Home at Last

Conlee was discharged from ACH yesterday at 2:00. We got home around 5:30 - and had a lot going on. We are so happy to be home. We went to the doctor this morning for a checkup and she weighed 7.9 and her pulsox was at 90 (they want it to be at least 92). So - we go back tomorrow morning for another check and may have to do that for a few more weeks.

Below are pics from our "adventure." I am trying to get pics off of my phone and my brother's phone that show the Angel One crew arriving at the ICU and us taking off in the helicopter. I'll post as soon as I figure it out!

Finally out of the ER and checked into our room.

The papasan was great as it kept Conlee elevated at the right angle.

In ICU with the CPAC - very scary!

Tucked into bed at ACH.
Our comfy beds (room #1).
The I.V. was one of the worst parts - her veins are so small it took them 45 minutes and 4 pokes! We kept her arm out of the swaddle so as not to mess it up. They told me they were going to put the I.V. in her head and I almost fainted. Thank goodness they didn't have to do that.

Tucked into her "wrap" in room #2.
Room #2 was a shared room - but we got lucky and the other patient went home so we had it to ourselves (for the entire 6 hours we were there).


Christmas Eve - Mom, Dad, Matt and Crawford came to visit. Crawford loved the "outside" playgrounds, Camp Wannaplay and throwing "money" in the fountain to make "ishes" for Conlee.

Because Conlee was so weak - we gave he a bottle vs. nurse because the doctor said that didn't require as much energy. So - I basically lived with my pump! It was good that I did because when she went on the feeding tube - I had enough milk stored for her.

Christmas Day - Crawford took a nap on the couch.


A rare pic - Conlee had her eyes open.
Crawford clapping and singing to the Christmas songs.
Christmas lunch!
Crawford liked the brownies the best. He loved standing at the windows and saying high to the cars and the Capitol.

Santa and Mrs. Claus came to visit (Conlee is in Crawford's blue blanket because hers was being washed).


A family Christmas picture.

Sue-Sue and J-J came to visit.
Crawford saying bye-bye to the nurses.

The monitor that I watched like a hawk. This is when she was doing great. The doctor laughed at me when I took the pic.



On Saturday I finally got out of the hospital and went to the apartment where my parents staid with Crawford. When we pulled in - there was a beautiful double rainbow! I knew it was a good sign.
Crawford showing us his "big boy" bed. He did great on it.

She's the same size as her glow worm.
When she would cry in pain - I would get in bed with her. I slept like this a few times!

Crawford found many ways to enjoy himself... the computer;
making Pops push him in the halls; and chocolate!
The yellow tube is the feeding tube. I was scared to touch her she had so many cords and wires.
We didn't know it then - but our last night in the hospital. Doesn't it look cozy! Note - this was room #3 at ACH.
No more feeding tube - just oxygen.

Do you think we had enough stuff? We were only in the hospital 9 days.

The board that showed she was eating.

No more tubes or tape!

Dressed and ready to go.

Home at last.

Yes - we are still at ACH!

I can not believe that we took Conlee to the ER - 1 week ago today!

Conlee had yet another bad night. She coughed from 11:00 - 5:45 am. We were up the entire time - we had to keep putting her pacifier back in. Yes - we are now a big fan of the pacifier. It's especially important for kids with respiratory problems because it ensures that they maintain the ability to suck.

But, after a bad night we had a great morning. At 7 am she was taken off of oxygen and at 10:00 we stopped the feed and I nursed her at 11:00. She did great. My mom and dad brought Crawford and we had lunch - and that glimmer of hope was rising.

However, around 2:00 - I was in the room with her and her pulsox kept dropping into the upper 90's (it must be 92 to be "good" but they prefer it to be 100). After 10 minutes of this - the decision was made to put her back on oxygen. She is simply too small and too weak to handle breathing all on her own.

The doctor did tell us that in order for us to go home - she would have to be without oxygen and eating on her own for at least 24 hours but they would like to see 48 hours. So - my hopes of going home on Monday are now gone. It is truly a day-to-day waiting game.

I'll let you know if things change - but for now - more of the same. Have I mentioned that this is getting old - and that hearing my little girl cry and cough in pain is the WORST thing ever???!!!

Signs that things are looking up - a bit

We've been here before - so I hate to jinx us - but Conlee had a much better day today. Her flow is down to 1/4 (we've been as high as 5 and as low as 1/4) and she is holding at 100 - which is wonderful! We even stopped the feeding tube at 3:30 and she took a bottle. She did so great that we thought that was behind us. But, as we tried at 6:00 - she started coughing, which raised her respirations, which starts the whole cycle again. So we've made the decision to bag feed tonight in hopes of giving her (and us) a good nights rest. The hope is that tomorrow she will feed from the mouth at least 2 times - and each day from there increase until we don't need the tube anymore. So - while it's not what I had hoped - I do consider this progress.

Bo told me that for the first time since Sunday - he actually feels a glimmer of hope.

