Need to vent

But I won't. Not here. Not now. But frustrations, they are a plenty. I just don't want to waste my time away from my girl posting about how frustrating, and sometimes annoying, life can be in a children's hospital.

So, on with the important stuff. Abby. She's doing well. Much, much better than before. We had some very scary moments late Thursday night and into Friday morning. She was in a lot of pain and we couldn't seem to get it under control. Her oxygen levels were not good, and she seemed to be laboring just to breathe. At one point, at some ridiculous hour of the morning (3am-ish, I think), me, her Daddy and about 5 or 6 nurses were all at her bedside trying to help her get comfortable. It was very scary. Ultimately they decided she was refluxing badly (thanks to the NG tube), so they ended up putting a small tube in the back of her throat to suction out whatever was back there choking her. It helped a little.

Friday was a little better. We did a better job of managing her pain. I was even able to take her out of the crib and snuggle with her a bit. She became incredibly bloated and puffy. Her little face was almost unrecognizable because she was so swollen. And when she would open her eyes, they were empty inside. Her sparkle was gone. It was like she was looking right through you when she looked your way. I know it's just the morphine, but it is so hard to see your little one like that. She started running a very slight fever in the early afternoon, and had a little bit of junkiness in her lungs, but they said these are both typical things that happen post-op. So we took the blankets off to cool her down and that seemed to do the trick. Her fever went away and eventually she coughed out the junky stuff.



And just for the record, we are not trying to make a fashion statement of any kind with that bow on her head. It is there to hold the NG tube against her head. Otherwise her skin gets pulled.

Last night was a million times better than the previous. She fussed a little, right around the time she was due for the morphine, but she quickly went back to sleep. She did not have any desats, and her breathing was good. Her Daddy and I were both actually able to get a little sleep. Not a lot, but more than we have had all week.

And today? Today has been really good. A lot of the bloating has gone away. She spends more time awake. When she cries now, it actually sounds like the old Abby cry. Not some drug-induced, hoarse, whimper of a whine. She even spent about an hour sleeping on her tummy, on me. In the old, familiar way. It was so nice...for both of us, I think. We have increased the time between pain meds to 2.5 hours, instead of every 2 hours. We even propped her up and put her favorite show on...Baby Beethoven. I think she really enjoyed that.





I had to put socks on her hands (I don't have any mittens), because she wants to pull that NG tube right on out of her nose. And we know from our NICU days, she'll do it! They are also on because the morphine makes her very itchy. She keeps trying to rub her nose and eyes. You can probably see the redness where she keeps scratching.

So that brings us to now. She is resting quietly back in her crib so I snuck away to Starbucks for a minute. Daddy is with her though. I better go for now, but not before I put up a few more pictures from today.

Oh crap...I almost forgot...we've got gas!!! We are starting to hear bowel sounds and she has passed a little gas! Tushie-sneezes, if you will. There was even a little somethin' somethin' in her diaper today. I won't post it, but you better believe I took a picture of it! And her catheter came out this morning. Doc says we may start clear liquids Monday. Fingers crossed...









Thanks again for continuing to pray for Abby. She still has a ways to go, but each day we get closer and closer to ending this chapter for good. I can't wait to see what excitement the next chapter has in store for her.

Update coming soon...

The longest day...

It's 9pm and I have finally made it to Starbucks for a few minutes to post an update. First of all, Abby is well. More on that in a moment.

We didn't sleep a wink last night. They had to move a little girl into our room at
3am. We were up anyways, so it wasn't that big of a deal, but it certainly didn't help matters. Then at 4am, Abby's bag leaked. We had to change it one last time. At 6am, x-ray came to take a picture of her chest, and right on time at 6:30, they came to take us to surgery. I was able to carry her the whole way down and they wheeled the crib along side. We signed some paperwork, met with the doctors, and then had to hand her off to the nurse to be taken away. Probably the hardest moment of my life...so far.

She was in surgery for 4 hours and 7 minutes (but who's counting?). Longer than expected, but she did well. She has a central line placed in her chest, but was able to be extubated immediately after surgery. Brian saw her in recovery for a few minutes, then they kicked him out and I stayed with her for about an hour and a half.



We were finally taken back to our room at about 1pm. Abby has an NG tube in her nose. It is collecting all the "stuff" in her belly, since her intestines are not yet working at all. Her central line in her chest will stay there until we are discharged. She was getting morphine every 3 hours, but they have upped that to every 2 hours now. She has been on and off the nasal cannula, but seems to be doing better with her oxygen saturation now that we have gotten a little further in the day. She also has a catheter right now. And unfortunately, she lost a little more blood than was expected, so she is in the middle of a transfusion. Her red blood cell count was a little too low for the doctor's liking. And to be honest, she was looking very pale. Her transfusion should be done at about 2am, and her color has already started to improve.

