Nolan came home from the hospital weighing 6 pounds 15 oz.  We went for our very first pediatrician visit. Tuesday, February 25th.  I was so hoping that Dr. Hartman would have our genetic test results.  J and I bundled up Noles and of course I dressed him in one of his cute outfits, a velour jumpsuit with a hood that has teddy bear ears.  (It was so huge on him, being a 3 month size and all.)

I really liked Dr. Hartman.  She had no concerns that Nolan was a downs baby, though she had not received the results yet.  He had lost another ounce and was now down to 6 pounds 14 oz.  She told us this was normal and hopefully he would continue to eat and add more ounces each day.  She did want us to come back in a week for a weight check just to make sure.  a

Mama and I made our next venture out of the house with Nolan, Wednesday, March 5th.  Nolan weighed 7 pounds 6 ounces!  We were so excited and proud of him.  I did let Dr. Hartman know that Nolan had started spitting up the day before.  Mom and I were in the living room and Noles was sleeping in his Rock and Play.  I heard him cry out so I jumped up and got over to him.  I even mentioned that I thought it had come out of his nose.  Dr. Hartman told us not to worry that babies spit up.    We left the doctor's and took Nolan for his first dining experience.....McCormick's and Schmidts.  Poor baby ate and spit up again.  He kind of would gag and out his nose and mouth it would come.  At this point it was not curdled, and there was a lot of bubbly mucus to accompany it.  We thought his car seat insert may have been the cause.  Over the next few days were were very good to hold him up after he ate for a bit.  Sleep at the incline in the rock and play. We made his changing pad at an incline.  Make sure he burped/  It was not every time that he ate but eventually more times than not he would spit up after eating.  We changed him to Gentlease formula. J even read online that we should boil his tap water.  So he would cook up a batch and serve it to Nolan's bottles from a silver pitcher.  We started think that Nolan had reflux like Parker.

It got more and more frequent and Sunday, March 9th was awful.  Nolan just didn't really want to eat too much. We were down to like an ounce at a time.  But he was eating every 2 hours.  Mama and I took him for his first stroller walk around the neighborhood, J's parents came over for dinner, and J grilled.  Nolan spit up every bottle.  He never seemed frantic about it and there was never warning. It could happen right after eating or even 3 hours after.  It started getting curdled too, which I read was older feedings.  That evening J fed him a bottle at 10pm and we went to bed. I woke up at 3 am and Nolan had not woken to eat. He had never gone 5 hours with out feeding.  I picked him up and changed his diaper, which normally wakes him up and started a bottle.  He really was not responding very well. Mama put a wet wash cloth to him and not much response.  Finally he woke up and took 2 ounces which he spit up all over me.

We decided that morning to call the Dr's.  The receptionist said she could have the nurse call me or we could just come in.  Mama and I got ready fast and headed him for a 10:15 appointment.  Nolan weighed 7 pounds 2 ounces.  He had lost 4 ounces in 5 days. That was a huge concern.  We fed Nolan and bottle in between being weighed by the nurse and Dr. Hartman coming him.  Nolan spit up all over her.  I guess it was kind of a blessing for her to see what he was doing first hand. Dr. Hartman wanted to do an Upper GI scan to see if his intestines were anatomically correct and to see if he might have pyloric stenosis. This is where the pyloric muscle is over grown and food does not pass from the stomach into the intestines.  She did not believe he had this or anything else but reflux because his spit ups were not projectile and he was not frantic. Radiology was able to get us in at 12:30 since he had to be 2 hours post eating.  We went to get his labs done while we waited for our scan. However, the wait for labs was long and Nolan proceeded to throw up all over his car seat.  We would have to do labs after our scan.

The X ray tech opened the door to the waiting room to call us back, took one look at us, and shut the door.  I guess they were not expecting a 19 day old baby????  When he came back to get us, I carried him back and mom stayed in the waiting room.  I undressed Nolan and was then going to have to feed him the barrium bottle so they could visualize his insides.  I took one look at that bottle and knew there was no way in hell that was going to happen with ease.  there was like 5+ ounces in that bottle and we were struggling to get 2 down.  Of course Nolan would not even take any of the bottle. The radiologist found this interesting because I guess babies love the taste.  I was given the option of waiting until he wanted to eat or they could do a feeding tube. I chose the tube because I knew he would probably never take the bottle.  I knew a feedind tube down through his nose wouldn't hurt him, but it was awful to watch. I had to help hold him down on the table.  We saw that his intestines were not flipped, not showing pyloric stenosis, but severe reflux.  I knew Dr. Hartman would call later after the results were confirmed. We went and had labs done.  My little man was such a pro at the heal stick since he had so many in the hospital to test for jaundice.

