Thursday, November 19, 2009

8 weeks and my how we've changed!

It is getting harder and harder to keep updated! We are able to do so much more with the babies and we want to spend every second we can with them - even if it means changing a poopy diaper! Nich and I did manage to sneak a chance to go on a date - dinner AND a movie! Our kids have been rockstars this week! I went back to work today and really needed them to have a good couple days! It was so hard to leave them last night, knowing I wouldn't get to see them today, but once I got back to work it was just like old times! I called and got an update on them on my way to work, got an update from Nich and noon and 3pm to help me get through the day. I miss them, but know they're in good hands! Hailey and I got to have MUCH needed Mommy-Hailey time :) We went out to one of her favorite restaurants, McDonalds (I know I wasn't thrilled, but really felt like spoiling her!) and shared a meal. Literally, shared her chicken nuggets and apple dippers and my chicken wrap and fries. She's so precious, every couple minutes she would wrap her arms around my neck and pull me close. I LOVE this child! :) After dinner we played "Hailey and Mommy," where we switch roles and she takes care of me, i.e. Hailey. She even got toys out for me to play with while she picked up her clothes to vacuum her room! Tomorrow after work we'll head back to the Ronald McDonald house, our home away from home!

November is National Prematurity Awareness Month, and March of Dimes gave gift bags to each preemie family in the NICU yesterday. It had beanie babies, onesies and a preemie specific baby book. The outfits are preemie size but still are way to big! Here are the babies' new friends - the bear is for Brennan (he's so cuddley!), multi-colored jackel is for Landon (he changes colors when he's upset and is such a wild man!) and an inchworm for Brooklyn (she scoots all over her bed, and arches her back, moving like a worm).

Brennan Nicholas 2lb 3oz (birth weight 1lb 4oz)

Brennan is still doing great, gaining weight and breathing! He's now trialing nasal canulas for 6 hrs at a time, then 6 hrs on CPAP. Working his way there! He was so active last night, it was hard to get a good picture! Video hopefully coming soon, it was just way to large to load (gotta work my technology magic!) He is steadily increasing his feeds and on fortified breast milk (26 calories every feeding/every 3hrs). His skin looks so much better and they're really starting to fill out and look more and more like babies! It seems Brennan may have a metabolic disorder called Biotinidase deficiency, this was found yesterday after 2 abnormal newborn screening tests. Check this link for more information. It is not confirmed since he is so young and had many blood transfusions, but to help diagnose, Nich and I had to have the same blood test to see if we are carriers of this. If he does have this, it seems he may only have a mild case which can be treated with Free Biotin supplements daily. He is being followed by experts at Detroit Medical Center as well, where the treatment was initially researched and developed. We should find out the results before Thanksgiving and will keep everyone posted. Brennan also started physical therapy on Wednesday! He will only get PT while he's on the CPAP so he doesn't tire out, but he seemed to do great! They are strengthening his arms and legs by putting him on his belly on a pillow and strapping him in his snuggly. This way he has to work his muscles to fight against the straps to move. He seems to be doing really good! We've had a couple desats (when his oxygen saturation dips below an acceptable level, below 81%) and bradycardias (low heart rate), but recovers really well on his own. He has his occassional big poop, that throws him into desats and bradying, but all in all he's pretty stable! We're thrilled!

Landon cuddling with his toy and sucking on his pacifier! We had to cut a part out so it would fit around his vent tube.

Landon James 2lbs 15oz (birth weight 1lb 7oz)

Big boy Landon! He has officially graduated into big boy diapers! That's size Preemie, rather than Preemie XS. I was so shocked when we checked his weight this week! He really is almost 3 lbs! He has had a better week, after getting over pnemonia, the surgery to place the resevoir and aspirating his food into his lungs. This last episode did get him a shiny new breathing tube! He is also sprinting to see if he can be extubated (removing breathing tube) and moved to CPAP like his siblings. He's had 2 trials and done well. We'll see! Hopefully in the next day or so if he's ready! Occassionaly he gets mad or stretches really big and stops breathing for awhile (called apnea). We can tell he's doing this even before the ventilator picks it up because his face turns bright red/purple. He usually recovers on his own which is fantastic! He doesn't need to be stimulated to breathe again. Feeding wise, he is the front runner now! Their feeds are increased everyday as tolerated and Landon is up to 27cc every 3 hrs! That's about 1oz! No wonder he's gaining so much weight! :) Neurologically, there hasn't been any changes since last week. Neurosurgery says he's doing great and his head is healed enough for CPAP when he's ready. Daily the docs drain 5cc of fluid out of his reservoir and will continue unless it needs to be increased or if he's able to drain the fluid himself. Once he gets to 2 kilograms (about 4lbs) he is big enough for a shunt if he still needs help draining the fluid. We'll cross that bridge when we get there. We are so thankful for a ball of energy! I finally got a video of his eyes we've been talking so much about! He's bean-bagged for his own protection, so he's not moving all over like usual! :) Funny how they have such spunk already!

Brooklyn Danielle 2lb 3oz (birth weight 1lb 3.5oz)

Brooklyn is doing great as well! Last week she had some bouts of Tachycardia (gets it from her mom!) but doing much better now. She is also tolerating being held so much more! Nich boasts of holding her the longest, but I think she and I just worked her up to it! He held her for over 1 hr and the most she tolerated with me was 30min. She's just not the touchy/feely type I guess. I did put my hands on her while she was in her isolette just to get her used to touching more. She'll get there! She is doing well eating and breathing too! That's really their biggest job right now! She and Landon are getting 24 calories every 3 hrs. If she wasn't so active she'd keep on some weight! Her new trick is turning her head! She'll be looking to the left, like in her picture this week and all of a sudden she does a face plant, then moves it to the other side! I tried so hard to get a video of her this week turning her head but didn't have any luck. I sat there for 30 min with the camera ready, but turned to a nurse to tell her what I was doing and when we looked back she was already mid turn! She is so active, arching her back and scooting and turning her head. I can't explain how good it feels to watch them be so active! They have been lying in their isolettes for so long and to watch them move is thrilling! We really could just watch them all day long!

We just praise God for these good days! We almost don't know what to do with ourselves! :) Daily, we witness miracles as these three grow! We have met so many wonderful families and had many great opportunities to share our journey and our faith. This we are so thankful for. I heard a song on the radio yesterday by Everyday Sunday called "Hanging On" that was perfect for me. Reminds us that no matter what hurt we feel, remember He is God. We turn to Him for comfort during our tough times and give Him praises for the joy!


Angie B said...

Thanks for the update. Praying and thanking God for his provisions and plans :)

The Denby's said...

I received the following just this AM: "Life isn't about waiting for the storm to pass...It's about learning to dance in the rain!"
I knew immediately that it was what your family has been trying so well to teach us all. Thank you and love the update!!!


Love the new pics and that's great news on the weight gain for each of them. Glad to hear that all is well and you got some "mommy-Hailey" time as well. Keep us posted!!!

Liz said...

They are getting so big!!! Congrats to all of you on a great week for the babies, we'll keep praying!

Brooke said...

I'm so glad you commented on my blog and led me to yours. Your story is amazing and I look forward to following your little ones' progress!

Cary said...

heard you guys made the front page of the paper today. My mom is bringing me a copy. Can't wait to read it. Congratulations on all your successes. We mothers of multiples celebrate every small milestone like winning a marathon. Because in reality didn't we just run one?

LMM831 said...

Thank for the update and good luck being back at work! They are getting so big!

MoDLin said...

Isn't it a thrill to realize they need larger diapers? It's wonderful to see them growing so well.