Now we just wait, and manage her pain. The fluid coming out of the NG tube has to turn to clear, then we will know the intestines have started functioning again. After that, they will listen for bowel sounds. Once that happens, we should start to see some poop, or at least something, coming out of her little tushie. Once the poop starts, they will slowly start her on clear liquids. As long as there are no unforeseen obstacles, we expect the whole process to take another 5-7 days.

I am not going to lie...this has been a very difficult day, for everyone. We are a little worried about her desats, but as long as they are fewer and farther between, it is a good thing. She is clearly in a lot of pain and she is very, very hungry. She has been constantly making a little sucking motion with her mouth. She must be dreaming about her bottle.

Again, thank you all for the support and love that is pouring in. And thanks to the visitors that stopped by to wish Abby well. I am sorry if I didn't respond to all of the test messages and voicemails, but service in the hospital is spotty, at best. I have to get back now, but I will end with a few pictures from this afternoon, taken once she was back in her room.













And yes, that is a heart-shaped dressing made especially for Abby by Dr. German...in honor of Valentine's Day. And yes, that little C in the middle does represent the Chicago Cubs...also by Dr. German, to match the sweatshirt her Daddy was wearing today.

More tomorrow, but for now I have to get back to my girl...

Day 2 and things are good!

Wow. I just read everyone's comments, and as always, they brought tears to my eyes. Thank you all SO much for praying for our little family. For those of you whom I haven't seen on my blog before, I can't wait to go check out YOUR blogs, and I will do so soon, I promise!

How's Abby, you ask? She's great. A rockstar. But we already knew that. So far we have literally just been "hanging out". Except for a small heel prick to take some blood last night, it's just been life as usual. We are really just trying to keep her entertained in our little corner of the room. She shares it with a little boy...22 months old. I think he may be going home today or tomorrow...lucky him. And ironically, his Daddy is a firefighter too, so we've had lots to talk about.

Today is another day of just hanging out. We've pretty much moved the whole house over here. Boppy. Gymini. Bouncy seat. You name it, we brought it. Its the only way to keep her busy. She's not one to just lay around. She likes to be on the move. And entertained.

She will have a chest x-ray later today. She's been doing really well, considering she's been on a clear liquid diet for more than 24 hours now. I guess the "observation" is just simply measuring input and output and checking her vitals every 4 hours. Other than that, we just try to play with her. We are avoiding any walks or activities outside of our room because there are a lot of RSV patients in there right now.

All of the real excitement will start tomorrow morning at 6:30. She'll be taken to St. Joe's for surgery. It looks like they will be placing a central line in her neck. Ugh. It will have to stay in until we are discharged. Unless something unexpected happens, they plan to extubate her immediately after surgery. She will be brought back to the room and her pain will be managed with morphine. Then we just sit and wait. Sit and wait for poop. Who knew we would be waiting for such a bodily function to occur??? And with such excitement and anticipation, too!

So, I stayed with her last night and learned a little math.

Clear liquid diet = no reflux
No reflux = one comfortable Abby
One comfortable Abby = an entire night of peaceful sleep for baby!

That's right! I swear she had the best night sleep of her life last night. I put her in the crib at 8pm. She slept through a vitals check at midnight and another one at 4am. And I had to wake her up at 7am for a bottle and diaper change! She slept all through the night. In her crib. This clear liquid diet has really done wonders for the reflux. I know I still have to give her milk, but now I am wondering if we should try something different? Maybe soy? She is already on a specialty formula for allergies to cows milk. But maybe we need soy formula? Do they even make that? I'll have to call the pediatrician when we get home.

Well, that's the latest from here. I had to run to Starbucks to get on the internet, so I suppose I should be getting back to Abby and her Daddy. Here are some pictures from our first day in the hospital. Aside from the institutional, jail-like crib...things aren't so bad!

Waiting in the lobby to be admitted


Laughing at Daddy


Giving the crib a test run


"if you're not going to feed me, I'll just eat my arm!"


Playing the piano


Visiting with Grandpa Gary

He had to bring us baby wipes. Apparently wipes aren't in the CHOC budget. Diapers? Yes. Wipes? Nope.

I will try to update after surgery tomorrow! Thanks again, to everyone, for being so awesome! And if you don't mind, please keep praying. The hardest days are still ahead of us.

Getting ready

It's been a tough day, and I am sure the next few will be even worse. I called the hospital this morning to see what time we needed to be there and they said 8am. I think that's when it finally hit us. I cried. Her Daddy cried. She was sitting on her Daddy's lap just looking at us.



