Together again!

Hannah is finally home and we are just thrilled to have our family all at home again.  She was released yesterday late afternoon.  Paul was at the hospital with her so he got to do the honor of bringing her home.  Ella, Hailee, and I were anxiously waiting their arrival.

When Hannah got home, she was so happy to see us!  She gave a big smile when they walked through the door.  She just melted my heart.  I held her for a while, and then like I said I would, I took her right up to the tub!  I had already spent ALL DAY cleaning and sanitizing our home, so might as well have a clean baby too:)  Poor Hannah was all tuckered out after the bath.  She was pretty much exhausted all night last night.  We put her to bed at 7:15am and she slept until 9:00am this morning!  We kept checking on her all night to make sure she was ok.  She must have just been happy to be back in her own bed. 

It will take Hannah a while to be back where she was before this whole episode.  The occupational therapist said it normally takes three days to every one day a child was on the ventilator for them to get back to their "normal" motor development.  I do not think it will take nearly that long, as Hannah was already crawling around today and did stand up to the couch once.  However, she gets tired very easily and wants held a lot more than she normally does.  It's totally fine with me, as she lost a lot of snuggle time that we need to catch up on! 

Hannah is still on medication to wean her from her sedation medication.  We have to give each dose precisely, at very specific times.  We even have to wake her if the medication is due while she is sleeping.  We have a follow up with our pediatrician on Friday.  I am anxious to see how much Hannah weighs now.  She doesn't seem much different in size, but I'm sure she had to have lost some weight during her long hospital stay.

Paul took this photo in the hospital once Hannah was strapped in and ready to go.  What a little sweetie!

Ella loved Hannah coming home with lots of balloons that she received during her hospital stay!  You can tell she was in there for a long time because some of them were already deflating :(

This is the best photo I could get of all three girls.  Hailee took Hannah's paci and Hannah was not happy about it.  Then Hannah fell over and we decided that was enough photos for the night!

I tried and tried to get a smile today while Hannah was waiting for her lunch...

and she finally gave me this little half-grin :) 

Ella and I ran some errands today to get some things done before Paul goes back to work tomorrow.  We went to a bakery to get a cake for mom and Ryan's birthdays tomorrow.  I got Ella this cake roll thing there and thought it would be a good idea to let her eat it in the car.  As you can tell, I was mistaken.  What a mess!

Thankful

I woke up this morning feeling thankful.  I am thankful that my little girl is doing so much better now.  I am thankful that she had the opportunity to fight for her health.  I am thankful that she is the feisty little fighter that she is.  I'm sure you hear all the time about tragedies that happen where little babies or kids don't get the chance to fight.  Their lives are taken much too young for reasons that we on earth will never understand.  I know story after story of things like this happening, including my sweet 9 year old cousin who's life was taken a few years back because of a tragic accident.  My heart breaks more for my aunt and uncle now than it did when the accident happened.  Now that I have my own children, it puts things in a different perspective.  I just cannot imagine what they still go through on a daily basis.  The most recent story told to me that I just can't stop thinking about was a high school age kid got a ride home from a friend from school or practice.  The friend hit and ran over the kid's 2 year old little sister in the driveway and killed her.  I can not even imagine.  Even though we have been through what seems like hell in the past two weeks, I am extremely thankful that my daughter is one of the praise stories and not one of the tragedy ones.  I am just so thankful that she had the chance to fight.

Even when Hannah was at her worst, I thanked God every day for my two healthy kids at home and for the progress Hannah had already made.  I tell myself about many instances, it could always be worse.  Spending the past two weeks at Children's Hospital makes you realize this.  I walked out of the elevator on the intensive care floor the other morning and saw a young mom weeping outside of the NICU.  Her parents and husband were gathered weeping as well, trying to consoled her.  My heart broke for this mom.  I have been that mom, crying uncontrollably, not caring who was around to witness.  Another instance Paul and I saw was an entire family sitting in the ICU waiting room with their pastor, crying.all.night.long.  I'm talking maybe 9:00pm until 4:00am.  This poor family.  We knew something was about to happen or already had.  It was just so sad.  I still pray for both of these families daily even though I don't know their stories or their kid's outcomes.  I'm sure there are people out there that pray for us because of things they have seen us go through too.  I am thankful for these prayer angels. 

Last night I spent at home while Paul stayed at the hospital.  I sat down and made a list of all of the people I need to write thank-yous to for the nice things that have been done for us during the past few weeks.  The meals, gift cards, little gifts for the girls, etc have all been so appreciated.  I got a card the other day that read "When going through a hard time, it's the little things that count".  What a true statement.  More than anything, we are thankful for the prayers from so many people.  I am a believer in the power of prayer.  Hannah's outcome is a true testament to that!  Thank you also for the overwhelming amount of care cards, phone calls, FB messages, and texts.  Not one message went unnoticed.  We are so incredibly blessed with such caring and loving family and friends. 