We got home around 2:30 and mom and I finally ate some lunch (which I am so glad we ate something.)  Dr. Hartman had wanted us to only feed Nolan pedalyte for the next 24 hours, so we did and he threw that up.  We took him on a walk while we waited for Dr. Hartman to call.  When she did, she told us yes to reflux and that she called in a prescription for Prevoset. His labs were good but that there was a tiny window before he would could wind up in the hospital.  I told her he didn't even keep the pedalyte down and I knew that was a concern.  She told us to call in the morning with an update.  An hour or 2 later and another sip up of pedalyte.....I thought it was time to call the exchange.  Nolan's coloring was off and he was just not himself, pretty lethargic. J had gone back to the office and was going to pick up his prescription on the way home along with some pedalyte.  The exchange asked a lot of questions and told us to take him to the nearest hospital.  I would not go the St. Joe's but wanted to take him to one with a children's ER. So I grabbed by glasses and a toothbrush and loaded Nolan in the car.  J said he would meet us there.

I took Nolan into the ER and mom parked the car at Mercy.  By the time she came back, I was already seeing the ER doctor.  I was very impressed.  We went over the course of the last week and all the tests we had done earlier in the day.  He had an iv started, which sucks to see them stick your baby.  But Nolan did not cry once. They give them this sugar water called sweeties which acts like a drug to their immature  nervous system.  We were going to be admitted and would have an ultra sound in the morning to check for pyloric stenosis.  (both the ER doctor and floor pediatrician were 95% sure it was not it)  To be safe, we were not allowed to feed him in case we were to have surgery.  We got to our 3rd floor room about 10pm and Mom and I were going to stay. J went home to take care of the dog.  Poor Nolan was just so unhappy and I am sure just hungry. I held him in the chair but handed him to Mama when I needed to go to the bathroom. He fell asleep in his Grand C's arms and she held him for 5 hours.

There was a little room on the floor that had some drinks, cereal, pudding and jello in the fridge.  Mom brought some vanilla pudding to me while I was holding Nolan and it was the best pudding I have ever eaten.  It was not made with skim milk!   Right at 8, they arrived to wheel me with Nolan to radiology.They do not mess around with babies.  We were wheeled straight into a room, no waiting again. The tech performed the ultrasound and I mentioned the upper GI scan did not show pyloric stenosis/  I asked her if she could see anything and she said the radiologist had to read it.  I knew then, something was probably wrong.  When the radiologist came it see looked at the scan and then scan herself.  She was like he has pyloric stensis and wondered who there had done his scan the day before. I had to tell her it was at a different hospital.  Wow, so I guess we are having surgery today.

I had to wait a while for transport to come back and get us to wheel me back to our room.  I called J while I was waiting and told him to hurry up, we were going to have surgery.  He was shocked as were our parents.  I called mom up in our room and she was just beside herself.  I was so not prepped for this.  All the doctors had told us they were pretty sure Nolan did not have pyloric stenosis.  The positive I was taking away was, this is a simple procedure and would fix him.  My poor dad was going to try and come in town if Nolan had to have surgery but there were just not any seats available or direct flights that worked.

By the time I was wheeled back to our room, our minister Adam, had arrived. J called him on his way to the hospital and Adam beat him here.  Our nurse informed us Dr. Cohn would be doing his surgery sometime today. His nurse practicioner,  Molly, came to describe the procedure.  It would be done laproscopically and he would have 3 incisions, 2 in the abdomen and 1 in the belly button.  From start to finish, it should only last 45 minutes.   Molly thought we would be in surgery early afternoon. So we were very surprised when they came to get us around 10am.  Nolan was wheeled down in his bed/crib and we all followed behind.  We prayed before we left the room and the transit guy even joined in. 

It pre op, we finally met Dr. Cohn.  He explained again to us what he was going to do and that it was a very simple procedure.  He just needed to go in and snip the pyloric muscle and Nolan would be good as new.  Adam asked Dr. Cohn if we could say a prayer and Dr. Cohn said he always does.  That was also very comforting. We met the anesthiologist and I thought he looked so young.  I gave Nolan kiss after kiss and hated to leave him.  I felt better knowing  Denise knew one of the pre op nurses who she demanded would go with Nolan. I did cry watching them wheel him to surgery.

