The Rest of Day 63; what happened after the kids left (2/7/11)

Hannah's last picture.  I'm sad it is not one of Hannah in my arms!  Blood draws are no fun!

The Rest of Day 63

Bear with me this post will be hard for me.

The kids left around 4pm.  It was so nice to have them with us at the hospital.  They all got to hold Hannah and I got to hug and talk with all of them.   Cassie had brought me some clothes to change into and I was planning to take a shower once the kids had left.  I had been wearing the same clothes since Saturday.  I was feeling ready for some new clothes.  :-) 

Rick walked the kids out to the van and I sat with Hannah Grace.  I also needed to pump milk so I sat and did that.  I was getting quite hungry and was ready for dinner to arrive.  When Rick came back I needed to use the bathroom so he grabbed Hannah.  I was also planning to figure out if I could take a shower soon.  As I trying to figure out how to do this shower.  We had a visitor stop by.  It was Rachel and she brought her sweet Caitlyn by to visit.  Caitlyn also has Trisomy 18.  She had just turned 2 years old.  She was in the hospital for a couple months as she has just gotten a tracheotomy put in to help her breath.  I was so excited to meet Caitlyn and Rachel.  I was so glad they stopped by. Rachel was taking Caitlyn for a walk and she decided to come see Hannah.  We introduced her to Hannah.  Rachel also had medical supplies she was going to give us to use for Hannah.  What a blessing to visit with a fellow T18 mommy!  I plan to go soon to see Caitlyn and Rachel soon. They live a couple hours away but I it would be good for me to see them again! 

After Rachel and Caitlyn left, the doctor stopped by to talk about Hannah's EEG  and the Echo Cardiogram.  The doctor was so nice and caring.  He told us Hannah EEG did not show any seizure activity so they figure Hannah's stop breathing episodes were not seizure related.  The Echo cardiogram was a bit disappointing as it showed her holes in her heart had not healed. Dr. Levine said he did not hear a heart murmur so possibly the holes have healed.  We were also told my the neo-natalogist that the holes will heal on there own.  So we believed that they were healed.  But now we found out they had not healed and the cause of her breathing problems are related to how her heart and lungs are not working properly together. She has high Carbon Dioxide in her blood.  This tells us that her blood is not getting cleansed by the lungs but the carbon dioxide is going back into her blood and not out to her lungs to get cleaned.  The plan by the doctors was to keep Hannah's oxygen levels higher so she gets that cleaner oxygen.  The doctor was going to let us go home with Hannah the next day.  All  they needed to do was set up the oxygen for home care and get us a portable oxygen carrier too.  Ok,  This was disappointing but I was excited to be able to go home with Hannah.  I'd make carrying her with oxygen work for us.  Whatever we needed to do to love on Hannah.  The doctor was so kind and nice.  We have such good memories of talking with him. 

The doctor leaves and Rick is ready to get up he'd been holding Hannah for a while and he needed to stretch.  I was more than happy to have Hannah back in my arms.  I got all comfortable and little did I realize this short time for holding Hannah would be my last time.  I got the pillows all comfy and was just soaking in the enjoyment of having Hannah all to myself for a while.  Forget the shower!  Hannah starting to stop breathing.  I try doing my special things to her  feet and bounce her to remind her to breath.  But this time it was much different.  She started to get straight.  Just then the nurse walks in and sees Hannah.  I right away pulls the alarm for Code Blue.  She did not tell us her worry.  I had no idea that something terrible was going down.  She asked for me to put Hannah on the bed.  I placed Hannah on the bed. The nurse grabs the oxygen and tried to add more oxygen in but Hannah still is not breathing. 

They tried twice to get the breathing tube in the right spot but each time they could not get it in.  I asked the doctor sitting by us, crying in my voice will they give up on her?  He said, "no don't worry, there is more they can do."  They brought in a machine which has a camera on it.  They used a camera to put the tube down Hannah's throat.  Ok,  I was thankful for that machine.  They were able to place the breathing tube.  One nurse was on the breathing pump.  She manually pumped oxygen into until they hooked up Hannah to the machines in the PICU. They told us when Hannah is more stable they will be taking her to the PICU on floor 3.  Ok.  We can do this.  Oh Man!  What a shock from you can goo home tomorrow to going to the PICU.  Well at least we were here at Children's and they were working on saving her.  I'm not sure how long we were sitting there watching CODE BLUE unfold before our eyes.  I have to tell you I'd think about it and it would bring alot of sadness as it was very hard to watch. 

Hannah was stable enough to go to the PICU so they told Rick and I was could walk along with Hannah.  I was so happy to be able to go with her.  I was kinda expecting to be told I could not go along.  The nurses packed up all our stuff everything even the pictures on the wall.   I had no idea we would not be going back to this room.  I thought we'd be packing up our own stuff.  It seemed kinda weird how fast it all went. 