I am hoping this my last "sad" post for a long time.  Hopefully next time I post it will be photos of Hannah's homecoming.  Hannah is not on oxygen anymore and hasn't been for about 24 hours now.  I don't want to speculate when I think she will come home because I don't want to be disappointed if she gets delayed.  I will share the happy news as soon as she is here!  The first thing I am going to do when she gets home is dunk her right in the tub!  She is so yucky from the hospital...stuff stuck to her and everything.  I just cannot wait for my three girls to be together again!  Not to mention, I can't wait to be back on a normal schedule again!

Below are some photos of Hannah's progress.  I don't have any of her off of oxygen completely.  So, she even looks different than the last one right now.

Hannah, looking worse than awful.  This was one day early last week or maybe even the week before. 
I believe she was still on the paralytic here.

Still on the ventilator, but not on the paralytic anymore. 

This was the day Hannah got extubated.  Finally got some toys to play with!

Hannah, yesterday.  All she had here was the nasal cannula and her PICC line. 
The cannula is now gone.  The PICC line is coming out today. 

Our little fighter :)

Yes, that is a smile in the title.  Our Hannah is doing so much better since I last blogged.  She was extubated yesterday.  She was supposed to be on Thursday, but those plans changed when she couldn't keep her saturations up the previous night.  Extubation was am extremely emotional experience.  Hannah was not sedated much so that she would start breathing when they took the tube out.  Therefore, she was mad and fighting.  When they pulled the tube, she cried so hard but barely made any noise because her little voice was so hoarse.  She will probably be hoarse for a few weeks, at least, from the tube being down her throat for so long. 

She did great through the process.  She started breathing right away, but was put on bi-pap to help give her some pressure support breathing.  Bi-pap is a full face mask of oxygen, but is not invasive to her body like the ventilator is.  We were much happier with this.  The doctors said they were prepared if she couldn't tolerate being off the vent.  It would have been my worst nightmare if she had to be re-intubated.  I prayed and prayed every day that when she was eventually extubated, it would be for good.  So far, that prayer has been answered :)

Hannah did fantastic through the night.  She did so well, that they took the mask off and put her on nasal cannula.  She is being weaned from her heavy duty sedation medication.  She was on such strong narcotics, that the weaning process will take a few days.  Paul tried giving her a bottle today and she took about an ounce.  I assume her eating well again will take some time.  She is getting back to her ornery little self again.  She keeps pulling her heart monitors off.  She is grabbing at every tube nearby.  She pulled out her nasal cannula and tried handing it off to the nurse.  She is being so funny and adorable.  She is still building up strength to sit and move around well.  The doctors said it will probably be tonight or in the morning until she can sit again.  She is ready to go to the 6th floor (where Hailee was) but every room is full up there so she will have to wait until one opens up.  We are ready for her to be out of intensive care.

We are SO happy with her progress, I cannot even explain.  We knew that she would get better, but that it would be on her own time and according to God's plan.  We are praying that she continues to progress from here.  She still has a ways to go before coming home.  We are just happy the tube is out and she is getting back to her silly self again. 

I have some photos of her from when she was vented, but am going to take a picture later today and will post all of them together when I have a chance. 

Wean baby, wean!

Hannah had such a good day yesterday. She came down on some more vent settings. She was nice and comfy (well, as comfy as you can look with a tube down your throat) when I left her late afternoon. Paul met me at the hospital for the night shift. He called me at home at about 8:00pm and said Hannah had a fever. Nooooooooooo!!! I was so upset. She hadn't had a fever in over 3 days. This meant her little body was trying to fight off yet another infection. They did blood work to find out what it could be. The poor girl, seems like she just can't get ahead.

Paul called me at 12:30am and said it was another breathing tube infection (she had another breathing tube infection earlier last week that she had already fought off). I'm willing to bet it was from all of the pointless moving of the tube done early yesterday morning. They put her on antibiotics (more of them) and decided they would continue to try to wean her from the vent. They made a couple changes last night and a couple more this morning. She now only needs about 2 more moves before they can talk about extubating. Thank you Lord!

