Yesterday was a tough day for the whole family, we were planning to have Charity come home and all the orders were already written up at 8 am. When Elizabeth and the gang got to Lucile Packard Childrens hospital they went through some more training on tube feeding and then they all took Charity out for her last wagon ride, while she was out she started having a hard time breathing, later in the day her oxygen stats started dropping again, so sorry to report that she was not able to come home, yet. Elizabeth stayed at the hospital last night and she continued to have a hard time breathing through the night with a lot of visitors coming to check on her through the night. Cultures were sent out, blood was drawn and chest x-rays were taken. Also, the Ear, Nose and Throat specialist were called in again. We hope to know more information by this afternoon and evening.

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It was only a visit - just dropping by to say "thanks" and "goodbye"...

Will and I put Charity in a wagon this evening with lots of pillows and blankies and took her on a field trip around the hospital. We stopped in at the PICU where she spent nearly four weeks.  We were all able to give hugs to and greet many of those special nurses and docs who helped Charity and our family so much!  They were blessed to see Charity (who was all smiles) clapping her hands and giggling.  I'm sure it must be great to see happy endings every now and then as they work with so many sick children over the course of the month. 

It seems that all things indicate a homecoming for Charity tomorrow.  She is doing very well and improves daily.  Her tests on swallowing show that she is not swallowing at this point and therefore, feeding her orally is not an option until she regains that skill.  In the meantime I learned how to feed her through the tube and am familiarizing myself with all potential problems or emergencies associated with this.  It doesn't actually seem like it will be too hard, but I may change my tune, once I am home without a nurse call button!  Regardless we are extremely grateful to finally get to be all together as a family again.  We'll keep you posted as things progress - As always - we are truly thankful for your encouragement and prayers!!

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We got the shock of the week hearing from the doctor that they would like to send her home Thursday!  We aren't holding our breath as things can change, but we are sure excited that a homecoming is forthcoming!  To think back over the past four plus weeks, it is incredibly wonderful to realize that our little girl is indeed coming home.  She hasn't learned to eat orally yet, so we will be learning how to feed her through the n-g tube (the one down her nose into her stomach), and giving periodic breathing treatments.  Beyond that, she is good to go! 

She still has a lot of re-learning to do, to return to her pre-hospital stay status, and  it will take awhile to regain bone mass as well as muscle control.  We should know more detail tomorrow after a meeting with the therapist who will teach us how to feed her and what to do if she pulls the tube out (yikes!). 

In other news, I (Elizabeth) enjoyed a day with my four older ones at home while my folks spent the morning with Charity.  It was good to be with them and they seemed to feel the same toward me.  They are tired and a bit out of sorts, and we are grateful for your prayers on their behalf...

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     We have been blessed with nurses who are caring and understanding.  They have been wonderful helping us transition from PICU to the regular hospital floor.  Things are a bit more calm and relaxed as the children are either recovering from surgery or rehabilitating from serious illness. 

     Charity did great in her first "feeding".  She was able to taste the food and by the third bite, remembered that it is appropriate to open one's mouth when wanting to eat.  She didn't seem overly enthusiastic about oral feeding, but we are hopeful she will regain this skill during this week.  Her vitals look great and she is breathing well overall.  She still appears to have a bit of difficulty taking in breaths, but part of this is due to all of the trauma that she has undergone. 

     When you pray would you also remember our four older children.  They are tired and starting to act out in different behaviors indicating that they too feel the stress of the situation.  They are still enjoying the activity of it all, but even that can be wearing on a body!

     Ellie and I spent the morning with her, and Ellie went out of her way to read, sing to and dance for Charity.  She held a marker in Charity's hands and helped her color.  Ellie held her sister for a long time and enjoyed being a helper.  So far, Ellie is the one who can get Charity to laugh and smile most of the time.  So glad that my girls enjoyed their time together today!

