Sunday, May 10, 2009

My Happy Mothers Day

Last Mothers Day was my very first, and I spent it sitting alone in the NICU with my boys. The nurses gave me a card from the boys with their footprints in it and a candle each. It was so sweet, but still it wasn't the way I had ever thought of my first Mothers Day happy to have it as I was. But this year is way better.

This has been such a beautiful weekend that I never want it to end. The clouds have parted after almost six days of heavy rain and we've had breezy, windy, very warm to cool sunny days since. And it's been a busy weekend. Friday we dropped off some baby clothes and a baby shower gift with friends we haven't seen in too long of a time, so that they could pass them on to our good friends K&M in PA. We're so sorry we're missing the celebration of their baby boy-to-be but our thoughts and wishes are with them. Then Saturday we visited with Mommom and Poppop and had a great time. It was so nice to sit and chat and let the boys get to know them a little bit more. We didn't get to see our cousins, and missed seeing them but maybe next time.

When we got home from Mommom and Poppop's there was a big wind storm that blew through and almost wrecked our large gazeebo against the side of the house. It nearly took out our new family of little baby birds that have nested on the side of the house where our clothes line is attached. Luckily Momma Bird and her three hungry little baby birds are all okay. But it was like something out of the Wizard of Oz. I was kneeling over Evan on the bathroom floor having just dressed him after a bath and looked up out the open window to see this huge gazebo canopy flying through the air and coming straight at us. Nothing is broken, the fabric a little torn, and our patio lights need to be restrung anyway, but it was a scary experience from my angle and I'm sure from Momma Bird's angle.

That night we increased Evan's feeding pump volume an additional two milliliters per hour for a total of 39mls/hr. He slept pretty well except for the three instances where he started heaving in his sleep. This is the first time this has happened since we had the tubes adjusted over a week and a half ago. Since I still have ineradicably strong Mom-dar that never turns off I naturally don't sleep and heard him start his heaving and was able to get to him before anything bad happened. Each time he had a heaving attack in his sleep he did not throw up any fluids which is a good thing.

Cameron is now sleeping pretty solidly through to 4am most nights, with the occasional fussiness for a paci or that he can't get comfortable because it's warm on the second floor of our house. Evan is almost there to sleeping solidly like Cameron, but still wakes up from time to time with screaming fits for his paci and some cuddling. But then once we've got them to sleep solidly through to 4am the problem is how to get them to sleep past 4am to 6am? For their entire lives we've always had to get them up at 5:30am for medicine before Daddy had to leave for work. It's gradually moved to 5am, 4:30am, now 4am and sometimes Evan is up at 3am chatting away ready to play. *sigh*

Today, Sunday, we had another even more beautiful day and a wonderful surprise. Our GI had told us to try hooking their feeding pumps up to their G tube port to see how they tolerated the formula in their stomachs. We have been skeptical that this would work, in fact we told her that the boys still often vomited about two times a day minimum, just not as badly as it had been before the tubes were adjusted. We were thinking that their stomachs have shrunk a fair bit and they would be heaving and vomiting like they used to, that they would be in lots of pain from the constant reflux. If that was the case we would put them back to feeding them through the intestines and try again another time.

Today we took them off their feeding pump at 9am as usual for their four hour break. They ate stage two macaroni and cheese, blueberries and their latest craving of water. Yes, they love love love water. We spoon it in like soup and they are crazy for it. (Thanks to Sweater and her OT's suggestions!!) And because of doing this the other day I was drinking a glass of water and Evan pulled the glass towards him, opened his mouth and put the rim of the glass in. I let some water touch his lips and he got very excited. He would not stop and would not let me drink the water myself. I let him try several times and really all that happens is the water pours in his mouth and falls right back out down the front of his shirt. But the bottom line here is that he WANTS to put something to eat or drink in his mouth!

In feeding them their spoonfuls of water today I decided to see what they would do if I presented them with 4oz bottles with a little water in them. The boys have not had a bottle presented to them in over three months because they would gag, heave, vomit, scream, kick, arch their backs and cry at the mere sight of the bottle. If you touched the nipple to their lips it was an automatic gag reflex and they would vomit everything they had in their stomachs.

Well lo and behold, the bottles were a big hit. They picked them up, shook them about like rattles, turned them upside down oblivious to the water dripping onto their laps, and then the miracle happened....

Cameron put the bottle in his mouth and started to try to drink the water! He couldn't get it up high enough (he'd never wanted to hold the bottle before so he has no idea that he needs to hold it up high) so my mother held it at the right angle and Cameron chugged that bottle of water like it was BEER! I got so excited that I grabbed the can of Good Start and poured a scoop of formula in to his bottle and shook it up. I gave him back the bottle and he started drinking it too! It didn't phase him at all to have that bottle in his mouth and he hadn't forgotten at all how to suck and swallow and breathe!

Here's a quick video I caught just before he'd decided he'd had enough.

Poor Evan had just had a bad burp which caused a gag reflex and he threw up all his lunch (he ate barely and ounce but it's something) and so he was not in a good mood after that to do more than shake his bottle around. If I put the bottle to his lips he got very upset and started to gag again. That's okay. He wasn't freaked out by the sight of the bottle anymore so I'm really excited and plan on giving him another bottle of formula every day.

After lunch we plugged the feeding pumps into their G tube ports so the formula would slowly pump into their stomachs. And then as planned we went to a couple of different garden nurseries to search for hanging flowers and a couple of trees to plant. It was beautiful warm but not hot, windy enough to be cooling, and super pretty out. Then we drove around for a while to let the boys nap in the car. We grilled out on the deck, played with the boys on the swing, and then put them to bed. It is now 8pm and neither baby has heaved or vomited because of the formula continuously, and slowly, pumping into their stomachs.

The true test will be over night, especially for Evan. If we continue to have this work through the week, by next week we will go in to our GI doctor's office and she will take out the GJ tubes and put in standard G tubes with a low profile McKey Button port.

I had thought all hope for bottles and sippy cups was lost. That we had a much harder road to eating solids. All the therapists said that we would never be able to use normal sippy cups and we could pack up our bottles all together. They had said not to expect the boys to eat stage two solids for a long, long time.
But today my hope is renewed. It's been a wonderful Mothers Day.

Some pictures from this week:

Daddy teaching Evan how to play World of War Craft

Evan chillin' with Granny Cathy on the swing

Cameron laughing at Daddy

Thank you K for the awesome outfits! We now fit and love them all!