2 weeks

Addie was 2 weeks old yesterday. She has endured more in her 15 days than I have in my 30 years. We prepared ourselves for the worst, and have been so fortunate with Addie's progress. We are still in the Cardiac ICU for a couple more days, but will hopefully be moved to the 8th floor soon. They want Addie to gain some weight before going upstairs. Hopefully by Saturday or Sunday we will be there. Scott went back to work yesterday, and I think it was tough for him to be away. We both feel like we are living 2 different lives. One at home with Ellie and the other up here at the hospital. Soon enough, we will be altogether. We are ready!

Oh happy day!

Yesterday and today have been really good days for our Sweet Adeline. She is making some really big strides, and we are getting close to moving up to the 8th floor if everything keeps going as planned. Addie is completely breathing on her own now. This was a huge step for her. She looks more and more like the baby I had on May 16th. The only thing she has on her face is the feeding tube. She is only on 3 medications, 2 times a day, and we are starting to try and bottle feed her. They have warned us that the feeding might take a while for her to get because she hasn't ever taken anything by mouth.

This is what we have been up to today:

Both Scott and I are getting in some good snuggles with our girl. It has been 1 week too long without holding her. Praise the Lord!

Thankful

On this Sunday, Scott and I have a ton to be thankful for. Our sweet baby had another good day yesterday, and Scott and I got to go home and stay the night at our house. My sweet Mom stayed up here with Addie last night while we played with Ellie and got some rest. It has been 72 hours since Addie's last SVT. This has been something that I have prayed hard about since SVT's and single ventricle kids are not a good combination. Overall, it has been a good couple of days. We are so thankful for those of you who pray for us, text us, come visit us, bring us food, and think about us. The support we have received has been overwhelming!

But as for me, I will always have hope; I will praise you more and more. Psalm 71:14

A better day.

Yesterday was a struggle.  Today not as much.  That's just how it goes with these kids.  That's what they keep telling us.  That's what we will have to become accustomed to.  Today was definitely an up day for Adeline though as she reached a couple of milestones in her journey.  She had the rest of her drains removed and most importantly, her breathing tube taken out.  The breathing tube was a big thing.  She still has an oxygen cannula (the little tubes that go into your nostrils) but is doing the breathing part on her own.  She fought hard to stay off the ventilator and not have to be re-intubated.  She won that battle.  Going on 36 hours since her last SVT.  Another battle she is winning.

This is the view from my current "office."

At random times during the day, it hits me.  Camille and I have been basically living in this hospital for going on 10 days.  Ellie hasn't seen her baby sister since day one of her life and won't for several more weeks if all goes well.  We have leaped, not stepped, from our normal world into one where normalcy is measured in cc's/hr, artieral pressures and blood gases.  Adeline's room is a space shared by us along with so many others with the common goal of getting Addie and us out of it quickly and safely as possible.  In the meantime we live in this alternate world.  All this while trying to maintain our normal one with so much help from so many great friends and family.  One day these worlds will unite and our family can feel more like a "normal" one. 

Baby steps

Today was not the greatest day. Scott and I are constantly reminded that this whole process is 2 steps forward, one step back. Addie had 3 SVT's (Supraventricular tachycardia)from 1-3am last night. Her heart rate didn't get as high as it has been before during these but it was still just as scary. In rounds this morning, they talked about trying to extubate her, pulling out her other chest tube, and getting her pain medicines pretty much completely off. After rounds, Addie had 3 more SVT episodes. So then it was decided that today would essentially be a day of rest for Addie. The doctors decided that they needed to get her SVT's under control before they extubated her. The victory for the day was that she got her other chest tube out and she stayed stable this afternoon. The step back was obviously the recurring SVT's. So our little fighter didn't overachieve today, but she did achieve so we will take that. We are focusing on the small victories, and trying not to let the steps back get us down. Tomorrow is another day and we know she is working hard.

Big day

It is crazy to think it has only been 2 days since Addie's surgery. These last couple days have flown by but have gone really slowly at the same time...if that makes sense. Not really sure where all our time goes up here. Last night Addie had her first "bump in the road" since surgery by having an SVT episode. Her heart rate went to the 320's....pretty scary! Today has been a really great day so far! They pulled out one of Addie's chest tubes, a UVC (belly) line, put an NG tube in, started 1 cc/hr breast milk, turned off her dopamine, epi, and lasix, went down on her pain medicine, and gave her an ECHO. She is making some great strides! Hopefully tomorrow her breathing tube will come out. We have a strong little girl on our hands! She is definitely a fighter.

Next big step

So after rounds this morning Camille and I went home to play with Ellie a bit, take showers and change clothes. It was nice to be back home if even for a couple of hours. One of the many great nurses we have had here, Jen, called and told us that the surgeon was running a little faster than expected on his schedule today and that we needed to return pretty soon to see Addie before they started her chest closure. We got back just in time. Donned some surgical caps and masks and were able to step in and see, talk and even touch Addie's hand before the procedure. The chest closure should only take about an hour. We are even more convinced now in the power of prayer getting Addie to this stage quickly and in good shape so keep them coming.