I'm here with her tonight and she is sitting (laying) pretty. We have a good nurse tonight and that can make the world of difference. Some of her nurses are really starting to love on her. They have asked to see photos of her and her sisters. They keep saying they can't wait until she is extubated and not sedated so they can see her smile and listen to her blab. Hannah gets compliments all the time about her sweet round face, long eyelashes, bright blue eyes, and orange hair. Funny, Hailee used to get the exact same compliments up on her floor :) The other day Hannah's respiratory therapist's said that she "is like the girl in high school that he would have a crush on but would be afraid to tell her because of how feisty she was". Our Hannah is a fighter. There is no doubt about that. And if she gets mad about a nurse moving her around a lot, she'll just poop on them. Literally. Hannah has had more blow outs here than ever before. It's a running joke about how loud she poops and the amount that comes out of this little girl.

I am dying at this point to see my sweet girl's smile. I am really hoping it is soon. I tear up just thinking about it. She is my super smiley, always active, never fussy, ever moving baby. Her laying here like this is not how she should be. At home with Ella and Hailee has been so quiet. We all miss our Hannah and want her home. Ella has been asking about her. I just keep saying that Hannah is at the doctor and will be home soon. I wonder what Ella will think next time we go to the doctor.

Please keep praying for Hannah. We appreciate the prayers more than anything. We are so incredibly blessed with family and friends that are here for us, pray for us, love us, and care for us and our babies during this time.

Medical "error" = blessing in disguise?

Well, I have had one heck of a morning here at the hospital with our Hannah. I woke up this morning to a whole bunch of hustle and bustle going in in our room at about 6:00am. Not to mention i had only slept two hours all night. A x-ray machine was being rushed in, people were converging, once again. They said Hannah's breathing tube had "slipped" and that by accident, she was almost extubated (the tube was almost completely out which would not have been good considering the breathing assistance she is still requiring). A few professionals rushed in to fix her tube. This was a big deal. My poor girl had to be given a timed dose of the paralytic medication again so that they could mess with her. All of the ventilator weaning that had been done overnight was all set back to high frequencies again. So, they pushed the tube in about 2cm, which is what the x-ray showed was needed. Then after all of this chaos, they did another x-ray to confirm the new placement. You will never guess, but yep, it was in too deep. Are you freaking kidding me? Now they were going to have to medicate, untape her face, move the tube AGAIN, retape, and settle her back down. I just sat on the couch sobbing and sobbing. When the 30 minutes of Hell was over for my sweet girl, they admitted to me that moving the tube in the first place was a mistake. So, now they had paralyzed my baby again, moved the tube out, moved it back in again all for nothing. They said Hannah must have been laying the wrong way when the original x-ray was taken. She showed false misplacement of the tube. They said it should've been the nurse or respiratory therapist's job to confirm that she was laying correctly. They both admitted that they were not present for the original x-ray. I was devastated that this would be another setback for Hannah and it was all because of an error that should've never happened in the first place. Everyone kept coming in, asking what they could do for me, apologizing for the mistake. I just wanted to be alone with my Hannah.

Doctor rounds were about two hours later. I didn't say much at all. I was still so upset. Their plan for Hannah today was to continue to wean on the vent, as much as she would allow. They assured me that Hannah still has a ways to go and that she will get better on her own time. I cried again after rounds were over with. Another day of just sitting here and not much change going on.

I took a nap. I was so exhausted from such a crappy night of sleep and being so upset all morning. I woke up about two hours later. I felt like something had changed. I looked over at Hannah's monitors. Ideally, Hannah's Rate has to be 6, her Peep has to be 6, her FIO2 has to be about 30, all while her oxygen level remains over 93 to even consider being extubated. For the past three days Hannah's rate has been 12, her Peep has been 12, her FIO2 has been 50, and her oxygen level has been about 92. When I woke up from my nap, her rate was 10, her Peep was 10, her FIO2 was 35, all while her oxygen is sitting at a nice 94. These numbers may not mean much to you, but it means she is FINALLY tolerating lower vent settings and is working towards extubation. Her Peep has never been lowered until today and the FIO2 has never been below 45. She looks comfortable and the healthiest that I've seen her. She's no longer puffy with extra fluids. She looks like my little Hannah, minus the 20 tubes she still has all around.

I don't know if moving that tube this morning, a mistake or not, maybe has a better effect on her. Maybe it is in a better spot and she can finally take on more breathing on her own. Maybe she is finally turning the corner that the doctors have been telling me all along that she would eventually turn. Whatever the change is that has been made, I am so happy she is making big progress. I am hoping and praying like crazy that she can continue to be weaned today. I keep reminding myself that only God knows what is best for Hannah. He knows when she will get better. He will keep us all strong until then.

A little lightheartedness..