We take a elevator ride to floor 3.  The elevator was full of Hannah's crib, Hannah's PICU doctor, social worker (she did not leave my side even though I did not want her really), Hannah's nurse pumping the oxygen, Hannah laying lifeless on her bed,  Rick and I, and who else I'm not sure.   It was sure a strange ride up and this was new territory.  We have never been in the PICU in the hospital.  We can do this with God's strength.  They get set up in the room in the PICU.  They ask us to leave while they get things set up.  We go out to the parent room.  The social worker asked if I wanted anything.  I told her I was hungry.  She brought us some peanut butter, crackers, cheese and crackers.  I wanted to call my mom and Rick wanted to call the kids and his mom. They all needed to know.  I was going to ask my mom and dad to come and stay with the kids.  The house runs great with them there and I needed my mom and dad. They were going to come tomorrow.  I told my mom about Hannah's situation and it did not look good.  She was in critical condition.  Rick told Martin and then he told his mom. 

When we got off the phone,  I was feeling the need to pump and see Hannah.  We were told we could go in and see Hannah. We sat with Hannah and held her Hannah stroked her head and arms and legs.  We'd talk to her. The nurse (Maggie)  who was in charge of Hannah was amazing!  Hannah had her own nurse and respiratory therapist. They had to work there butts off to save Hannah about 3-4 times.  While I was pumping, Rick witnessed the nurse and respiratory therapist work so hard and calmly work to save Hannah.  Rick was amazed and impressed.  They wanted to put in a PIC line.  I had no idea what that was but they wanted us out of the room.  We left to go on a walk.  While we were walking Rick called one of his best friends, and I called my mom again.  I just needed to let her know my family needed her and my dad.  The social worker told us she'd work on a sleep room for us but don't count on it.  Ok we were ok with that. We head back to Hannah's room.  I just couldn't stand being away from her.  I was  so so so tired too.  I don't think I have slept more than 2 hours since Saturday and it is Monday night.  I was so hoping for a sleep room but we'd make due with what we had. We'd do anything to stay right near Hannah. 

As we sat in the PICU with Hannah, I just look at all the machines and tubes and wires that were hooked up to her. I'd pray and continue to hope she'd get better.  I loved Hannah so much!.  I decided to email a couple people and get out of a couple commitments as we knew we'd be here alot longer.  I stand by Hannah watch her,  talk to her, just be by her  and Rick does the same.  We decide we need some sleep. We try to sleep  on the bench in the room both of us. But it just doesn't work. Rick decided to go out to the waiting room and sleep on the chairs.  It is like 11:30pm now.  While he was sitting there a lady came in and told them we have a sleep room.  I was a bit concerned about leaving Hannah to go to a room to sleep.  They assured us that they'd page us if anything changed with Hannah. 

So we decided to go to the sleep room.  It was a twin bed. We both lay together on a twin bed.  I was so tired I feel right to sleep. God had Hannah is His arms.  We trust God would keep Hannah safe.  Oh I got a shower sometime to.  It felt so good!

Psalms 31

¹ In You, O LORD, I put my trust;
Let me never be ashamed;
Deliver me in Your righteousness.
² Bow down Your ear to me,
Deliver me speedily;
Be my rock of refuge,
A fortress of defense to save me.

³ For You are my rock and my fortress;
Therefore, for Your name’s sake,
Lead me and guide me.
⁴ Pull me out of the net which they have secretly laid for me,
For You are my strength.
⁵ Into Your hand I commit my spirit;
You have redeemed me, O LORD God of truth.

⁶ I have hated those who regard useless idols;
But I trust in the LORD.
⁷ I will be glad and rejoice in Your mercy,
For You have considered my trouble;
You have known my soul in adversities,
⁸ And have not shut me up into the hand of the enemy;
You have set my feet in a wide place.

⁹ Have mercy on me, O LORD, for I am in trouble;
My eye wastes away with grief,
Yes, my soul and my body!
¹⁰ For my life is spent with grief,
And my years with sighing;
My strength fails because of my iniquity,
And my bones waste away.
¹¹ I am a reproach among all my enemies,
But especially among my neighbors,
And am repulsive to my acquaintances;
Those who see me outside flee from me.
¹² I am forgotten like a dead man, out of mind;
I am like a broken vessel.
¹³ For I hear the slander of many;
Fear is on every side;
While they take counsel together against me,
They scheme to take away my life.

¹⁴ But as for me, I trust in You, O LORD;
I say, “You are my God.”
¹⁵ My times are in Your hand;
Deliver me from the hand of my enemies,
And from those who persecute me.
¹⁶ Make Your face shine upon Your servant;
Save me for Your mercies’ sake.
¹⁷ Do not let me be ashamed, O LORD, for I have called upon You;
Let the wicked be ashamed;
Let them be silent in the grave.
¹⁸ Let the lying lips be put to silence,
Which speak insolent things proudly and contemptuously against the righteous.

¹⁹ Oh, how great is Your goodness,
Which You have laid up for those who fear You,
Which You have prepared for those who trust in You
In the presence of the sons of men!
²⁰ You shall hide them in the secret place of Your presence
From the plots of man;
You shall keep them secretly in a pavilion
From the strife of tongues.

²¹ Blessed be the LORD,
For He has shown me His marvelous kindness in a strong city!
²² For I said in my haste,
“I am cut off from before Your eyes”;
Nevertheless You heard the voice of my supplications
When I cried out to You.

²³ Oh, love the LORD, all you His saints!
For the LORD preserves the faithful,
And fully repays the proud person.
²⁴ Be of good courage,
And He shall strengthen your heart,
All you who hope in the LORD.

Love, Sandi Kwant (Hannah's mommy)