- April 24th born 6pounds 12oz
- Was up to 7pounds then the vomiting started about 3 weeks ago approximately 2 to 7 projectile vomits a day
- A month after delivery he should be 8 to 10 pounds.
- 3:00pm Thursday May 31st 6pounds 7oz
- 7:00pm Thursday May 31st 6 pounds 4oz
- before surgery June 1st IV fluids for 12hrs gained again to 6pounds 7oz
- 1:00am Saturday June 2nd 6pounds 15oz (excited) IV Fluids and Formula, still vomiting
- 5:30pm Saturday June 2nd taken off IV hoping his body by itself can gain weight, still vomiting
- 11:00pm Saturday June 2nd 6pounds 11oz
- 10:am Sunday June 3rd 6pounds 9oz
- Told until he starts gaining weight we will remain at the hospital.
This post might not be the easiest to read, since I am writing this while being at the hospital with nurses and doctors coming in our room every 20 minutes checking on James. My lack of sleep (3 hours at most a night) combine with sleeping on an uncomfortable hospital sofa obviously and stressed doesn’t make me function with grace. Add my dyslexia which makes my writing hard to read on the best of days will make grammar police cringe reading anything I write today.
Our sons James projectile vomiting mayhem started 3 weeks ago. I knew this wasn’t normal as others kept on advising me “this is just what babies do, they vomit and spit up” or “he is sensitive to the formula or your breast milk try another formula until you find one that works” which I knew wasn’t the case. His vomit was different 1) very projectile 2) large volume. This tiny new born was vomiting volumes of an adult. This wasn’t the simple burp spit up common to babies but he could have been a cast member for the Barf-O-Rama Pie Contest scene in the movie Stand By Me.
3 weeks ago the vomiting started, that Friday I had an appointment at the hospital to talk about lactation and formulas. By this time I was stressed all over the vomiting, confused what is causing it, I tried three formulas and in front of the nurse when she gave me super gentle formula saying this should be fine, he vomited again and she suggested a different brand of formulas I needed to buy, that discourages spit up with added rice to thicken it, stating since he probably has a bit of acid reflex this one will work.
We tried the formula she suggested but the vomiting persisted . Back to the store to buy more formulas, trying almost every formula on the market. Monday morning I called the pediatrician in desperation who saw us first thing.
She observed James, I told her the symptoms, she weighed him and told me she is sending us to the ER and explained he might need immediate surgery asking if I would like her to call my husband or would I like to tell him. While the doctor was arranging everything at the ER for my arrival over the phone. I gathered my thoughts wiping away tears thinking “why this after I had a hard year for medical issues, painful pregnancy, brutal delivery does our son now have to suffer it isn’t fair to him”.
At the ER they were waiting for James outside, having a parking attendant park my car and rush me in. After an ultrasounds, blood work and a lot of waiting around they sent me home saying he is just fine and puzzled why I was even there look and questioning me, much like as if they were accusing me of Munchausen Syndrome by Proxy.
My pediatrician called me when I left the hospital asking me to rush to her office before it closes to pick up yet another formula which should not get him to vomit through the weekend and will call me Saturday and Sunday and see me Monday morning to weigh him again. Every time she called I explained her he vomited. Nothing changed with this miracle formula, the vomiting just got worse, having for more trips to the doctors ruling out always what I was originally sent to the ER for since they claimed he was just fine and didn’t need surgery. The doctor was just as puzzled as we were
The doctor racking her brain we were told we were feeding him too much and other times told we were feeding him too little. We were told we were not burping him enough. I was told I probably think he is vomiting large volumes because it might look like a lot but he is probably not vomiting as much as I think. I got edgy and frustrated feeling no one believes again feeling I am getting cornered into Munchausen Syndrome by Proxy and almost enjoyed when he vomited on others because they finally saw what I saw and took me seriously. But later would I discover if he just vomited in the ER we wouldn’t have gone on 2 weeks more without the right help and little James suffering malnourishment and dyhrdation.
Anyone who saw him vomit defiantly was shocked at the volume. Our pediatrician stayed on top of it but ruled out the original diagnose over and over since the ER tests were negative. She saw me break down in tears a few times and taught my husband and I to pretend vomiting part is normal, only to hold ourselves together emotionally for ourselves and for our son while they try to figure it out. While we watch James get skinnier every day to the points I feared burping him without padding his back with several blankets since he was so boney. As things progressed he would have one to one to two diapers at most a day. His soft spot on his head sunk in, his eyes looked gaunt. No matter what we fed him he vomiting more and more every day.
As most of you know I didn’t tell many people about our trouble. This included my parents and best friends. I am sorry for this but it was the only way I could cope and hold myself together for James and myself. Outside of Robbie my husband, Doctors and I approximately only three people knew. I admit I cried a lot when people weren’t looking, Robbie and I lived in a stream of vomit, and piles of laundry as he vomited on beds, clothing, baby blankets and bassinets around the clock. To feel normal I would look at others peoples Facebook walls or blogs to escape for a bit to keep strong and be positive – again would like to thank everyone who is my friends on facebook. One night I admit I was so tired, and James vomited in three beds at this point, the third bed I just didn’t have the energy to put the sheets in the hamper for a third time so put down some towels over the vomit and slept on it.
Doctors encouraged us to feed him more no matter how much he vomits to stop his declining weight. Which we did and were proud how good we did, charting a detailed excel sheet, but at weigh in at the doctors his weight declined more which was puzzling and told us what of course no parent wants to hear “they have to admit him to the hospital and they are waiting for us”.
Showing up at the hospital James vomit in front of the nurse less than 20 minutes after getting admitted. When she saw the volume said “is this how much he always vomits in shock?” which I replied “up” she replied “the doctors needed to see this”. Did the doctor after seeing the volume of vomit decided not to wait to the morning and send him for tests immediately and within a hour had him scheduled to have surgery the next day. Diagnosing which the ER argued he didn’t have Pyloric Stenosis.
Here are two links to learn about Pyloric Stenosis
Link 1 Pyloric Stenosis
Link 2 Pyloric Stenosis
The scary thing, the operation relatively easy has only been around for 34years prior to that the babies would just die. [ Update a person commented below who had the surgery 45 years ago, so the surgeon who told us facts about it only being 34 years old wasn’t accurate ]
James operation a pyloromyotomy done through laparoscopy went smoothly. He has three cuts you can see on the photo one on each side and one on through his belly. He did vomit a lot the night after the surgery but we were warned he would as his stomach was pretty stretched and needs shrink and to learn to coordinate itself pushing food down the intestines versus vomiting. We could have gone home the next day but he was so malnourished and dehydrated from him getting almost no food in his intestines for couple weeks (I am pretty upset at the ER) from Plyoric Stenosis getting miss diagnosed from the ER doctors. They now we are trying get James to gain weight. He did gain weight with an IV however when they took off the IV to see if he holds his weight he lost weight. Until James starts gaining weight they will not send us home. All of Saturday and most of Sunday he could only drink 20ml of formula every 2 hours, before he started to vomit and his weight declined more. However late Sunday night he started to drink 60ml every 2 to 3 hours and hasn’t vomited. We are keeping our fingers crossed.
I stay at the hospital 24/7 and Robbie joins us after work or during the day. For the evening he goes home to sleep, feed the animals and work. I don’t really know many people in OC which is a bummer because sometimes I wish James and I had some visitors while we are held captive at the hospital waiting for him to gain weight.
We are optimistic and hope to go home soon, time will tell.
Here are some more pictures from our time here so far.