Kayleigh

the memorial videos of Kayleigh are up. She is a beautiful baby girl, who fought as hard as she could, but God knew that her work on Earth had been done. So, goodbye for now and thank you for all the lives you have touched. We will see you when we all get to Heaven.

http://kayleighannefreeman.blogspot.com/

The Lord is with me... us

Before I begin, Dakota is need lots of prayers tonight. She's back in the PICU and on a vent and sedated. Tomorrow is Kayleigh's funeral/memorial service. For those unable to attend (it's in North Carolina) the family is asking that at 4pm, where ever you are that you release pink balloons into the sky to float away, and on the balloons please write the following:
On Sunday (May 17th), at 4:00PM(EST) after the memorial, we will be letting off pink balloons in Kayleigh's name. Tied to each balloon will be a card that reads:

Kayleigh Anne Freeman

Our One Pound Miracle from God

(6/23/08 - 5/11/09)

www.KayleighAnneFreeman.blogspot.com

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On to me. The past 48 hrs have indescribable. Thursday I remember not feeling well that day and I was "taking it easy" and had taken a nap. After waking up, I went into my kitchen to get something to eat. All of a sudden I felt very faint, I remember trying to get into the living room to sit, but didn't make it. I fainted and fell face first on to my tiled floors. I blacked out, and came to about 5 min. later. When I came to I realized I was laying in a pool of blood. I had hit my teeth and bit my lip in the fall. I laid there for a few mins to come to and see if anything was broken and if I could stand up. I got up, found my phone and called 911. The paramedics came and when they took my blood pressure it was in the low 80's (not good). They loaded me into the ambulance and off we went to the hospital. On the ride over, I called my pastor and he met me at the hospital. I also called one of my aunt's ( my mom is out of town taking care of another one of her sister's who is sick and can't be left alone). My aunt arrived shortly after I did. I had 25 x-rays done and 2 CAT scans, they could find nothing wrong. My BP never got above 100 ( still not good), but they let me go home anyways. Other than being sore and bruised, I had no other injuries. But, they also never determined why I fainted. Thursday night, I spent the night and another one of my aunt's houses, so I wouldn't be alone if something happened. I spent all of Friday morning resting at my grandmother's house ( my aunt took her to the Dr). When my aunt brought my grandmother back home, she took me back to my house.

I was not back to 100% normal on Friday. I had only been home for about a hour Friday afternoon, when 2 things happened. One, I was flushing my feeding tube ( a new one that was put in last week) and while flushing it, it broke in half and slid out. (that wasn't suppose to happen). After the tube came out, I had another fainting spell. This time I didn't fall, because I was sitting in a chair, but I did black out. Because the tube came out I only had a 1-2 hour window to put a new one in, before the hole would start to close. Knowing I couldn't drive, I called 911 again, and got another ride to the ER. This time my BP was all over the place. It would drop into the 80's or spike into the 150's ( not good either). I had more tests done, labs taken, etc, but the Dr.'s still could find no reason for my fainting spells. My tube was a whole different story. Because too much time had passed, almost 5 hrs, the hole was already closed (or so I thought). At 10pm the radiology team came and got me and took me to radiology and tried to put a new, smaller, the 1st size tube in. I was awake, but also fully sedated. The surgery was a success on the 1st try and I didn't think that it would be, and we would have to go the long way (open surgery) to put it back in. I was released at midnight to my aunt, who brought me home, and I've been home alone ever since.

I have been fine today, but have slept most of the day. I am sore from surgery and my fall. I have an appt. first thing Monday morning with my reg. Dr. to see if she/ we can figure out what is going on. This sort of thing has NEVER happened before, so we are quite confused. This morning 2 of my aunts, 1 uncle, and my grandmother left to go on vacation to New Mexico. My mom is still out of town, taking care of her sister, and God is taking care of me today.

But, I want to say that all of last night I was in constant communication (texting) with the members of my Community Group, and although they could not be with me physically, I knew that they were praying for me constantly. I had one member from my group who visited for about a hour, but the rest of the members were VERY supportive of me. I thank God for them and what they did for me last night. I have gotten several e-mails and texts from them today checking in on me too.

I had a little bit of "free" time right before my surgery and I was really freaking out, so I pulled out my Bible and started reading scripture. I started reading the 23rd Psalm, but then I found this passage:

Psalm 91: 14-16

"Because he loves me," says the Lord, "I will rescue him; I will protect him, for he acknowledges my name. He will call upon me, and I will answer him; I will be with him in trouble, I will deliver him and honor him. With long life will I satisfy him and show him my salvation."