We made our way to the in-patient waiting room. You check in with the desk and they give you a pager with a number associated to your loved one.  Then you watch the number on the a screen.  Different colors mean pre op, in surgery, post op, etc.  Mom and I took this time to go to the cafeteria and finally eat a meal.  I thought the taco salad was amazing….could be I was seriously hungry.  When we got back to the waiting room, Nolan was out of surgery and we were waiting to talk to Dr. Cohn.  Everything went as planned and he did great.  We were told he could eat as soon as he woke up.  We needed Nolan to get 2, 2 ounce feedings down in a row with no throwing up.  Dr. Cohn also told us not to be alarmed if he did vomit after the first couple of feedings.  Pretty shortly after seeing Dr. Cohn, our pager went off. This meant one person could go be with Nolan in recovery.  Mom trumped Dad and I went to see my baby in recovery.  He was sleeping so well….I know due to the anesthesia.  They let me hold him in a rocking chair and about 30 minutes later we were headed up to his room. Where we met J, Mama, and Denise. He had 3 orange daffy duck bandaids over his incisions. His color looked so much better already too. I just was so happy to hold him and kiss his face.  All the lead lines make holding him comfortably difficult but I didn't care.

At this point J went to get something to eat from the cafeteria and them Mama and I went home to take a quick shower.  We both showered an d got dressed pretty quickly. Mama was so fast!  We stopped to get a diet coke at the gas station (Mercy is a Pepsi hospital) and we were so tired that she thought the gas  station sandwiches looked good.  J texted me as we pulled into the garage that Nolan was awake and eating.   So we were now on the clock to get 2, 2 ounce feedings down so we could go home. I was pretty sure we would be spending another night in the hospital.  The first bottle came up a few hours later.  Since they had given him Tylenol, we had to wake him every 3 hours to eat. He was taking a little less than an ounce for the first few bottles.  I was nervous because Nolan was hardly taking 2 ounces at a time before surgery. I thought we might wind up in the hospital for a week before he took 2 2 ounces bottles in a row, let alone keep them down. 

Mama and I stayed the night with Nolan again. I just wonder how single parents are able to stay with their children if they have others at home. I was very thankful to have my mama there with me.  She even changed her flight home from Wednesday to Sunday to make sure little man was ok.  They left him on his IV and he was able to take infant Tylenol. I learned a good trick by watching the nurses give him the Tyleno;.  You use the pacifier in his mouth to help him suck it down.  I use it now when I have to give Noles medicine.  We had to set an alarm every 3 hours to wake up to make sure we gave him a bottle. This was certainly a role reversal, usually Nolan woke us up to feed him.  We left him in his bed most of the night and he did sleep well….probably due to the Tylenol.  He had plenty of wet diapers and was eating about an ounce to an ounce and a half.  He only threw up once in the night and then started what we thought was keeping the bottles down.  We were not up to the 2 ounces yet, but had hope that Dr. Cohn would discharge us. 

Both mornings a very sweet older lady came by the room to check in on Nolan and say a prayer.  It was so sweet and I really appreciated it.  He also was given a blanket sewed by a church group to take home with him.  About early afternoon we had a delivery from the gift shop.  It was a beanie baby camo sock monkey and a box of dark chocolate to Nolan from my Lakewood family. I was so touched.  It has been over 10 years since I worked at YMCA Camp Lakewood.  I have no idea who initiated it but I felt so loved and touched to be remembered. 

We saw Dr. Cohn around 4pm and he told us we could go home if we wanted, and we did!  I was still not allowed to give Noles a bath (couldn’t get the incisions wet.) I was finally able to put clothes on my little one once they removed the IV.  He weighed 7 pounds 15 ounces upon discharge.  I knew most of it was fluid weight but I was happy to see he looked more like his self again and the color was back in his face.  We got him home and fed and poor guy, around 10pm he just spit up all over his Grand C and was uncontrollably sobbing.   My poor guy was in pain, so J went and bought him Tylenol which seemed to calm him down.  We gave Grand C the night off and Noles  slept in our room next to our bed in his Rock and Play. 

Nolan is perfect and will never remember going through all this.  I will. It was terrifying and one of the most scared I have ever been.  God was with me and my little man as well as all those who were praying.  He eats like a pig and had already gained weight following his post op.  Our first weight check the Friday after surgery he was 7 pounds 5 ounces.  The next week was his one  month check up and Nolan weighed 7 pounds 15 ounces.  He was in the 10% percentile for weight, I knew that it would be a starting point because just one week later he was almost a pound heavier!  My little chunky monkey!