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Yesterday afternoon Charity was released from the ICU and placed in a room that is for the less sick kiddos.  It was very different from our arrival to the PICU.  Upon her arrival, she was rushed in to the room and then demanded the attention of many doctors and nurses for the rest of the afternoon and much of the evening.  Our departure consisted of me carrying Charity out of the room, waving goodbye to a few nurses, and heading down the elevator until I laid her in her new bed.  Very unceremonious!  We have spent the day adjusting to our new surroundings.  The nurses are just as nice, although Charity must share them with three other patients. 

We are grateful that she improves daily, and have begun working with her to increase her strength in her neck and legs and arms.  Tomorrow will be a big day as she is to have an appointment with a therapist who will work with her on eating orally.  Until now she has been fed with a tube through her nose into her stomach.  We are hopeful she'll remember how good food tastes and want to eat and eat and eat.  She also has a visit scheduled from Carly the hospital doggie.  Big day for Charity!  Please pray that she will eat well and that her breaths per minute decrease so that she is breathing on a normal and less fast-paced leve.  Thanks so much dear friends!!!!!!!!

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Here is one of our pictures of Charities first smiles, we are so blessed to see that smile again!!

Below is a picture of our oldest daughter in the Life Flight helicoptor. She was given a tour by all the nurses and was even able to wear some flight gear. She has decided that she wants to be a transport nurse.

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It's off to work he'll go...

Will's first day back at work was today after almost four weeks of being home.  Of course, he wasn't really home all of that time!  His boss has been absolutely a blessing, letting us know that Will should take all of the time that he needed before coming back to work.  It was hard to let him go, but he is glad to be back, doing the job that he loves! 

My parents also left today for a little rest and relaxation.  They joke that they are leaving to their "vacation home" for a few days.  They will return next week to assist again with the homeschooling and laundry and child care and and and.....

Later today, when my tech guy returns home (that'd be my husband), I hope to post some pictures, since today was a big day for our hearts!  Charity couldn't stop smiling and even giggled a bit while Ellie and Harrison sang, "The Wheels on the Bus".  I had tears rolling down my cheeks since it'd been awhile since we have seen that really big smile on her face.  It's hard to describe how wonderful it was, I guess kind of like the first time she smiled as an infant...that was also pretty special...

Anyway, we are heading to the hospital again after naptime is over - me and the four kiddos...could be pretty crazy :)

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Charity has officially been weaned off of her continual morphine drip!  She is still receiving morphine and versed on occasion to help her with pain and discomfort, but the reliance on continual medication seems to be mostly gone.  She has had very little withdrawal these past couple of days.  We were all able to hold her today, and as a result, she was in somebody's arms a good part of the day.  We are trying to spend more time with her as she "wakes up" and becomes more alert. 

Her body is extremely weak and we are told that it will be a slow road back for her as she needs to relearn certain skills in addition to regaining muscle strength.  Right now she can't hold her head up at all, and isn't doing much facial expression other than lifting the eyelids.  She was kicking around with her feet when we left her this evening. We are hopeful that tomorrow she will be more expressive and perhaps begin using her arms.  We read books to her today and sang her favorite songs, even blew bubbles and brought her favorite musical turtle toy!  She seems to enjoy these things and we're thankful to have had opportunity to enjoy her today!

The doctor has also told us, that as soon as a bed opens up Charity will be moved out of the ICU - so we expect in the next day or so to move from the 2nd floor PICU up to the 3rd floor "less sick kid" area.  Hard to believe that we have come this far in just over 3 weeks time!  We are truly grateful...

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Before we could get to Charity's room this morning, one of her doctors came running excitedly to us, beaming and exclaiming, "Have you seen her yet, have you been in the room?" Needless to say, we picked up the pace.  There she was with no oxygen canula in the nose anymore.  Sitting pretty and content breathing all by herself!  We've come a long way for sure!!! 

She is still being monitored on food and how it moves through her body - they are checking to see if her food ends up in her lungs or not.  And, we only have a little bit of morphine left to wean down from. 

We met with an occupational therapist who will help with Charity's lack of muscle tone.  She is not able to hold her head up, and has limited movement so far.  We hope that once the medication wears off, she will quickly regain her muscles and get back to where she had been.  Such an amazing journey it has been, and we are so very thankful for your love and prayer for us...