I thought I would post some photos from today.  We are still keeping our heads up, and trying to have fun with our two little ones here at home.  I brought the Cozy Coupe inside the house yesterday.  Ella wanted to go somewhere so badly and for obvious reasons I could not take her anywhere.  I tried to bring some different fun inside the house.

Bringing the outdoor fun inside!

"CHEESE!!!!!"

As you can tell, Hailee is back to normal...crying because she wants picked up and held.

Giving little sis a ride!

Little Hails beeping the horn :)

Having a good old time!

Ella teaching Driver's Ed 101

Paul should be home soon, and then I am leaving to head up to the hospital for the next 24 hours.   I am hoping for an uneventful evening and night with our little Hannah. 

RSV

Well, our trip to Disney was cut short because Hannah and Hailee got sick at home.  My parents had them for the long weekend.  Mom knew something with Hannah's breathing was not right on Sunday morning.  Let's go back for a sec...Friday morning (Ella and I flew out Friday at 7:00am.) both girls woke up with a fever.  Mom gave them Tylenol, babied them a bit, watched them closely.  Saturday they were fussy, congested, and started a cough.  Sunday when they got up from their morning nap, Mom said something had changed with Hannah's breathing.  She seemed to be struggling for air.  I told her to go ahead and take them to the ED at Children's Hospital here in Columbus.  Paul and I then started our long day of calling airlines, trying to find early flights home, and waiting standby at the airport. 

Hannah was admitted to the PICU (Pediatric Intensive Care Unit) right away.  They observed Hailee for a while and decided to admit her too.  She wasn't nearly as bad as Hannah, so she went to a regular floor.  I arrived at the hospital Sunday evening.  Poor Hannah was put on bi-pap (you may remember they were both on c-pap in the NICU when they were born.  This device was similar).  It was a full face mask and she hated it.  She had these big IV arms and just kept smashing them into the mask and crying.  It was heart breaking seeing her so miserable.  Hailee was put on nasal cannula, given a little bit of oxygen, and had scheduled breathing treatments every four hours.  She could sit up, play with toys, and be held.  Hannah could not do any of these things.  The bi-pap was not helping Hannah enough.  On Monday, she was intubated.  I was devastated.  I had run home for a quick second to shower for the first time since Disney (gross, I know).  Paul called me on my way back to the hospital and said they were going to have to intubate her.  I hurried as fast as I could to see her once more before she was put out.  By the time I got there, Paul was in the waiting room and said it was already in process.  Her breathing was so bad, they could not wait.  I had break down #47 or so of the week.  I just couldn't handle it.  How could she have to be intubated AGAIN?!  My girls already went through this less than a year ago!!! 

Hannah was now on a paralytic to keep her completely paralyzed and calm so that her lungs would work and start to heal.  She looked like a completely lifeless baby laying there.  It was so awful, I cannot even explain.  I never thought I would say this is a million years, but this experience has been even worse than the NICU was.  Our girls are older now, have their own personalities, and should not be laying there like this.  This was now their second Valentine's Day in a row that they were hospitalized.

Both girls tested positive for RSV.  Unbelievable that all of this to an adult, or older child is JUST A COLD!  They could've gotten it from anyone with the mildest stuffy nose or cough.  It takes a different toll on different people.  Hannah and Hailee both have the same virus, but have apparently taken different paths.  The girls are not more likely to get RSV because of their prematurity, but they are more likely to have severe cases of the virus because of their little premature lungs.

On Wednesday morning, they tried to wean Hannah from her paralytic.  She lasted about four hours, starting moving a couple fingers and toes, got extremely agitated, and it all went down hill from there.  She started having desaturations, and couldn't tolerate it.  I'm talking monitors beeping all around, doctors converging, the type of thing you see on TV.  Paul and I are just standing there bedside in the midst of about ten people, feeling helpless.  She was quickly put back on her paralytic, and all of her vent settings that were turned down were turned back up.  As you can imagine, break down #74 occurred by her mama.

Hailee was getting better.  She was getting back to her normal, high maintenance self...wanting to be held and snuggled all the time.  Paul and I slept at the hospital every night.  One in Hannah's room and one in Hailee's.  Poor Ella...she comes home from a fun time in Disney and then mom, dad, and her sister's all just disappear for a few days. 

On Thursday Hannah was finally weaned from her paralytic.  This was a huge step, as it is the first thing that had to be done before any vent settings could be lowered.  She got a fever once on Thursday and once on Friday.  That extremely agitates her.  She gets all uncomfortable, moving around everywhere, which generally sets off the monitors.  It is best if she is calm so that the medications and machines can do their work.  She is still extremely sedated, and will be until she is extubated, but you have to be sedated with a huge tube down your throat.  Her hands are tied to the bedside so that she can't grab the tube. 

