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Newborn Pyloric Stenosis surgery

Baby Caspian had to unfortunately spend his one month birthday in the hospital. Shortly after he was born, I noticed he would spit up after every feeding. His first two weeks were ok, it wasn't anything abnormal, but then the spitting up progressively worsened during the third week, and turned into projectile vomiting. I would feed him two ounces, and he would throw it ALL up. At first I thought, ok maybe he is allergic to the type of formula we are giving him. So we changed his formula, and he would still vomit it all up. Then I thought I'd try to feed him less but more often....which didn't work either. He would literally always throw up. It would get all over my clothes, and all over his clothes. We would both have to change our clothes multiple times a day. 

After a few days we took him to the doctors. They told us that this is either severe heartburn or pyloric stenosis, and that the only way they can tell if it is pyloric stenosis would be via ultrasound, which would have to be done at the hospital, and which would have to be done right away because if it is pyloric stenosis and not treated early it could be life threatening. 

So of course we rushed off to Fairfax Hospital, leaving our one year old at home with a babysitter. In case we would have to stay at the hospital I quickly packed a bag for all of us and off we went. This all happened at night in the middle of a snow storm. 

We arrived at the hospital and had the ultrasound done. They determined that he did in fact have pyloric stenosis, and that he will likely need surgery to fix the problem. Pyloric stenosis happens when the pyloric muscle that connects the stomach to the intestines is too thick, therefore blocking food from passing through to the intestines and creating a buildup of food in the stomach. 

We then went to the ER where they poked him a million times until they got his vein to run an iv. My stomach was in all kinds of knots. He's just a little 4 week old! Poor baby! He would scream and cry, and we would soothe him by giving him a pacifier dipped in sugar water (which they told us was a natural pain reliever for babies). He wasn't allowed to drink anything and we hadn't fed him since 1pm earlier that day.....and it was approaching 9pm. We then waited and waited and waited some more until we heard from a doctor. 

pyloric stenosis newborn surgery

Just waiting in the ER sucking on his sugar water pacifier.

pyloric stenosis newborn surgery

During this time I was freaking out in my head, but remaining calm and trying to give off good energy to my baby. When I saw them poke him over and over again, with him screaming and shaking, I thought I was going to throw up. 

We then spoke with a doctor who advised us to stay the night and have Caspian undergo surgery the following day. They told us to expect to stay for a couple of days. 

Then they wheeled him up to his room in Peds and monitored him through the night. The doctor told us to anticipate the surgery happening the following day, as his potassium levels were off and they needed to make sure all his levels were good before the surgery. 

While in his room, he was fussy, his lips were cracked, and he looked like he was starving. I asked if I could dip his pacifier in sugar water but they said no. Poor baby :( 

We hardly got any sleep that night. 

The following day was frustrating as we had to wait and wait, and then wait some more, until we were given an idea of when he would have the surgery. At this point Caspian was so weak from starvation that he barely had energy to cry, and when he did cry it was a faint dry cry. 

When it was finally time for the surgery, they wheeled him down to that area outside the operating room where we wait for his turn. While waiting, there was a family in front of us there with their 11 year old daughter who had cancer and was on dialysis. Listening to the doctors talking to them made me feel ridiculous for freaking out about Caspian's simple surgery. I shed a tear and prayed for them. That poor 11 year old girl. My heart bled for her and I died a little inside.  

As we were waiting we talked to the pediatric surgeon, Dr. Soutter, who reassured us everything will be ok and that this is a common surgery. He really made us feel a lot better about the whole thing, and explained exactly what he will be doing and even drew us a little diagram. He explained that he will go in through his belly button and cut the pyloric muscle to make it shrink. Then came the anesthesiologist, who explained that she will be administering anesthesia through the iv and also through a gas mask. She told us that even though he ate over 24 hours ago, his stomach still had food in it (this is because it takes longer to get through to the intestines because the pyloric muscle blocks it). Because his stomach wasn't empty, she told us she would have to put a tube down his throat (while he is awake) that sucks out all the food. When she told me this my face turned white and I almost fainted. While he is awake?!?!??? WHAT????? I expressed concern about him being awake for it and she said there is no other way. 

So it was finally his turn. We kissed him goodbye and they wheeled him to the operating room. Me and hubby sat in the waiting area fidgeting and pacing. The surgery went quick; we waited about 45 minutes and he was done. The surgeon told us the procedure went well and everything looks good. For pain he advised us giving him children's Tylenol once we are home, and told us not to be alarmed if he throws up a few more times after eating. 

While waiting for him to recover in the recovery area, we gave him a few sips of sugar water. We would have given more if he weren't so sleepy. All he wanted to do at that point was to sleep. When he was wheeled back into his room, I gave him some breast milk that I had been pumping throughout the hospital stay. The nurses provided me a pump and all these bottles. Even though I didn't have much milk I would still non stop pump. A few hours after his surgery he drank half an ounce of breast milk. They advised me not to breast feed because they needed to know exactly how much he was drinking, and they would also count the number of wet diapers. They had to draw blood from him that night and again kept on missing and poking him multiple times. 

Fairfax Hospital pyloric stenosis newborn

pyloric stenosis newborn surgery

The following day we went home. At home he threw up only once, but we really noticed what a difference the surgery made for the better. I can't say enough good things about Fairfax Hospital. All the nurses and staff were so kind, helpful and loving towards Caspian. 

pyloric stenosis newborn surgery

The first night home was a nightmare. Caspian was non stop crying, and no matter what we did he would not be soothed. Tylenol wasn't working, walking him up and down the stairs wasn't working....literaly nothing would soothe him. His cries were so dramatic that he would turn red and his whole body would shake. We got scared and called his pediatrician in the middle of the night. They advised us to give him Tylenol every 3 hours instead of every 6 hours. That night we didn't sleep a wink. We actually didn't sleep at all for an entire week. That was an incredibly difficult week. Looking after two babies with one requiring way more attention took it out of me. For the first few nights back from the hospital I would have Caspian sleep on my chest in bed with us. Normally I would never do this, but given what he's been through I thought that he would appreciate being held close through the night. 

pyloric stenosis belly button newborn

For the next few days we would give him children's Tylenol every 3-4 hours. We gradually tapered it off to every 6 hours and then every 8 hours. For two or three days post surgery his poop was black. Apparently this is normal because that's what happens when the body gets rid of all the meds they pumped in him. For two weeks following the surgery he had this bump on his tummy right where they did the surgery....it became hard and kind of stuck out. During his post op visit to his surgeon Dr. Soutter told us this was totally normal and it tissue buildup - or something along those lines, and that it will go away. 

Now that it has been over a month since his surgery, Caspian is doing fantastic. He has completely stopped projectile vomiting (he may occasionally spit up here and there, but no vomiting). He also doesn't have a scar on his tummy, and you can hardly tell looking at his belly button that he had surgery there. 

He is now a happy baby who sleeps through the night and smiles a lot.