To that theme - I left the hospital today - the first time for me to be outside of the walls of Children's. Conlee did so well at 3:30 - that our nurse told us to go do something for an hour and she'd watch Conlee. She was sleeping so well that I decided to "go for it." We went to visit Crawford at the apartment where he's staying with my mom & dad. As we pulled up - there was an amazing double rainbow. It went all of the way from one side to the other (like the pot of gold) - and I told Bo it had to be a good sign. Crawford was thrilled to see us and showed us his room, his bed, his toys. I feel like he has grown up so much this week.

Thanks again for thoughts and prayers.

The good and the bad

Conlee's day didn't get much better with the iv. So tonight they made the decision to go ahead and insert the feeding tube. I hate that because this will prolong her stay. However, since they inserted it around 5:00 - she is doing so much better. Stats are holding great and it feels good to know that she has nourishment in her belly. Our fingers are crossed that this continues and she feels better soon. The doctor's goal is for only to have to be on the tube for 12 hours. So - you can bet at 5 am - I'll be a happy camper if she gets to get that darn thing out!

More of the same...

Last night around 7:00 pm - Conlee again took a turn for the worse. We fought it all night long - her air passages are so irritated that blood was pouring out of her nose and she was coughing it up. This might have been the worst thing so far.

Finally at 7:00 am this morning - she was put back on an iv (thank goodness they got it in the hand because they were discussing putting it in her head), flow was increased back to 5 and O2 is at 35%. These are the exact stats that we had on Tuesday morning. Bo and I joke that it's like Groundhog Day! Now that she's back up - she is resting comfortably.

The Attending just left and the only "bad" development is that she will need to be put on a feeding tube because she needs nourishment - and right now it is too hard for her to do anything other than breathe. They promise that it's not too invasive and that we can use breast milk to feed her. He is hopeful that she'll only need this for a day.

I tried again to get a feel for how long it may be but got nothing out of him. He said he's learned the hard way not to guesstimate and mentioned that he would have been wrong 5 times! So - more of the same - sit and wait. The blessing is that at least for now she is comfortable.

ACH makes it a very Merry Christmas!

Conlee celebrated her first Christmas in the hospital hooked up to tubes and getting oxygen, being suctioned to the point of irritation and receiving breathing treatments. SO not how I pictured things! However, I will say that the hospital made it as joyful as possible.

Starting with a delivery from Santa around 3:00 this morning. She received a bag full of toys and goodies all perfect for a 6 week old. The nurses and I tore into it. We couldn't believe how custom it was!

As to Conlee's status - she had been doing great all night and Bo and I got a lot of much needed sleep. She even nursed at 3:00 and we were very thankful. However, as we've come to expect - around 5:45 - we were awakened by the beeping monitors and nurses that came running. Turns out the RT turned her O2 down around 4:00 (we didn't even know he'd been in we were snoozing so hard). As we've seen over the past few days - when they take it down - she has trouble breathing and we get into the downward spiral. They turned her back up and she was comfortable.

The doctors tell us that at this point there is nothing we can do except wait for the mucous to clear up and for her to get strong enough to handle the decreased O2. No one is speculating at this point when that may be and the attending physician even warned us that she may take another pretty drastic turn for the worse before getting better. So - life continues to be an hour-by-hour situation.

My family brought Crawford up around 11:00- he technically shouldn't be allowed in this ward - but everyone has been more than willing to "break" the rules and allow him to join us. He even napped on the couch in Conlee's room! We all enjoyed Christmas dinner in the cafeteria (it was free for everyone and surprisingly delicious). There were volunteers singing Christmas carols - and Crawford loved dancing with them. When they took a break - the room was silent and Crawford started clapping and yelled "YEA"! The entire cafeteria started laughing. So nice that an almost two year old can bring such joy to a room full of people all enduring their own difficult journeys. The volunteers were also giving out hats and I got Conlee an adorable knit hat - just small enough for her little head.

After lunch Blake and Kari stopped by with gifts for Crawford and Conlee. It was great to see them and the gifts were perfect. Bo went with my dad, brother and Crawford back to the apartment (as an aside - my dad's friend got us a free 2 bedroom executive apartment from Lindsey - it is perfect). Mom and I staid with Conlee and gave her a bath - it was about time!

Next up Keith and Colette came by. It was so good to see them and catch up.

Our next visitors were Santa and Mrs. Claus! They came by to take a picture with Conlee and to give her a Scout (the hospital mascot) stuffed animal. As soon as Crawford saw Scout - he took him - but I don't think it bothered Conlee!

Shortly after they left, Bubba came by and brought us "left-overs" from the Wood family Christmas. He wanted to make sure we had a home cooked meal on Christmas. I've already sampled and it's wonderful.