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This afternoon I think the stress of it all finally caught up with me.  I either had a little flu bug or just a bad tummy ache.  Either way,  my parents drove me and the kids home, while I battled a very sick tummy.  I am feeling better, a little tired, but better.  Will got to be at the hospital with Charity this evening, which is always fun for him. 

Apparently they are going to attempt to remove her oxygen (nose canula) during the night to see if she will breathe the room air while keeping up her saturation levels.  She has apparently done well during trials at daytime, so hopefully when we arrive tomorrow we will see her face minus any sort of apparatus.  She is down more on her morphine, which makes us jump for joy!  Closer to home everyday!!

The highlight for Will was playing peek-a-boo with Charity.  He lifted her blanket up and put it down, pausing only as she lifted her hand by herself and placed it on his hand.  What complete surprise...she is beginning to respond more and more as her sedation meds wear off!  We can't  contain ourselves over here - can you hear us jumping up and down?

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Charity is still a bit dazed - possibly confused?  The morphine drip is being lowered each day, so that by Friday she should be completely weaned.  We are hopeful that no further sedation will be necessary.  She was alert with wide eyes when we arrived this morning.  Harrison sang and Will kissed her all over.  Grandpa and Grandma have taken over homeschooling the older three so that Will and I could go to the hospital together the past few mornings.  Today, instead of a walk around the block, they played in their little pool and for lunch they hit McDonalds.  All in all a pretty fabulous morning!

We truly are standing over here in amazement at how well Charity is doing - should we really be amazed?  I hardly think so, with all of your love and prayers, we should actually be surprised if she didn't fully recover...today was her trachea procedure, and not only did she do exceedingly well breathing through the entire thing, everything looked beautiful inside.  She still has a thinner airway, which potentially could require surgery at a later date, but the doctor seemed to think she would be fine now that things have had a chance to heal.  He will see her post - hospital to take another peek and see how things look. 

Truly the only real hurdle left, is making sure that her food is not leaking into her lungs.  She has had some trouble with that this past week, and if after receiving food again today, the x-rays reveal anymore leakage, we'll figure out how to deal with that issue next.  Not totally sure what it means, but we'll cross that bridge tomorrow. 

 Today, she is cuter than ever, and our hearts are glad!

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Charity had another great day!  The echo cardiogram showed that the blood clot was no longer there - we are hoping that it stays gone and that it didn't simply hide.  Because of this, she is no longer taking the blood-thinning medication...good news for her!  She was very lethargic and dopey today, but she was pretty doggone cute!  Charity's nurse had put on a new nightie and braided her hair when we arrived this afternoon.  She is breathing very well and is keeping her saturation at 100 most of the time.  Her nurses keep mentioning the big move out of ICU - so we know that is not too far off now...

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Three weeks ago today - Charity began her hospital journey.  It would have been unbelievable if anyone had told me what these days would hold, but looking back, it is easy to see how completely faithful God has been. 

When we walked in this morning, it was with great delight that we saw Charity's entire face!  She now has the mask off with only a nasal canula blowing oxygen into her nose.  She is adorable!  Her morphine has been turned down a bit more today and most of the other medications have been discontinued.  She appears a bit dazed, but her eyes definitely focused on our faces, and she particularly responded to Will's voice by raising her eyebrows.  We tried holding her, but she became quite agitated.  Even though it is disappointing, we are delighted that she looks so much better.  Some of her former nurses came by through the morning to enjoy seeing Charity awake and content.  We hope that by the end of the week, she will be on less oxygen and perhaps no morphine. 

Tomorrow will be a big morning for her as she undergoes the exploratory surgery to determine whether she needs further surgery to fix her trachea.  At this point it's hard to guess whether she will or not!  She continues to have fluid in her lungs, but not an alarming amount, and we are hopeful that her blood clots will disappear soon.  She has overcome many things, and we are confident that it is because you have prayed for her.  God is a good God and thus far He has chosen to spare Charity's life - He is to be glorified!