I started reading it and praying it, and I felt this intense peace about my surgery, as I was in the room and being prepped.

I have learned or re-learned that the LORD is ALWAYS with us. The verse above says it all. So many times I think that we get too busy in our lives and when something goes wrong we think that the Lord has left us. But that is far from the truth. In our weakest times and moments, that is when Christ is at HIS strongest. And all we have to do is ask. Not even that, just believe that God is always with us and He never leaves us or forsakes us. He promises us that.

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Please keep me in your prayers. Pray that the Dr.'s can figure out what is going on and what is causing my health problems. My mom comes home tomorrow. My appt is Monday morning.

Please keep Dakota and Kayleigh's family in your prayers as well.

God is BIGGER than me and all of us.

Today has been a long, trying, exhausting day. Lots of prayers, questions for God, praises to God, and no answers.

I have spent most of this year battaling illnesses, sickness, and bad health for myself. But then when you throw in Stellan, Dakota, Kayleigh, and the other babies I have been following, and fallen in love with, it stirs the pot.

How can a God, one who loves each of every one of HIS children, give and take away life at free will? How can we as humans, but also HIS children pray and pray until we are prayed out? How can we join millions of Christians around the world pray for babies, and others that are sick, and still watch God take some home to Heaven, leave some on earth to suffer and fight for their lives, and let others get sicker and put Dr.'s in their lives who can't do anything.



I have been learning these past few weeks how to pray scripture. How to use scripture when I pray. So, because of this, I have been scouring the Bible for my favorite verses. The following are some of the verses that I have been praying.



Psalms 91: 14-16


"Because he loves me," says the Lord, "I will rescue him; I will protect him, for he acknowledges my name. He will call upon me, and I will answer him; I will be with him in trouble, I will deliver him and honor him. With long life will I satisfy him and show him my salvation."



Zephaniah 3: 17



" The LORD our God is with you, HE is mighty to save. He will take great delight in you, HE will quiet you with HIS love, HE will rejoice over you with singing."



John 9:3



"Neither this man nor his parents sinned," said Jesus, "but this happened so that the work of God might be displayed in his life.

2 Corinthians 12: 7-10 ( The Message)

"Because of the extravagance of those revelations,
and so I wouldn't get a big head,
I was given the gift of a handicap to keep me in constant touch with my limitations.
Satan's angel did his best to get me down;
What he in fact did was push me to my knees.
No danger then of walking around high and mighty!
At first I didn't think of it as a gift, and begged God to remove it.
Three times I did that, and then HE told me,
"My grace is enough; it's all you need.
My strength comes into its own in your weakness."
Once I heard that, I was glad to let it happen.
I quit focusing on the handicap and began appreciating the gift.
It was a case of Christ's strength moving in on my weakness.
Now I take limitations in stride, and with good cheer,
these limitations that cut me down to size—abuse, accidents, opposition, bad breaks.
I just let Christ take over!
And so the weaker I get, the stronger I become."

Kayleigh Anne Freeman

I got an e-mail this morning that Kayleigh had passed away last night.
For those who don't read my blog, I have talked about her many times these past few months. For those that do read it, you know how much she meant to me and to everyone in "Blogland", how hard she has battled these past 11 months, and how happy her family was that she was doing so well, only to hit another stone wall 3 weeks ago.
Kayleigh had 1 last surgery 3 weeks ago. One that was the final hurdle in her journey to go home. Sometime during or shortly after her surgery her brain was deprived of O2 and blood, and she was found to be brain dead.
After everything that has happened, her parents NEVER gave up hope. This past week, they had come to the realization that even though her body was on Earth, her mind and spirit was already in Heaven, praising her Creator.
Last night, she was finally able to take her final breaths and completly join Jesus.
Please join me in praying for the Freeman Family today. They have 2 older kids at home, and although losing a baby is always hard, I think it's harder on the older siblings who don't know as much.

If her page gets overwhelmed, it will either shut down, or take FOREVER to load. If you would like you can leave a condolence note on my page, I will make sure that it gets to her father.

Monday Updates

I have REALLY GOOD news, really BAD news, and "Is it Over yet" news.

I'll start with the good. Stellan was discharged from the hospital this morning and will be returning home TOMORROW!!! His heart is better, he is looking and feeling better and boy does his mom want to be home.
Bad news, Dakota has taken a turn for the worse. All I know is the she has a really HIGH fever, her BP is all over the place, and she has several infections she is trying to fight. She was moved from her regular room to the PICU this afternoon.

