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?

Week 22...Too much news!

So, I have been putting off posting until things calm down a bit. I know people look for inspiration through others blogs and I didn't want to post until I was a bit more rational and optimistic about everything.

Week 22...Not so much good news!

This week started out ok, aside from Ayden not taking enough of his bottles.Ayden is still on tpn and has lots of IV nutrition to supplement his feeds so I was not too concerned. He was eating around 40ccs every 4 hours and wanted to sleep through his feeds though...

On Monday the Docs told me that if he didn't start eating a minimum of 65ccs every 4 hours that they would put an NG back down. The biggest problem with that is the fact that they are trying to transition him onto a formula and it is obvious that our little man doesnt cope well with changes. They have been transitioning him slowly (literally 1% at a time for the past 3 weeks or so) but have changed things numerous times. With starting and stopping feeds randomly I just can't figure out how they expect him to adjust so quickly. This week he is now up to 15% Progestimil to 85% Donor Breastmilk and he seems to be adjusting just fine.

On Tuesday he had his routine eye exam but some irregularities were found and 3 different doctors were sent up to examine him. After all was said and done they informed us that it seemed as though his Retinopothy was stable but the pressures in his eyes were off(early signs of glaucoma) and his left eye was developing a cataract...(All i could think about was how grateful I was that it was his left eye, as this is the eye they had informed us that had already lost nearly all vision)...I am so grateful that he may still have some sight in his right eye after everything he has went through!....We are crossing our fingers in hopes of never returning to Michigan again...only 1 more month until the retinopothy disease is complete!

On Wednesday I got a call from the Nurse Practitioner Resident who was calling to give me an update but ended up giving me more information than she was supposed to. After giving me the rundown of no changes being made and such she blurted out that there was talk of a "G-TUBE"...I couldn't grasp the idea of going from no feeding tube to a tube being surgically put in!...Ayden had only been taking 50ccs every 3 hours and they still hadn't put in an NG...to me this just seems like throwing the baby out with the bath water...Needless to say, I called and talked to a Neonatologist... the g-tube is still a possibility but lots of other things have to go wrong before that option is explored. But within the same conversation I was informed that they found out that Ayden's pancreas was not working correctly (aka: Pancreatic Insufficiency) and he would need to be given pancreatic enzymes. The enzymes come in a powder form and are given before each feeding with applesauce....Ayden just thought this was the best thing!....He is still working on changing up the tongue motions to get the applesauce down but that just gives him a bit more time to savour the flavor! We are crossing our fingers in hopes that the enzymes will help him digest and break down his food correctly and it will help him to gain weight without the tpn in time. Meanwhile, Ayden must have heard about the g-tube because he began eating 60-80ccs during his feeds!

Thursday was a very long day but no changes were made. Ayden took 80ccs at his 8am feed but was not as cooperative at his Noon feed. The speech therapist, who has been working with Ayden for the past month to find the perfect bottle and position combination for him, was only able to get him to take 30ccs before going to sleep. I am convinced he just likes so be ornery once a day with feeds because as soon as she put him back in the crib he woke right up and grinned at me...Like "ha lady...all I wanted was my mommy!".... he took about 70ccs each time after that.





We had a care conference today but did not find out as much as we had hoped...A general care plan wasn't even addressed. We had been told that we would come up with a step by step plan and be given a round about date for discharge but we were sadly disappointed...They just reiterated the same things that we had known for weeks....He has to be transitioned to a formula, get off the tpn, gain weight with just the formula, and have surgeries to repair his hernias and take out his broviac. Needless to say, we have at least another 2 months in the NICU for these very reasons....We asked if he would be out by the time of our wedding (June 5th) and they just said it may be reasonable..."MAY BE REASONABLE"?....He will be 10 months old on June 5th....They have jokingly mentioned kicking babies out of the NICU when they have teeth...@ 10 months old he may be borderline for that stipulation...Any hopes we had for him coming home within a reasonable time were just crushed!...It will take us a little while to cope with this idea...

So with all this bad news I had to take a couple days to relax at home. We decided not to stay at the Ronald McDonald house for a couple days...During this time I finally got the energy and courage to finish Ayden's Nursery...For the longest time I couldn't open the door or walk by the room without crying so finishing it was very emotional for me. We even put his walker, exersaucer, and swing together!...I took a picture of it and placed it in his crib for motivation(Ill post the pix on here in a later post)....Home is officially ready for him!...Now all we can do is wait until he is ready for home...

On a brighter note!...I am officially retiring ALL of Aydens preemie clothes!....Ayden now weighs 6lb 7oz!...He has gained 8oz within the past week!