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It has been a very full day for all of us.  Will was being dad, mom, housekeeper, and meal planner while I stayed with Charity most of today.  He did a great job - everyone was in bed, and the house was clean.  I assume that they were fed and that Harrison finally got new clothes after wearing the same thing for two days :)  Somehow that one slipped - I realized at church that he was wearing the clothes he had worn yesterday and slept in last night. 

Chloe spent the afternoon with me, and got to go on a special field trip.  One of the nurses is a transport nurse, which means that he goes via ambulance or helicopter to bring patients to Lucile Packard.  Since the helicopter was back from transport, he invited Chloe up to the rooftop to see the helicopter and learn about being a transport nurse.  She has decided that she is definitely going to nursing school.  We both enjoyed learning all about the exciting life of a lifeflight nurse.  The highlight was sitting inside the helicopter and watching Chloe try on the gear. 

Charity is doing beautifully.  She was much less agitated today and rested well in the afternoon.  Both Chloe and I got to hold her a bit.  Lots of friends came by to marvel at how wonderful she looks.  There isn't really any big news, just keeping her happy at this point, and trying to reduce meds slowly but surely.  Thanks for praying for us all!

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How absolutely blissful...to hold that little girl of mine today! 

She was hooked up still to lots of lines and tubes and other goodies, but she was in my arms :)  The last time I held her was not too long before she had her first cardiac arrest.  I am sure those of you who have watched your children suffer, know what I mean when I say that it is pure torture to stand by and not be able to pick up and hold that little one, while singing or whispering little "mommy things" in their ear, especially while watching that one cry or experience great trauma. 

Charity continues to battle the withdrawal of the variety of narcotics that she has been given.  But, she did relax and sleep in between the periodic spasms that showed just how tightly drugs can hold a little body.  Bless her heart, she was uncomfortable, but it was oh so wonderful for me to hold her to myself and rock her until the worst of it had passed and she could rest for a bit. 

The doctors and nurses are happy with her progress as her breathing is wonderful and she continues to keep the levels of oxygen in her blood high.  She is not without many challenges ahead, but it was good to be with her today and feel those now familiar tears on my face, knowing this time, they were from a heart of joy!

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Charity is still without a breathing tube this morning, but she is having strong withdrawls from the drugs that she has been on for a couple of weeks, her heart rate and blood pressure continue to be high and she is starting to build up some additional fluid in her lungs. They were considering putting a breathing tube back in to try and suction her out again, but that would require some more medication. We did hear from mom who is at the hospital with Charity this morning that she might get a chance to hold our little treasure today, we pray that is the case since there is a whole group that just want to love on her a lot...we are all having Charity withdrawls, even at night or house has become too quiet!!

Please be praying for the fluid in her lungs to go away, that Charity would continue to breathe on her own and that God would give her the strength to overcome the drugs that her body has become used to. Also, please pray that mom would get a chance today to hold our princess as well as for all our doctors and nurses that look over our little one.

As always, thank you for all your prayers, words of encouragement and hugs.

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The great news for today is that Charity is officially ex-tubated.  She is no longer on the ventilator and is doing her own breathing.  We think it is very cool that she happens to be receiving helium along with her oxygen, and we hope she sounds like minnie mouse when she starts talking again...

The whole process was very speedy, and she did wonderfully the entire time.  Chloe and I watched from the sidelines as the tube came out, the nose canula and face mask went on, and lo and behold Charity took it from there. 

She is so beautiful to see, the little body that has endured so much is off life support of any kind this evening!!!!!!!  The next 24 hours will be a big time of testing for Charity.  She will need to continue using her own muscles in order to remain "tubeless" 

The not so good news is that there has been a second blood clot detected.  This one lies on or near her neck.  Being this close to her brain is obviously not a good thing, and we are waiting to find out what the next course of action will be.  This blood clot may have been present for a long time, or it may be new.  Either way, she may need an operation to remove it, or she may just continue to be on blood thinner medicine.  She still very likely will need additional surgery to correct her throat and breathing area.  but this will probably be another day or so. 

When you pray, would you also pray for Charity's withdrawal from the heavy narcotics.  She has been on several different addictive drugs - like morphine for almost three weeks and now that things are being turned down - in order to get her to use her muscles- she is having major withdrawal symptoms.  It seems that this is a common thing, and though we don't like seeing it, the nurses are very understanding and helping in any way they can.  The decision to wean her a little more slowly was made earlier. 

