les miserables

Been home for a whole week. Our first adventures are none other than teething and introducing rice cereal.

Feeds have been a struggle overall. Feeding him every three hours at a higher volume = grumpy Sawyer. He cried for two days straight. His speech therapist suggested feeding him when he acted hungry, which is about every 4 hours, and let him experience hunger and satiation. I have been really conservative with his volume, where he was at 105 mL for a long time, 120 mL is the max. Any more (we were giving 137 mL) and he wails and moans and screams at deafening pitches. But since I made the decision to feed him less frequently, he has been able to sleep and is literally all smiles, again. The therapist started rice cereal and he did ok with that. He will nibble and bite the nipple of a bottle, sometimes swallow, sometimes cough, and then keep chewing, but he isn't aggressively sucking and swallowing.

He has one tooth cutting through on the bottom. Maybe one on the top, but the bottom one is very prominent. Add that to the belly ache and he is one miserable little dude. Baby Orajel to the rescue.

We work on tummy time using pillows so he is raised slightly and so there isn't as much pressure on his g-tube. He is getting stronger everyday. His favorite thing to do is stand and bend and jump, even though it feels like his shoulders are going to come out of their sockets from holding him with his arms above his head. He loves it. The bumbo pictures are from the first day we got it. Just after a few days though, he can sit up pretty well and watch TV so I can run to the other room for quick spurts here and there. I use the Jump Up when I'm trying to tidy the house up, so he can see me walk from room to room. Last night he sat in it for nearly an hour before he started to get tired. Most importantly, he is shedding in copious amounts. He has bald spots in the oddest places. If his hair isn't combed forward from the back, he is basically bald on top. poor guy.



We are going to bless him Sunday, July 3 in a new ward that we have never been to. The luncheon afterward will be at our house since all of his stuff is here (pump, my pump, diapers, wet wipes, g-tube materials, etc), so I will be busy this week making our house presentable for company. Last week was a hectic week, but I'll try to be a better blogger this week. If not, I'll buy you a diet coke.

the first 48 hours

After I finally went to bed Thursday night, I was back up within the hour to start his 12:00 am feed. Every noise he made warranted a jolt from bed to make sure he wasn't choking on his secretions. He slept the entire night and Taylor and I slept for maybe three or four hours, maybe. The next morning he was all smiles. My eyes felt like they were burning into my skull, but sleep was the last thing on my list of priorities.

We made our follow-up appointment in good time. Dr. McInturff is great. I felt like we were on the same page, as though he had been at Primary's with us and knew our story. He gave us the go-ahead to alter his feedings so that he can go for a 6 hour stretch during the night so Taylor and I can sleep. We tried it last night and it worked like a charm.

Taylor's sister and brother-in-law brought over dinner, cookies, and baby clothes. Later Taylor's mom visited as well. And I did the unthinkable and went to see my nieces and sister in the production Annie without a baby in tow. Taylor convinced me that they would be fine without me. Glad I went, more so knowing that he slept the entire time. I rushed home to a sleeping baby, so I succumbed to the exhaustion and crashed. We all slept through the night and started over at 6:00 am to a smiling, happy baby patiently waiting to be fed.

That's not to say he doesn't throw fits. Cuz he does. It definitely takes an army of two to get his pump set up, meds measured and administered, binkie held in his mouth, and milk measured and warmed up every three hours. We figured out a system real fast. Our dogs just stare as we do our awkward tango in the corner of Sawyer's room all day long.

So next on our agenda is to get another weight this coming Friday, a week from his appointment, to see if he is losing, gaining, or maintaining. I haven't made any arrangements with the speech therapist yet, but will this coming week. And still need to call surgery to see if they need to check his g-tube or if that can be done here. But for tomorrow, we are just going to relax and celebrate our fathers and eat chocolate and drink diet coke. (Milk supply is amazing, just sayin').  

a very appropriate nursery rhyme

Horsey Horsey on your way

We've been gone for many a day

So let your tail go swoosh

And your wheels go 'round

Giddyup! We're homeward bound

WOWEEE what a day.

I should be in bed, but I'm still running on the adrenaline that has accumulated over the past few weeks. Discharge went very smoothly. I think I was expecting more leg work on our end, but not so. We rolled out around 1:00 pm. By the time we approached Bountiful, Sawyer was fast asleep. He slept for a good hour and then it was time to eat. We pulled over somewhere near Malad and fed him slowly with a syringe. He fell asleep again for 20 mins and suddenly we were home!

For his six and nine o'clock feeds we used the Kangaroo pump and finally he fell asleep while I rocked him and Taylor put his crib together. He looks like a tiny baby in it, but I don't mind one bit ;)

We had dinner at my brother's. Sawyer loved all the interaction. It was all very surreal to have Sawyer with me- I had to keep reminding myself that I needed to pay attention to that tiny detail instead of always wandering off to the kitchen looking for some grub.

It's been a great day and we are happy to be home. I miss everyone already. Thanks a million to my NICU family for everything, start to finish. I will always keep this time in my life very dear to my heart.

We're going home!

Hopefully we can go home this Tuesday. I have a lot to do, so I better go. Car seat test tonight...as long as I can trust the nurses* don't take off with my baby.






*Brooke Norton, RN and/or Becky Smith, RN

I have my baby back!

After five days of the annoying breathing tube, Sawyer was finally taken off last night. It went really well. We knew it was time because he gave Taylor a few huge smiles and tooted a few times. We both skipped dinner on accident, so by the time Sawyer was comfortably asleep sans the ventilator, we snuck out and grabbed yummy fast food on the way home. I slept for a few hours, and jumped out of bed at 6:00 am to hurry to the hospital because I have missed my baby boy. He is on a high-flow nasal cannula (oxygen) for backup. He should be off of it by tonight. He sounds like a lamb when he cries. Just a hit of morphine  and Adavan (sp) calms him down. He is currently playing with his mobile toy and chewing on his fingers. Grandpa should be here soon. Yay!