Our sadness must have rubbed off on her because next thing you know, she threw her little bottom lip out in this sad little pout



Ugh. Let's just say many more tears were shed. But soon after, Grandma Jean came over and cheered us all up. Daddy and I went to Babies R Us and bought her some super special, snuggly warm pjs for the hospital (it's freezing in there). I was careful to get some that they will hopefully let her wear. They don't have feet and have snaps so leads and IVs and wires and such can come out between the snaps. I think I'm just about done packing her bag. Favorite toy. Check. Favorite blanket. Check. Butt paste. Check. Favorite puppet. Check. PJs. Check. Zantac. Check. Bottle. Check. Paci. Check. Awesome post-surgery gift from her friend Luke. Check. Camera. Check. Computer. Check. Formula for when she can eat again...5 days or so from now. Check. Burp cloth and bib. Check. Hat and socks. Check.

Come to think of it, I am probably bringing way more than she will need, but I want to keep things as familiar as I possibly can for her, ya know? I just hope I am not forgetting anything. Well, that's all for now I suppose. Not sure what the internet access is like, but I will do my best to update as often as I can. I have to say a huge "thank you" to you all, for keeping our little Abby in your prayers. We know she will get through this with flying colors, just as she has before.

Exersaucers Rock!

She's not quite big enough for it yet, but we wanted to give it a little test run. Looks like it's a hit!

Random Picture Challenge

It's Saturday, and that means another random picture challenge from Brittany. This week it's August 2007, picture #30.

And so, my #30 is....



This was taken after we finished playing a round of golf at Wailea in Maui. Brian was calling to get us a shuttle to take us back to our hotel. We were there on our belated honeymoon. *Grin*

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On a totally different subject, check out what ML did for Abigail over at Meet Me in the Clubhouse. Seriously...I'm still crying and I saw it over 20 minutes ago. The sweetest thing ever. Thanks ML.

Unexpected...

Abby had her pre-op appointment with the surgeon. He said every thing looks great and we are a go for surgery next Thursday as planned. On his way out of the office I was stunned when the conversation went like this:

Doctor: "Great! See you Tuesday".
Me: "You mean Thursday, the twenty-ninth".
Doctor: "No, I mean Tuesday.
Me: "But Tuesday is the twenty-seventh".
Doctor: "Yes it is. She needs to be admitted on Tuesday, the twenty-seventh".
Me: (luckily to myself and not out loud)..."what the bleep-ity-bleep-bleep-bleep?!?!"

Apparently, and I was not told this by the scheduler when they called, Abby has to go in 2 days early for observation, another barium enema, and some other pre-op tests. This I am NOT happy about. I had finally come to terms with putting her in the hospital on Thursday, knowing that she would quickly be put under and then for a few days, not really know where she was or what was going on. Instead, she has to go in on Tuesday and will be very aware (and probably not happy) of her surroundings. Ugh. We also have to start her on clear liquids for 2 days. Man, she is not going to like that.

My sweet little innocent baby. She just has no idea what we are about to do to her. I am broken-hearted over the whole thing.

Wordless Wednesday

(Abby and her BFF Tatum)

Random Picture Challenge

Brittany is doing a random picture challenge, so I'm playing along by posting the 8th picture from my January folder.

Abby at the Beach

We had a beach outing yesterday with the Mitchell's. Our little sun goddess got right to work on her tan. This is her Mom's favorite beach activity too. I guess the apple doesn't fall far from the tree.



Tatum enjoyed some play time under the tent.



And Tyler was just hard to keep up with.



And we saw some dolphins before packing up for the day...





Ahhh, this is the life!

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In other news, I have given up on the Miracle Blanket. She just doesn't like it and I still can't get past the straight-jacket-y feeling. It may work for some, and maybe if we had used it from the get-go it would work for us, but I'm over it. The good news is, she has made it 2 nights in a row now without getting up to eat! Yay for us! She still fusses and I still pick her up and put her on me half-way through the night, but I think we might be gettin' somewhere. Finally. Keeping my fingers crossed that this continues...

Miracle Blanket Results

Well, the night wasn't a complete success, nor was it a complete bust. She did sleep for 5 hours straight, which was quite an accomplishment. Now if only I had gone to bed when she did, I could have had 5 hours myself! But I digress. When I picked her up to feed her at 1:30am I found that she had completely turned around. Her head was where her feet had been and her feet were up where her head started. Poor thing. She really must have been squirming around to get out of that thing. After I saw that I just didn't have it in me to put her back in it, so she slept on me the rest of the night. I find myself really struggling with the whole arms-at-her-side, straight jacket thing going on.

So now it's our 2nd night with the blanket. She fell asleep about 20 minutes ago so I wrapped her up in it and she is now resting peacefully in the PNP. I hear a little bit of squirming, but I am sure she will settle down. And I have decided that I too will go to bed right now, rather than staying up and say, oh I don't know, blogging for the next few hours.