It has been a long day, but praise God we have come a long way.  She is so absolutely precious and delightful to see.  We so appreciate the prayers on her behalf....

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Pardon me for this interruption in the regularly scheduled blog updates, but I felt compelled as I thought about everything, to give a little background about Charity.  Our family adopted sweet Charity when she was a newborn.  We had felt the Lord's prompting after reading an article about an organization called CHASK, about three years before Charity was born.  This wonderful group of people have dedicated themselves to finding homes for ANY child.  They want birth families to know that there are plenty of families who are willing to adopt a child with severe to minor special needs.  Over the three years we were called with several "opportunities" to adopt, yet none worked out for one reason or another. 

Then, one morning after a particularly moving prayer time with the children, during which they specifically asked the Lord for a sister, the phone rang and suddenly life was a blur as we scurried around to get things in order.  Charity's birth mother had chosen an adoptive family, but when they learned that she had Down Syndrome at birth, they simply left the hospital, without saying goodbye.  Her mom was devastated and called CHASK.  Since she was born not too far from our home, we were called, and boy were we ready and willing. 

I'll never forget going to the hospital the first time and seeing the little pink body with loads of dark hair on her head, wondering, "are they really going to let me take her home?"  I am sure the nursing staff was wondering also, as they observed my four other children in tow.  The nurses made an exception, even though Charity was in ICU, and let us all have a moment to hold and touch Charity.  We were smitten!  Never for a moment, has it made a bit of difference to our family whether or not Charity was birthed by me or not.  She has been loved and treasured

All this to say, if you or someone you know is at all interested in adopting a child with special needs or with Down Syndrome specifically, here is the website for CHASK to look at for further info.  If we had it to do over again and the opportunity to adopt presented itself...we'd say YES a million times...

www.chask.org

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We have thoroughly enjoyed the rest time of the past few days.  While Charity has been recovering from surgery and has been highly sedated she has been peaceful and calm.  Today was a different story.

We found out when we arrived that Charity has been running a high temperature through the night and morning.  She has been given tylenol which isn't helping and while suctioning her lungs, they found lots of icky white secretions.  Not a good sign.  The doctors aren't sure why this is suddenly appearing, along with the fever and much much more labored breathing.  She looks like she is gasping for air, although her vitals are OK.  Her heart rate is very high and blood pressure is a bit higher too.  They are also now concerned that she may have additional blood clots in her neck area.  Today's ultrasound should give a better indication of whether this is the case. 

The whole thing seemed a bit overwhelming and confusing as there was so much new information and it all seemed like it had happened suddenly.  Charity was fully awake when we arrived, but she wasn't able to focus on our faces too much.  She seems to be rapidly looking around, wondering where she is.  Of course, this is so difficult to see, and at this point she won't be going off the ventilator.  I think that the doctors feel that there is an urgency to take the tubes out so that they can get a clearer picture of what is going on, but there is a danger in doing so before she is ready.  We are praying for wisdom for the doctors and nurses.  We are praying for a continual trust in the Great Physician, since He knows Charity better than any of us and He understands what she needs most of all...

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We definitely look forward to seeing Charity come off of her ventilator this week. But we won't be holding our breath :)  Originally the goal was Thursday, but that doesn't seem too likely now.  She didn't tolerate the "turning down" yesterday as much, but the nurses are trying again today to keep letting her breathe more and more on her own.  She is waking up more, and her sedation medication will be changing slightly.  The goal is to get her to stay calm - so that she doesn't remove her breathing tube with her toes but not receive too heavy dose of sedation.  

The sores all over her body are healing, and she apparently received another "spa treatment" last evening - that is helping those owies get better. 

Some of our children are getting the sniffles so we are keeping half home and half at the hospital with either myself or Will.  We are hopeful that everyone won't get sick, since we all can't wait to see this little lady without tape on her face, not to mention hold her every minute of every day - look out Charity - here comes your family!!!!!

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