Hailee was released Friday.  She is home now and doing fine.  Once again, we were leaving Hannah at the hospital and her sister got to go home before her.  It's the same feeling as the NICU...happy one is coming home but devastating leaving one there.  Paul and I now have been taking turns staying at the hospital every other night.  One at home with Hailee and Ella and one at the hospital with Hannah. 

Hannah is now doing a little bit better.  She hasn't had any episodes in the past 48 hours, so her vent settings are SLOWLY starting to come down.  They will work more on weaning her today.  They originally told me that kids like her are vented from RSV for about 5-10 days.  Today is her 6th day.  I am hoping she can be extubated by Tuesday.  No one has said that, but I'm just guessing.  Of course if she has any more setbacks, that time frame will change. 

Once my girls are home, we will be doing NOTHING outside of our house until RSV season is long gone.  I am not taking any chances.  RSV season is SO bad this year.  They say it is worse because the weather has been so warm and nothing has frozen.  About one third of the kids in the PICU are in there with RSV.  It is extremely sad.  Every room you walk by, the child is intubated.  No one is allowed on any floor at Children's right now during RSV season.  The only people that we have seen are my parents, our pastor (He has come to pray with us every day.  He is a good, good man.), and our one friend that is a nurse in the ED at the hospital.  RSV is a big deal.  We are proof that it can really take a toll on little ones.  And again, RSV is just a common cold in any healthy adult or older child.  It's so scary.  I will now be that nervous, neurotic, disinfecting, crazy-cleaning lady that I was right when the girls came home when they were born.  We won't be able to go to church, the grocery, the mall, or half the other places we normally go.  I feel bad for poor Ella.  She hates being inside all the time.  I am going to have to come up with more fun things to do indoors for a while. 

Please keep praying for both of our girls to get completely better.  Pray that Hannah can soon be weaned from her vent and that the Lord brings comfort and strength to her.  It is so important that she stays calm and is comfortable.  If you know our feisty little Hannah, you know that she is anything but calm.  She is ever-moving and restless.  This is not so good in the type of setting she is in.  We are so thankful for our support system and group of prayer warriors.  I know our little girl will come out of this, it is just such a slow process.  Please pray for Paul and I to have utmost hope and trust in our Lord during this time.  It is hard at times to keep the faith with so many setbacks.  We are trying hard.  I know that the Lord will not give me anything I cannot handle...but really, how much does He think I can handle?!  Going through all of this once was horrible, and going through it a second time is just unimaginable. 

Below is a video of Hailee in the hospital.  Friends of ours sent balloons and a bear to each girl.  I took this video to send to her but thought I would share since it is cute!

Hailee, trying to break free!

I don't have any photos of Hannah, but trust me, you would not want to see any right now :(

Disney!

Our (quick) trip to Disney was fun while it lasted!  Ella and I met Paul in Orlando for a couple days while he was there for work.  Ella loved everything about our trip...the plane ride, meeting the characters, the parades, all of the rides.  We had so much fun!  Seeing Ella's face through all of this was absolutely priceless. She really did have the best time ever! One thing is for sure, next time we will be bringing all of our kiddos...and hopefully next time is sooner than later!  The photos will speak for themselves.  Enjoy!

Ready to go!  All decked out in Minnie-wear!  :)

Doesn't she look so old in this outfit?  Where is my baby?!

Waving "hi dad" from the train ride in Downtown Disney.

"Hi dad" again!

Ella and Pooh

Ella loved buying things and trying things on.  This hat for instance, she did not want to let go.

Ella confescated the Minnies that we bought to bring home for the twins.

The morning of Magic Kingdom Ella could not wait to get out of the hotel!

On our way riding the tram!

Daisy loved Ella!

Sleepy girl..

Her one and only meltdown the whole time we were there!  She was SUCH a good girl!!

It was so cold out, so we bought Ella this sweat suit.  Isn't it cute??

Eeyore was the ONLY character that Ella was apprehensive about.

Big hug for Pooh!

Ella cared most about getting the autographs of all of the characters.  Then she would hug them...if they were lucky!

What a day!

Watching a show on the street.

Ella LOVED this balloon.  She thought it was funny to hide behind.

and of course she got some cotton candy to top off her dinner :)

Ella loved meeting all of the princesses.  They kept telling her that she was the princess!  She loved the attention.

Showing Mickey and Minnie that she has ears too....how cute is this?!

Family photo!

So happy to have some mommy and daddy time all to herself!

What a fun day!

Waiting stand-by was no fun.  Little did this sweet girl know what sadness was waiting for us when we would get home..