Bo brought Crawford back around 4:00 and we had a blast playing in Camp Wannaplay. We had a tea party, played the piano and worked on the tool bench. The play areas here are incredible and the in room media/flat screens are amazing. Each room has an x-box and a computer that controls your tv/dvr, movies (over 212 new releases to choose from), music, internet - it's so cool.

Everyone just left for the evening and Conlee, Bo and I are winding down from a really nice day. All in all it's been a day spent with friends and family - much like any other Christmas (aside from the setting).

My baby is still very sick and we've been told we have a long road ahead of us - but at least she was able to spend Christmas resting comfortably. She's been eating for the first time today, so hopefully she'll start packing back on the pounds (she's down to 7.3 oz - which is really good considering what she's been through).

I appreciate all of the thoughts and prayers. The notes, calls and visits - help give us hope when it would be very easy to get down.

Merry Christmas!

Christmas at Children's

We had it confirmed today that we would be spending Christmas at the hospital. It's been one heck of a roller-coaster ride. I'll be sure and post pictures and a full recap - but here are some of the "high (low) lights":

SUNDAY:

• Went to ER at 12:30 on Sunday (her sip and see started at 2:00 - so there was a "sip" with no see)
• Around 3:00 we learned it was RSV and she was being admitted
• 11:00 pm - saw the doctor and felt much better about her status - he even mentioned she might go home the next day

MONDAY:

• Saw the doctor around 8 am and learned we'd be doing great if she was home by Christmas
• Fought it all day with varied levels of oxygen
• Around 3:30 she nursed and looked great! I picked Crawford up from school and had some 1:1 time with him.
• 5:30 - Bo called and she had taken a turn for the worse and I was needed back asap
• 8:00 - we transfer to ICU - her respirations were very high and the doctor was very concerned
• 10:00 - treatments were working and we were hopeful that she would be better soon
• 10:05 - yes 5 minutes later - doctor decides that she needs to be airlifted to Children's

TUESDAY

• 1:30 am - helicopter arrives and Conlee and I take to the skies for our trip (I still can't believe I got to go with her - 1 in 800 odds of being allowed to fly). Bo drove in the car and arrived around 3:45.
  We are admitted to the intermediate care unit (step down from ICU).
• All morning she is monitored and we do various treatments and oxygen levels. She nurses and by noon she is really doing great. Doctor starts to back off the oxygen.
• 2:00 pm - we are transferred to a regular room - nurse says she may go home tomorrow.
• 3:30 - she takes a turn for the worse. Bo and I monitor her through the evening - and she continually gets worse.
• Midnight - nurse calls the on-call doctors and we do more tests and they place the order for her to go back to the intermediate care unit.

WEDNESDAY (so far...)

• 2:00 am - she is bumped back up to full 5 liters of oxygen (exactly where we were on Monday) and looks horrible - it's very hard for her to breathe.
• 3-6 am - Conlee screams her head off and is struggling to breathe.
• 6 - 7:15 - she settles in and the 3 of us get an hour and 15 minutes of sleep (only sleep we've really had since a 20 minute nap Tuesday afternoon).
• 7:15 - present - Conlee screams her head off and can't get comfortable. They are administering a breathing treatment now (which is why I can blog) and my prayers are that it makes her feel better.

My family is headed here with Crawford (I can't wait to see him). No one is even speculating at this point on when she might be released! So - we are mentally preparing for the worse case scenario. Please pray for her - I truly believe that is the best medicine.

Update on Conlee

I am home from the hospital for a minute to be with Crawford (Bo stayed with Conlee). Dr. Furlow told us we shouldn't plan on having Christmas at home :( But - the good news is Crawford doesn't know what day Santa is scheduled to come - so we are just going to do Christmas Eve and Day when we get home. I am headed back to be with her now. Thanks for the thoughts and prayers.

Christmas Time is Here

The Holidays "officially" began at our house this Thursday - Babe and Pops got here! We have been full of holiday spirit ever since. Below are a few highlights.

Allison, Brooks and Garon brought us dinner on Wednesday night (it was so yummy). After they left - Crawford was so fired up from playing with Garon that he didn't want to get in the bath. Bo and I found him (Santa hat and all) in front of the tree in his diaper!

I went to the MCG party on Thursday night (so nice to see everyone). Babe and Pops helped Bo hold the fort down. Conlee wasn't photo ready in this pic.
She was bright-eyed in this one. She is so much more alert these days. Look at her beautiful blue eyes!

We went to Cole and Amanda's yesterday to do our gift exchange. The boys cracked us up opening their presents and "terrorizing" Cole's room. So much fun!

Amanda had cookies for them to decorate. Dumping the sprinkles out was the highlight. Notice Cole sampling the icing in this pic.

Yes - those are sprinkles on Crawford's plate.

Tasting his work. Note - the cookie was our "snack."

We went to the square again last night. All Crawford can say is "ride horse." I keep telling him to ask his daddy for one for his birthday.

We checked out the reindeer and Santa. He was way more into the reindeer! Note - popcorn and cotton candy were his dinner.