IIOY - I made another trip to the ER last night. Had 1 test ran, loaded up on pain meds, and was sent home. I have an appt. with MY GI Dr. TOMORROW afternoon. Things will be said/ done at this appt. that will change my life. I won't leave unless this happens. The Dr. may have given up on me, but I have not given up on me. Pray that things go well and I get answers, and if not those than the help that I need NOW.

Please also take time to visit Kayleigh & Gavin's links to the left of this post. They are both need extra prayers this week. For Kayleigh, as she fights to live. For Gavin as he fights his disease and subsquent hospitalizations.
Tricia is at home and doing better.

Updates and prayers.. many of each.

Two posts in one day, wow.

First off, Kayleigh is holding her own.
It appears that sometime during or shortly after her surgery last week that her brain had lack of blood and oxygen. But, again it's too early to tell. The good news is that she is coming down on her breathing settings (she's on a trach.), but since the surgery she is NOT breathing on her own. She is no longer on pain meds, her bp is normal, and her oxygen stats are on room temp. She has "woken" up, and moved around, but she has a blank stare and repetive movements that are consistent with being brain dead and a sign that something is very wrong. Her parents are asking for some additional tests to be done to see if there is anything that can be done to "fix" her or to find out what went wrong.
Please continue to keep this family in your prayers.

Secondly, I realized this afternoon that I didn't update about Stellan's surgery yesterday. He was the reason I didn't sleep night before last. I was awake praying and worrying all night. But, Stellan made it through the almost 5 hr. (suppose to be 3hr) surgery. Every possible scenario that could have happened did, but Stellan made it. God was truly at work in Stellan yesterday. He does have some residual/maybe permanent heart damage, but his heart is still too small to tell for sure. His mom posted about everything that happened during the surgery on her blog.

Third, last Saturday I went to the new Children's hospital in town to visit Dakota . Her mom came and visited me last year when I was in the hospital, so I returned the favor this year. We had a great visit, but sadly, Dakota will not be coming home anytime soon. Her situation is VERY complicated, so if you want to know more, visit her page. Please just pray for this family, as Dakota has been IN the hospital more this year than OUT of it, and it's only April. With this current visit, she has atleast 2, maybe 3 more weeks. Dakota has 2 older siblings at home, so time with mom is a bit different now. Please pray that the next few weeks go by quickly, and that this will be her last hospitalization for a while.

Fourth, Tricia is back in the hospital with pneoumnia. It has been a year since her double lung transplant, and she's been doing well. A few weeks ago she started feeling bad and could tell something wasn't right, but her tests came back fine. She went to the ER yesterday morning and that's when they found the pneoumnia. Please pray that she gets better quickly.

And lastly there's me.
I have been working all week on a post, and it still isn't done. It has never taken me this long to write a blog post. But, this post is very deep, and it is coming straight from the deepest depths of my heart. It has alot in it, so I don't know if it will be published in sections or all at once.

Today was a good day. I had lunch with my family out of town to celebrate my cousin's birthday. I couldn't eat but 3 very small pieces of a cheese quesadilla. Then the pain set in, and I am still hurting. While driving home, I called my GI Dr. and spoke with the office manager for 20 min. (supposedly there's a flag on my chart that whenever I call in, I talk to the office manager before making any appts.). I told him the same thing I've been saying for almost a year now. I've had 2 botox procedures in the past 8 months, neither helped or worked. I've been off ALL narcotic pain meds for the past 3 weeks, pain is still there when I eat and equally when I do my tube feeds. And hearing that in the year 2009 there is NOTHING that can be done is no longer acceptable by me. I want answers, I want to eat a "real" meal again. I don't want to be in constant pain. I don't want a feeding tube.
Tomorrow I have 2 appts. - a Dr.'s and my theraphy. I'm also having lunch with a really good friend. We're going to Souper Salad, since I know that I will be able to eat soup.
Friday is a big day as I will be volunteering with Austin's newest quintuplets!!! The 5 babies were born in January, and being a nanny and already having volunteered with Austin's first set of quints, I wanted more fun. I am doing this on a volunteer basis, I love babies & kids, God has given me a gift of working with babies & kids, why not put my skills to good use. Besides, with having quints, help is always needed and wanted. Hopefully my health will continue to be good and I will be able to help on a weekly basis. Something to keep me busy and out of the house.

Thanks to all those who have been praying for the babies this week. Sometimes, I wish that more people read my blog, but then I remember in time maybe that will happen. For now I am OK with the 10 or 20 people that read it. That allows me to post more meanigful things and know that it won't be traveling very far.

