The Two Weeks That Made My Hair Start Turning Grey – Part 2

After getting home from being in Le Bonheur for 4 days we were completely exhausted. The pictures of him laying with our dog, Maddox, and going on a walk with us in my previous post were art of the “honeymoon” phase that lasted all of 8 hours. Parks had to be fed 2 oz of formula every 3 hours but because it took him so long to take each bottle it felt like we were feeding him every two hours. Hence, we still weren’t getting any sleep whatsoever at all and Parks was miserable. We eventually increased the formula and within a few days he was up to his normal 3 oz every 3 hours. However, it was taking a full hour to feed him and we had to burp him between every ounce of formula.

Parks during his second trip to the ER.

Even though he had just had surgery to fix his Pyloric Stenosis the little guy was still spitting up (not throwing up) more than we thought he should. Every time we burped him he screamed as if he was in pain. We didn’t know if this was from the surgery or if something else was wrong. He seemed fussy all the time and just did not seep happy at all.

We came home from Le Bonheur on a Friday morning and on Thursday of the next week at 10 pm I went to change Parks’ diaper before putting him to bed. Not to be graphic but I easily saw blood in his diaper and was immediately worried this was a result of something that had gone wrong with the surgery. We called the pediatrician’s office and received the nurse on call who instructed us to go back to the ER at Le Bonheur.

Our pediatrician again called ahead so we wouldn’t have to wait long but unfortunately the ER was packed as we arrived around 11 pm that night. The first time we went there was hardly anybody there and they took us right back. As Parks had just had surgery a few days before they got him back pretty quick but we still had to wait awhile. Sitting in that waiting room I saw families from all over and their children had everything from what seemed like the flu to hurt arms and legs. Every parent in that waiting room looked exhausted and I’m sure when they looked into my face they saw the same.

We got back into our ER room and they immediately tested Parks’ stool and sure enough there was blood in it. They ran more tests, some tests, additional tests, we waited, waited some more and at 4:45 am they finally moved us up to a room on the 12^th floor of Le Bonheur. I wish I could give more details on our time in the ER but we were there from 11 pm to 4:45 am and I was doing all I could to stay awake. Parks received a new IV (it luckily didn’t take 5 sticks this time) and we were told we would see a GI doctor in the morning.

Shortly after arriving on the 12^th floor we noticed a big difference from our first hospital stay. The 12^th floor was the GI floor and had children of all ages on it. Parks’ hospital crib was much bigger and was not elevated with a set place for him to sleep as the crib on the 8^th floor provided. There were no rockers, mobiles, or swings for him and when we requested formula to feed him they had to go down to the 8^th floor (the infant floor) to get it. However, this is no normal hospital, and the next day when we requested to be moved to the 8^th floor, they moved us. One of Lynley’s friends told us we could request this and thought it was awkward and the Hospitalist pushed back a little we ended up getting our way. I try to be a nice guy most of the time but when it comes to my kid and the fact that I’d had no sleep I’ll admit I was a push jerk plenty of times during this hospital stay.

Early the next morning the Hospitalist’s main concern was not the blood in Parks’ stool but the fact that he had not gained any weight since his surgery. She believed the bleeding to be a result of a protein allergy and we were switched back to Nutramigen (the hash brown smelling formula) and she told us we could not leave the hospital until Parks started gaining weight.

To be honest I was now more scared then I was when he had the surgery. He has a surgery and they fix the problem but now we didn’t know what the real problem was so they began running tests. They conducted another ultrasound to check his stomach and all looked good. They did blood tests and all was normal. Test after test after test was run and they all came back normal. Why wasn’t my son gaining weight?

Our Hospitalist then requested we see a speech pathologist for a swallow study. My first thought was, “Our son can’t talk so why does he need to see a speech pathologist?”

However, the speech pathologist is the one that would end up being Parks’ hero and finding out what was wrong with him. Well, the two things wrong with him. Speech Pathologists now hold a special place in my mind and I am sincerely grateful for what they do.

By studying the shape of his mouth and the way he latched with his tongue we learned we were using the worst possible bottle and nipple specifically for our son. Dr. Brown makes an awesome bottle and nipple but for Parks they just weren’t the right shape or size. We were told to switch to a Nuk bottles with a fast flow nipple.

The speech pathologist then conducted a barium swallow study where she watched Parks swallow with a Radiologist in a huge imaging machine. We found out quite a bit of what Parks’ swallowed was going in his windpipe causing him to aspirate. The way you fix this problem is by thickening the formula to a consistency of honey. So now not only do we have hash brown smelling formula we have to add powder to make it thick (and impossible to clean off surfaces).

To make one of these bottles took about 10 minutes at first. The powder was clumpy and had to be shaken for 5 minutes. Sometimes it was so clumpy it would clog the nipple hole and we would have to wash the nipple or switch the nipple 3 to 4 times during a feeding. However, Parks was keeping it down so we just went with it. After 2 days of making bottles this way it finally hit me, “ If I could just use a blender and liquefy this stuff it wouldn’t clog!”

The nurses and doctors were skeptical but after speaking with the speech pathologist and dietician they told me this was completely acceptable when making thickened formula in book. So now, every night I throw formula, water, and 8 packs of thickening powder into our Ninja Blender and let it rip. We make bottles for the next 24 hours every night so all we have to do is take the bottle out of the refrigerator and warm it.

Even with the clogged nipples Parks’ feeding times started declining quickly. I mentioned at the beginning of the blog that it took him over an hour to take a bottle. We found out at the hospital he was actually burning more calories than he was taking in by taking so long to eat. He was supposed to be able to take 3 oz in under 20 minutes. It took him a bottle or two to get used to the new nipple but after he did he took a bottle in 15 minutes, then 12 minutes, then 8 minutes, and then 4 minutes. We were told that the 4 minutes was too fast and we needed to stop and burp him several times between ounces to slow him down. This was all within 24 hours of the swallow study so I’m giving my thanks again to the Speech Pathologist!

After 4 days in the hospital Parks’ finally got the ok to go home. We got the word that Saturday that he would go home on Sunday and Parks’ grandfather (my father-in-law) got back from his fishing trip in Alaska just in time to come see us late that afternoon. Our hospital room was pretty full with people that day and I was just plain exhausted after only getting an hour or two of sleep each night. Therefore, I made the 20 minute drive home to let Maddox (our dog) out and take him on a walk as he hadn’t seen us in a few days and Parks had become his buddy as well. However, we never made it on that walk as I crashed on the couch for about an hour before heading back to the hospital (Maddox laid beside me the whole time). That may have been the best one-hour nap of my life!

Dad and Parks home from the hospital for the second time!

I’m happy to report now, about 6 weeks later, that Parks is now taking seven 4 oz bottles a day and is gaining weight like crazy. We even get to skip the 3 am feeding…WHOOO HOOO! The last time the doctor weighed him he was over 12 lbs and judging by our home scale which is not as accurate he is now close to 13 lbs and difficult to pick up out of a bathtub. We go back for another swallow study in November and hopefully we will get to go back to just normal formula until 6 months and then start introducing him to solid foods. To all of you who prayed for Parks and kept us in your thoughts we are sincerely grateful! My next few blog posts will get back to normal dad stuff!