The Last Few Hours: Day 64 (2/8/11)

This picture was taken by Martin with his cell phone

Another cell phone picture! I did not take any pictures of Hannah in the PICU.  It broke my heart to see her like that and I did not want to remember her that way.  I will never forgot her time in the PICU!

The Last Few Hours

We were sleeping so soundly in the sleep rooms provided by Children's for parents of kids in the ICU units of Children's.  Suddenly, we got awakened by the loud sound of the pagers.  Oh man this does not look good.  We had only been in the room for about an hour and a half!  We rush out of the sleep room as quickly as we could go.  We put our clothes on and we leave nothing in the room.  We just didn't know if we'd be back. 

We rush to floor 3. The check in desk excepted us to arrive and they let us right into the PICU unit where Hannah's room was.  There were several nurses and doctors and respiratory therapists in her room.  It looked like Hannah was getting alot of care and very good attention.  The head doctor comes straight over to us.  He did not beat around the bush he said it straight up.  He said, "Hannah is in very critical condition. Her heart rate dropped again and we were barely able to save her this time.  If her heart rate drops again.  We will lose her on the table.  You can decide to hold her if you want and let her pass in your arms."  I was numb. I was shocked. How can we just give up on our baby?  How can we let our baby go?  What my mind could not think.  I'm not ready. I want my baby fixed so we can take her home!  What she had could not be fixed.  The only way she can get fixed is her going to heaven. She will be whole and complete there. 

Rick and I were allowed to go by Hannah's bed side.  We stood there talking to her,  we focused 100% of our attention on our baby.  We just loved her. We watched the nurses a bit but not much.  We wanted very minute we could with Hannah.  I was not ready to let her go. But then I was afraid to have her die on the table too.  I was torn inside.  I was crying out to God!  Rick and I needed each other and God.  It was in the middle of the night we did not call anyone,  we just focused on Hannah.  She was doing great laying there with no heart rate drops.  Finally, Maggie Hannah's awesome nurse decided to go for lunch.  She actually skipped her lunch earlier as Hannah was so unstable.  Maggie only took a very short lunch. She knew Hannah may need her.  I think we had the best nurse in the hospital attending to Hannah.  She was focused on my baby.  The nurse that came in while Maggie was a lunch for a bit. She was compassionate.  I think they brought her in to help us as we had to let Hannah go somehow.  I forget her name.  But I loved how she talked about Hannah.  She loved Hannah.  We could feel that.  I don't know but 3 hours went by quickly. 

Finally, I quietly told Rick, I was ready to let Hannah go.  I just didn't want her to die on the table I wanted her in my arms.  Rick was not ready yet.  He needed more time.  I was ok.  I just wanted Hannah in my arms too.  I missed having her in my arms.  For 64 days I had Hannah always in my arms.  Now she is on the crib all hooked up to all kinds of crazy life-saving things.  Her face didn't look right.  Her kidneys were not working and she was looking bloated.  Her lips were all tied up with the breathing tube.  Her arms and legs had monitors and IV's connected to her.  She had a central line put in.  I did not take any pictures and the pictures in my mind still make me cry. I did not want to have the kids know how Hannah looked here at the end and I did not want to remember it but I probably will not forget it. 

It took Rick and I a long while to tell the nurse we were ready to hold her while she went to Jesus.  All the nurses and doctors were supportive.  They worked so hard to save it and it hurts them so much to lose a child.  We really had no choice, Hannah's lungs and heart just were not working together correctly and there was nothing we or the doctors could do.  I had peace that we did everything we could to save her. We made sure the doctors and nurses knew we valued her life even though the world saw her as less than perfect.  We saw her as perfect just as God had ordained from the beginning.  The kind and compassionate nurse who was with Hannah constantly while the Maggie the most excellent nurse went to lunch,  she started talking to us as she took off the tubes and cords that were not necessary.  She constantly told us how special Hannah was and how much we loved her and how sweet she was.  We stayed by Hannah's side during this time of transition as the cords and what not were taken off.  The only thing that remained was her breathing tube at the end.  The nurse took like a half hour to slowly and kindly and respectfully take the stuff off Hannah.  I was so thankful for her kindness and respect toward Hannah, Rick and I. 

The nurses and doctors kindly let us sit with Hannah for over an hour. Crying so much talking with Hannah.  touching her face, arms, legs, toes.  and whatever place we could.  Rick wanted to hold her by himself for a bit.  I handed her over to him.  He needed to have her in his arms too.  It was so neat to me to see my husband be so tender to her. He loved her so much!  The doctor came in to check Hannah's heart, he needed to so he could write down the time of death on his paperwork. He was kind gentle and respectful as he did this.   We were allowed to sit with Hannah in our arms as long as we needed to. The nurse would check on us once in a while. She told us when we were ready we could give Hannah a bath and put clothes on her and wrap her in a blanket.  I had no idea that this is something I could do now for Hannah.   We still continued to hold Hannah, I did not want to let her go.  I wanted my baby in my arms.  We cried.  It was so hard!  Finally, we were ready to wash Hannah up and then cloth her.  The nurse got all the stuff ready for us to give her a bath.  I gave Hannah a sponge bath. It was weird as I knew Hannah's spirit was not there anymore.  She was in heaven and not here on earth anymore.  There was another nurse who wanted to make a couple memory items of Hannah's feet.  She made an ornament with Hannah's feet prints.  They also made a mold of Hannah's feet.  She the picture below. 

