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!