Kayleigh

I woke up this morning to find a message on my twitter page about a friend of mine's baby girl - Kayleigh . I know that I have written about her before. She is a micro-preemie (weighed 1lb 1oz @birth). She's been in the NICU since her birth, almost 10 months ago. She is the baby who had a huge abdominal surgery last week, very similar to what I have had done. She had a g-tube put in, had a fundoplication, and had 2 hernia's removed. This surgery was the last "big" thing that needed to happen before she could be discharged. Things were progressing the way they should be after surgery until about 36-48 hrs ago. But it appears that something has gone very "wrong" in the past few days. It is believed that Kayleigh may have had a stroke and that she is now brain dead.
I know that I will never be able to feel what her parents are feeling now, but I have personally spoken/ written/ typed (whatever) with her father several times, and I have seen that each time Kayleigh comes close to death, God provides a miracle and she fights to live on. I know that her short time on earth has been for nothing.
Please join me, and my other blogging friends in praying for Kayleigh. This baby, more importantly this family has touched so many people on their journey these past 10 mts. this wasn't suppose to happen.
There is a prayer button to the left of this post that will take you directly to her page, but since word of this has gotten around, it is VERY hard to get onto her page. The link above (her name) might work, but feel free to leave comments on my blog and I will pass them on to her father.

Updates on the Babies... God has been good today

God has been good today.
Things have gone well for Kayleigh and Stellan.
First off, Stellan is in Boston at the Children's hospital. He is in the CICU: Cardiovascular Intensive Care Unit. Since his arrival early this afternoon he has had more labs done and a VERY indepth echo done and some chest xrays. His mom got to talk to the heart Dr. there and things are looking promising.
Please keep this family in your prayers. Stellan has 3 older siblings at home who are probably wondering what is going on and where their mom and baby brother are. Please also keep Stellan's dad and whoever else is taking care of the older children in your prayers. Pray for patience and that these kids will have some sense of understanding.

Secondly, Kayleigh made it through her surgery with no problems. However she is having a hard time recovering. She is very swollen, she's having a hard time keeping up with her stats, and she's just not feeling good. But, all of that is VERY understandable considering what she went through this morning.

Third, is Dakota. The only update I have for her is from this morning. She was still running a high fever at 10am, and because of that she was packed/covered in ice, in attempt to lower her temp. She was up for many tests and scans today to try to figure out what is going on with her.

I had a good day. The best I've had in a week. I got out this afternoon for about a hour and then came home and walked my dog around the block. I am over the worst of this time, but have a ways to go. Today has been exactly one week since everything started, and while I thought it would go by slowly and have a much different outcome, it has gone by very quickly and I have done well. Thanks to ALOT of prayers, and support from my mom and family and friends.

Big Day in Small Babies Lives

There are some babies in my prayer list that are having a BIG day today. And I'd like to write and ask for prayers for them today.

First off is, Kayleigh. She was born 6-08 weighing 1lb 1oz. Today, she's almost 10mts old, but has never left her bed in the NICU. She's fought so hard to live and make it this far. This morning she is having surgery that will help her to be able to come home soon. She's having: a g-tube placed (feeding tube, directly into stomach), Nissen (surgery to connect esophagus and stomach tighter {helps keeping acid reflux away}), Bilateral Hernia Repair & a new Central Line Placement.
Please pray for Kayleigh. I've had 2 of the above surgeries before, but having 4 things at once is HUGE. Pray that she can make it safely through and pray for wisdom and steady hands for the Dr.'s and nurses.

Second, is Stellan. He, his mom, and a PICU nurse are flying to Boston today in prep for his heart surgery, sometime next week. Stellan took a turn for the worse earlier in the week, and that sealed it for him for the Boston trip. Please check out his page for more info as alot has happened this week.

Third is Dakota. After being home from the hospital for only 2 days, she made her entrance in the ER late Monday night with a fever of 105. The Dr.'s started her on heavy duty anti-biotics, and pulled her PICC line (thinking that was the source of the infection), well it's not or wasn't because as of 2am this morning her temp was 106. Please pray that the Dr.'s can find the source of the infection and get her fever under control. Please pray for her mom as this is the 4th hospitalization in almost as many weeks.

As for me, I am feeling good. Alot better than I did last week when everything first started. I got out of the house yesterday, and may do so again today. I spoke to 1 family member on the phone yesterday (first time I've talked to anyone in a week). My only issue is my sleep. Because the meds I'm on make me sleep during the day, when night rolls around I'm not tired. I try to sleep at night with the use of sleeping pills, but they do nothing. Please pray that I can get back on a regular sleep pattern and start sleeping soundly.