I will continue this post as we leave the hospital. And explain how hard leaving was! 

Ephesians 2:5-7

⁵ even when we were dead in trespasses, made us alive together with Christ (by grace you have been saved), ⁶ and raised us up together, and made us sit together in the heavenly places in Christ Jesus, ⁷ that in the ages to come He might show the exceeding riches of His grace in His kindness toward us in Christ Jesus.

Love, Sandi Kwant (Hannah's mommy)

Thriving Trisomy Children to Pray For:

 Caitlyn, She just turned 3. She has a trach and I got to meet her!  She is extra special.  I hope to go visit her this year.
Update:  Caitlyn went to be with Jesus 2/6/2012 my heart hurts for her family.

 Daniel has Trisomy 13.  He is going to be having surgery soon.  He has a twin.

 Lane is 3 years old.  His mommy is really good at promoting and helping others understand Trisomy 18.  He is doing well. 

 Lilliana is 8 months old.  She was able to get her heart fixed and she is thriving and gaining weight! 

Sophia is doing well.  She has mosiac Trisomy 18. (which only part of her cells have trisomy 18 and the other half are normal). 

I check up on these children every week. I pray for them daily.  I am excited for each new week for them.  There are alot more children to share these are only a few.  I met their mommies on Facebook;s Trisomy mommies group. 

Sandi Kwant 

Hannah's Angel Friends

Here are some of Hannah's Trisomy Friends who also are in heaven with her. These are only a few of the children. 

 Sophee

 Nolan

 Bella

Nalah

Lilly

Emalee

Elizabeth

Caitlyn

Each of these children are very special and their families miss them so much.  We know they are much happier in heaven but we sure miss them!   What a bunch of cute kids.  These are only a few of the children.  I just have a special connection with these childrens' mommies. 

Each one of these children are special to me as they were born around or passed away arouund Hananh's time.  I got alot of support from these Trisomy mommies!  They understand my pain and I understand their pain.  We can lean on each other and we can support and encourage each other.  I get messages from these ladies just checking to see how I'm doing.  I check on them too!  What comfort!

Pslams 139: 14

¹⁴ I will praise You, for I am fearfully and wonderfully made;^[b]
Marvelous are Your works,
And that my soul knows very well.

Love, Sandi (Hannah's mommy)

Kwant Clan Crafts

Cassie loves doing crafts and sewing.  I suggested she try to sell some on Etsy.  I helped her get her Esty site going and then I helped her get a Kwant Clan Crafts blog going. She is super excited. 

Here is a link to her blog:

http://kwantclancrafts.blogspot.com/

Project Display Night by Heidi

This is my project I made in memory of Hannah for our Project Display Night for our homeschool co-op.

I put all our specal Hannah things we had at the time. And it has some stories I wrote for Hannah.

by Heidi (Hannah's sister)

Cassie and Hannah Grace

The day Hannah came home

                                            This one is Heidi's. Heidi's favorite color is yellow 

this one is Terri's the loves them so much you can see the glitter glue on this one Terri told me that she wanted sparkles on it because Hannah loved sparkles

This is Terri's too

This one is mine

    

This one are mine too

This one is mom's

This one i made for my cousin Lydia

These are most all of the flowers i made

                                                           

                                     With Love Cassie (Hannah's oldest sister)

A Very Neat Post on Special Need Children *Must Read*

Here is Lilly!  Cassie made the blanket that Lily is laying on.  Lilly just recently went to be with Jesus.  I would follow Lilly's blog because I loved how Lilly's mommy included Lilly in the family and family activites.  I could see Lilly was so loved.  I loved each post had a bible verse.  I just knew I would have taken care of Hananh just like Lily's mommy!  Lilly was very special to my heart.  I'd pray for her everyday.  Now that Lilly is in heaven with Hannah.  I feel like Lilly's family has a speical place in my heart still.  I want to share a very neat blog post by Lilly's mommy.  It is about special need children.  The world sees them as a burden but I never saw Hannah as a burden and neither did Lilly's family.  I hope you enjoy reading this blog post by Lilly's mommy!

Click Here: http://pray4lilly.blogspot.com/2012/01/special-needs-children-are-special-even.html?spref=fb


Psalms 139: 13-16
 ¹³ For You formed my inward parts;
You covered me in my mother’s womb.
¹⁴ I will praise You, for I am fearfully and wonderfully made;^[b]
Marvelous are Your works,
And that my soul knows very well.
¹⁵ My frame was not hidden from You,
When I was made in secret,
And skillfully wrought in the lowest parts of the earth.
¹⁶ Your eyes saw my substance, being yet unformed.
And in Your book they all were written,
The days fashioned for me,
When as yet there were none of them. 

