Week 27...Hearing tests & an angry boy

So this week has been hectic to say the least. I know it seems as though all I ever have is bad news but really we never get any good. His surgery has been rescheduled 3 different times already. If no further changes are made, he will be going to surgery at 9am on Monday. Aside from surgery plans and upping his calories from 20 to 23, this week there were not any changes made in his care. He is still on Progestimil and hating every second of it. Ayden throws tantrums during nearly every feed and takes less than half of what he is supposed to. He has been steadily gaining weight and so his minimum intake expectation is now 85ccs every 4 hours. The last couple days he will have a good feed and eat 50ccs one feed and then eat only 30ccs the next feed. I think he just likes keeping us on our toes! Today they mentioned finding a similar formula that tastes better or to find a flavoring to put inside of the formula itself. We will see how that search goes within the next couple of days.

The enzymes are still giving Ayden's bottom issues and none of the creams they have been using have been helping. The doctors said they are going to search for a different type of ointment for that as well. Meanwhile, Ayden is now up to 7lb 8oz & is 19.75 inches long...He is just looking so big now!

Last week I mentioned that they had had some issues with Ayden's hearing tests and we were a bit clueless as to what was going on. Well, yesterday they did another screening and they came back to say that he had moderate hearing loss and he will be examined by a doctor. If the next test comes back the same he will be fitted for hearing aids before going home. All of the nurses say that unless the baby is calm and quiet that the test results are not very accurate. During his test Ayden threw a tantrum, threw up profusely, held his breath and bradied for the first time in months. They will be doing another test after his surgery on Monday while he is still sedated. After that exam we should know more about what to expect for his hearing.

Yesterday was probably one of the the worst days Ayden has had in a while. He threw up his entire feed three different times yesterday and over 100ccs of air was drawn off his stomach numerous times. Late last night they ordered a belly x-ray and said that he just had a lot of air in his belly. My question is...how does a baby his size get that much air in his belly? He gets less than 3 oz of formula every 4 hours & 4oz of air is being drawn off of his stomach in between feeds. There is something going on that they are not finding!

So Ayden turned 6 months old on the 5th and I completely didn't mention it in my last post. I did take some photos of him on his big day and I will post them later! I can not believe it has been a half a year since my precious man came into this world!

Wish us luck for Monday! Next week is a big week for our lil man!

Ayden is such a trooper!

There is never a dull day with Ayden. Poor boy can never catch a break....

In my previous post I had mentioned how much Ayden loved his applesauce. Well, the next night his nurse gave him pears (technically he wasn't allowed to be given this) but didn't seem to be as big of a fan as he had been with applesauce. This nurse also evidently didn't know how to correctly give enzymes either... (which I would think was a common sense type of duty considering the nature of the enzymes all together) ... So this nurse only got 2 spoonfuls of pears to give him and just sprinkled the enzyme powder on top of the spoons. Doing which of course defeats the purpose of the applesauce/pears all together because the inside of the mouth is having direct contact with the enzyme without any kind of additional coating. I watched her do this the 1st time and said something about it but she just told me that she knew what she was doing and it was ok. This was a night shift nurse and so we went home about an hour after this feeding... So 10 hours later when another nurse came on (who knew how to give enzymes correctly) and fed him he seemed less than enthusiastic about a bottle but managed to take 60ccs with a struggle...the same happened at his next feeding...

By the time his 4'o'clock feed came around he refused to wake up at first, didn't wake up during his diaper change even, but screamed when trying to start his feed...After giving him the first bite of applesauce&enzymes he began spitting out blood. It continually bled for about 30 minutes even with placing gauze at the site. An NG was placed, he wasn't allowed to take a bottle for a couple days ,he was given tylenol, and the enzymes were stopped. Soon we started seeing open sores on his bottom as well, evidently the enzymes had came out through his stool and had caused breakdown of his skin there as well. So he was in pain and was so irritated that he kind of shut down at that point instead of crying. He slept for 8 hours without even waking up for his diaper changes or assessments as they put his feeds down the NG. Somehow he managed to putt his NG out 2 times this night tho!

Saturday the doctors decided to take him off of his TPN/IV nutrition because they thought he was gaining enough weight. This is a bit frustrating because the only reason he was gaining weight was because of his tpn. His tpn was turned off @5pm. So at this point I know he is going to lose or at least not gain. So, I still cant wrap my brain around why you would stop the tpn of a baby who has a history of weight issues, who has a pancreas that doesn't work correctly, & of which you just stopped the enzymes that are supposed to help with that. When they weighed him at 8pm he had gained since the day before and had finally reached the 3000 gram mark...he weighed 3014 grams. Later that night they attempted to give him a chance to take a bottle but would quickly take 25-30ccs in about 2-3 minutes and then he would stop and fall asleep. He continued to do this until his 12'o'clock feed on Sunday where he took 65ccs. At 4'o'clock they started the enzymes back up with his feeds too. Sunday they also realized that the skin under Ayden's neck had began to break down & sluff off and was very irritated. And they started him with some powder under his neck...he really doesn't like that process! When they weighed him Sunday night he had went down to 2964 grams. Within one day of being off of tpn he had lost 50 grams already! Hopefully they realize what the issue is b/c he is definitely one baby who cant afford to lose weight. With weight loss comes temp issues again and then we would be in that never ending circle we were in in December. I hope these doctors get this under control fast!

This process never seems to get easier.

So on a brighter note...the physical therapist said that Ayden wasn't showing any signs of the spastic type of cerebral palsy and there is no tightening of the muscles yet. Another nurse had said he had shown early signs of it when he gets angry and arches his back or straightens his arms and legs as he is screaming. I never thought this was abnormal. Don't nearly all baby's do that when they are mad?...Anyways, I was happy to hear the good news from the PT!

I know I promised a picture of my lil' man's room so here it is!....

What do you think?