With that said, I am off to bed. Wish us luck!

Oh, and just in case Daddy checks the blog tonight, here's a couple of pictures of our evening fun...

Operation Crib

Update:

Our Miracle Blanket arrived in the mail today! I'm not gonna lie, it does very much remind me of a straight jacket. I am having a really hard time with the fact that her hands are secured down at her sides, as she is at the point where she loves to have her hands/fingers in her mouth. Guilt aside, she is in it. I put her down in the PNP a few minutes ago, so we will see how the night progresses. She did stay up later than usual because she had a late nap, and for the first time in a while, I was able to give her a bath right before bedtime (she can only have a bath when her bag leaks, which, as luck would have it, is almost always at some rediculous hour like 5am or something.) What I am trying to say is I have the cards stacked in my favor. Up late. Bath right before bed. Miracle Blanket.

Fingers are crossed. Now...I gotta go. American Idol is on.

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Well, it's day 2 of Operation Crib. We are making strides, albeit, very small ones. Here's my thought process about the whole thing:

Abigail is a terrible sleeper. I think mostly because of her reflux. That and when she was in the hospital she often slept on her tummy (they can do that there because they are hooked up to the heart monitor at all times). My point is that she LOVES sleeping on her tummy and does so quite peacefully. The same cannot be said for her on her back. Anyhow, we have a Pack-and-Play set up in our bedroom. She spends about the first 3 hours of every night in it, sleeping on an incline and on her back. But after about 3 hours, she wakes up hysterical, gassy, and often throwing up, so I pick her up and she spends the rest of the night sleeping on her tummy, on me. Great for her! Not so much for me.

So the thing is, she is almost at the weight limit for the bassinet of the PNP, and with her going into the hospital for a while, I'm thinking we should go cold turkey and go straight to the crib after her hospital stay. I thought I would try to get her used to the crib by putting her in it for naps. Normally, she naps on her tummy on the sofa where I can watch her at all times. Today she fell asleep in my arms so I put her down in the crib and she made it about 25 minutes before she realized where she was and freaked out. So of course, now she is back sleeping out in the living room next to me.

I am sure she would do fine sleeping on her tummy all night, but the what-if-something-happens is just too much for me to bear. Not to mention I spent 7 weeks in the NICU being drilled daily on the whole "back to sleep" thing. I probably wouldn't be so neurotic about it except for the fact that someone very near and dear to me just lost her 8 week old grandson in November to SIDS. So sad.

I have been completely sleep deprived and every ounce of my body hurts because I sleep with a 13 pound baby on my chest every night. She can obviously sleep just fine without me, because she takes great naps. I don't think I've done too much damage yet. But if I don't get some sleep here pretty soon, all heck might just break loose.

As a last resort, I am anxiously awaiting a Miracle Blanket in the mail. After reading about them over at MckMama's, I thought I would give it a try. (By the by, I purchased it on eBay for about half the cost. Yay me! Oh how I do love eBay!) ML sent me a swaddling blanket with feet, which I love except that she Houdini's her way out of the swaddle in about 10 seconds flat. And I know people typically stop swaddling around 4 months, and Abby is almost 5, but her adjusted age is just barely 2 months, so I think it is ok to still swaddle???

I am at a loss. Our nights are very long. And when we don't sleep well at night...well...our days are even longer. Ugh.

Psssst...

(In a whisper)...Guess who is napping in her crib for the first time ever?



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Update.

30 seconds later...

(in my regular voice)...Guess who is not napping in her crib anymore but rather crying hysterically because she was startled awake by a camera flash?

Another. Lesson. Learned.

Just another not-so-manic Monday

Brian got home from work this morning and it was already in the 70s, , heading to the 80's, so we decided to take a walk and took Abby to the beach for the first time! First we got her dressed in an outfit that I never thought she'd be able to wear (a summer outfit in her winter size)



We started at our favorite lunch spot on Main Street.



Sat outside on the patio and enjoyed the view



Had a yummy lunch and decided since



we would enjoy a little



I mean, after all, if you



We pretended to be



Well, actually, we are Irish everyday. Then we decided to take a walk out on the pier



Watched the surfers as they waited for a wave



Finally saw one get up



Noticed a guy trying to catch dinner



And a seagull lurking



Took some random pictures





Brian and Abby met a bear



And forgot to turn the flash on for a picture of me and Abby



but somehow remembered when it was Daddy's turn



Can you see Catalina behind him?

After spending some time out on the pier, we decided to head back to



but they were closed.

And someone seemed to have had enough



Little did we know that she was faking it. We got home and she proceeded to have one of the biggest meltdowns I think I've ever seen.

Can you say overstimulated?