Love, Sandi Kwant (Hannah's mommy)

More Ways We Remember Hannah!

The kids made a Build A Bear Hannah Bear. 

My Hannah locket

Hannah in the locket

Terri Lynn drew on the white board.  She told what she drew.  Hannah and Jesus, it was so sweet!

Here is a close up!

Valerie's play dough creation.  It says "I love Hannah!"

Heidi made this collage.  I framed it. 

Another collage by Heidi.  I framed it too!

Rick's sister made this one for us!

Valerie made this collage and I framed it.  It is in our bathroom so when we go out the bathroom.  We see Hannah!

The girls have put pictures on there walls of Hannah.  I let them.

We made a rag quilt using most of Hannah's blankies she used.  I have the blanket on my bed.  I use it every night.

Cassie made the skirt, pants, head bands.  and Embroired the jacket "Little Miracle" so we put it in a shadow box. This is hanging in our living room.

Until we can get the grave stone ordered and done to put at Hannah's grave.  Rick made this board and the girls painted it.  It looks so neat at Hannah's grave.

Valerie made this and it is hanging up some where in the house.

Here is Martin and the sign he  made and put extra special care into it. 

Valerie's note to Hannah: I love you  so so so so so ...............much!

Hannah Bear.  Terri Lynn really likes playing with this bear.

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)

♥Cassie and Hannah Grace♥

Hannah and I

This is my project display I did it on Trisomy 18

My project display.

In memory of Hannah Grace.

This is with it all set up at Friday school.

These are the stories That are on  my display.  

                              Trisomy 18

                              By Cassie Kwant  

It is also known as Edward syndrome. It is a condition caused by having one extra chromosome on your 18 one .it occurs in about 1 out of every 3,000 babies. 50% of babies are still born. The baby boys have a higher still born rate than baby girls do. Which means that the girls do better with this condition that the boys do. When babies with this condition are born most babies are admitted to the NICU (neonatal intensive care unit) babies with higher birth weight will do better. Than ones with low birth weight. A lot of the time they have trouble gaining weight.  

     

                                    Trisomy 18

                                 By Cassie kwant

 Babies that have Trisomy 18 (the Dr. Say) live an average of six days. Ten % of them live to be a year old. One of the troubles that the babies have is breathing trouble most babies have to have a canula in there nose which helps them breath easier. The canula is hooked up to an air tank another problem that they have is feeding. Usually they are not strong enough to suck hard. And some times they will aspirate the milk. That means them milk goes down the wrong tube. So a nurse can put an NG tube down the babies nose to reach the stomach to make sure that the tube reaches there stomach 1^st you have to measure from the tip of there nose 2^nd to the tip of there ear 3^rd down to the nipple line. How ever many centimeters that it comes out to that is how far you put it in.            

                                      Hannah Grace

                                                         By Cassie

Hannah Grace is my little sister she has Trisomy 18. When she was born she weighted 4lbs 11oz. Babies with T18 are born small. When she was born she went in the NICU for only a week. She was not strong enough to suck so she had an NG tube put in to feed her. We were working on feeding therapy to help her to be able to feed by mouth. And make sure that she did not have trouble aspirating. Because a lot of babies with T18 do aspirate. She had some unique features that came from Trisomy 18 on her right hand her fingers were crossed. And on her left hand her pointer finger was crossed and she couldn’t bend it all of the way. So we call it the hook finger when she lifted it up. Because that is what it looked like. Her ears where placed a little bit lower that normal. And also the back of her head was a little pointed. And there was a little hole in my heart. The last few days she had trouble with pulmonary hypertension. That is when her lungs where not working right. And they where not cleansing the blood so she had high co2 levels in her blood.     

The dr. said to my parents before Hannah was born that Hannah would not live past birth. And if she did she would live an average of 6 days. But she lived longer that that she lived 64 wondrous days with us.    

What are the characteristics of Trisomy 18?
The genetic material from the extra eighteenth chromosome can cause a variety of problems with varying severity. Mildly to severely affected. This means that there is no hard and fast rule about what Trisomy 18 will mean for your child. However, information on Trisomy 18 shows that there is a high mortality rate for children with Trisomy 18 before or shortly after birth.
Typical characteristics of Trisomy 18 include:

• Heart defects:
• Kidney problems
• Part of the intestinal tract is outside the stomach (omphalocele)
• The esophagus doesn’t connect to the stomach (esophageal artesia)
• Excess amniotic fluid (polyhydramnios)
• Clenched hands
• Fingers crossed over one another 
• Pocket of fluid on the brain (choroid plexus cysts)
• Rocker bottom feet
• Delayed growth
• Small jaw (mycrognathia)
• Small head (microcephaly)
• Small neck 
• Low-set ears
• Strawberry-shaped head
• Severe developmental delays
• Umbilical or inguinal hernia

                 

                           With Love Cassie (Hannah's oldest sister)