Rest in Peace Baby Alison

These were the words from her mother on facebook a few hours ago...

Day 92: Alison passed away in my arms of her parents and love ones today at 2:32 pm. The loss of Alison was not only ours but a community of people who prayed for her, supported us and so many so much hope. Funeral Arrangements will be made through JC kirby and Sons funeral home tomorrow.


It was apparent to Kevin and I that our little girl would never stop fighting but unfortunately she was suffering and it became obvious it was a fight she could not win. We asked for a sign that it was time to end the suffering and she provided it and now has peace. I do not know that we will ever be at peace but we could not make a selfish decision. Much love to everyone.


Please keep her family in your prayers.

Asking for prayers for Alison Church

I ask all who read this  to pray for little Alison Church tonight. Her parents are in the same place Jack and I were in January with Logan. The doctors are asking her parents to consider turning the ventilator off. She has been on a ventilator for 92+ days, she is having seizures, and low oxgen levels. Little Allie is still hanging on and her parents are asking for a miracle. May God hold them up no matter what happens.

This is the most recent facebook post from her mother Ericka Starr Church


-is torn...I can not believe it has come to this life or death in our hands, it does not seem right, are we interferring with god's will, Is Alison ready for this to be over or does she continue to fight, I have no answers, I am waiting for a sign any sign...

-our choice is hope...we will continue to hold on to hope.

-She was unresponsive to touch, voices and pretty much everything today. We believe it is the medication for the siezures. They started feeding her again. They have strongly suggested that we spend as much time with her as possible and do lots of kangroo care. The doctor arranged for us to have a hospital room for the weekend to be close as possible at all times.

-Her oxygen staturation is still challenging. Even on high levels of oxygen she is struggling to stat above 70's. She did not do as well being held today as yesterday. I asked the doctor if he has ever seen a baby as sick as Alison surviv...e. He said he had but they were not children that could run up and hug you or even call you by name. He said Alison is as sick as you can be and still be alive. The siezures are concerning and new but her lung disease is the biggest challenge related to survivial. Kevin and I have not met anyone that has had a baby on a vent this long that has survived. So that is concerning. The doctor said he has seen babies go home on ventilators. Kevin told the doctor that he was not ready to give up or take her off the ventilator. I told the doctor that was a decision I did not want to have to make. He said that when he felt that she was suffering more than gaining he would tell us. We found comfort in that although that could be tonight, tomorrow or even a month for now. We have to live hour to hour. Our paster visited Alison today we missed him by moments I found comfort in that.

-My girls have showed me and many others that there is so much goodness in the world despite all the bad that we often tend to focus on. So many prayers, love, support, donations and more have come from the most unexpected places. And we want everyone to know that we would not have had the time with our girls without it. So many people have helped with Kaitlyn, drove us to the hospital, put gas in our cars, paid bills because of work we have missed but most importantly our employers have allowed us to be with each other and our girls without any threat of losing our jobs I have much love for everyone and all though we can never repay you we thank god for you everyday.

-They are not referring to any of this as improvement and continue to focus on how sick she is and that they have done everything they can medically. The doctor wants to be as honest as he can with us at this point so we can see the big pic...ture. It is important to have hope but it is essential to understand the medical state of your child. I have taken several pictures of Alison but have not taken my camera the last couple of visits...I jsut do not want to remember her how she has looked the last couple of days. Although the doctors fear the worst and prepare us for it they always hope they are wrong just as we do. Alison loves to prove them wrong...

Damn IUD!

Hope everyone had a great Christmas. Our Christmas this year was so blessed that my heart just melts thinking about it. Ava woke us up around 8am yelling that someone moved the "socks" that were hanging up. LOL Then I asked her if Santa came and she told me yeah he brought me a bike...and put presents and candy in my socks. :-) We enjoyed opening our gifts. Andrew was more interested in spinning the wheel on the bike than opening his gifts. Christmas Eve we went to Logan's grave. We burned candles in memory of him and sang some Christmas carols. It was Jack's idea. I felt kinda weird at first (it was dark a grave yard) but 6 songs later Ava was trying to catch things on fire and I felt pretty good. I actually felt joy this Christmas and no heart ache (for the most part..got a little teary once or twice). I celebrated Jesus birth and tried to bless others. I could not be sad that Logan was not with us, because I know his Christmas was much better than ours. :-)

I got a phone call yesterday from the GYN office saying that they were moving my surgery date from the 27th to the 6th of January. I went for my pre-op visit this morning. Paid them $489.32 then they tried to get the IUD out again...so after trying to rip my insides out once more..they still decided it was stuck. I signed a bunch of papers and then headed to the hospital for labs. I did a bunch of pre-admission papers and gave blood and now I'm done...never thought an IUD could be such trouble and the hospital told me since I was an employee that I was not required to pre-pay the hospital cost that is not covered...I was told I would be billed the difference after employee discounts and insurance pays...so I wonder how much that will cost? Oh well at least it will be out and hopefully I won't get pregnant to soon :-P

How Great is Our God!

A Christmas miracle has happened to our family this season and I am humbled by what my community, particularly the law enforcement community has done for our family. The past year and half has been hard emotionally and financially, but we have gotten by. This will be are first Christmas without Logan, but God's love continues to pour his love down over my family. God blankets us in peace and comfort. He continues to hold us in his arms and protects us. I am blessed. My family is truly blessed.

I just want to send out at HUGE Thank You to Groveland Police Department, Polk County Sheriff's office, and all the local Police Departments that came through for our family in a big was this season. I feel undeserving as their are so many other families that are worse off than us, but I am so grateful that through the giving hearts of our law enforcement community our families needs are being met. Those who have blessed my family in the past few years are never forgotten and are very close to my heart. I pray each and everyone one of your families is blessed this year as you have all done for mine. I would also like to give a special Thank You to Heather @ PCSO for taking the time to do what you did for us.

Coming into the new year I do have a few prayer request for all who read this. As those who follow my blog know that Jacob's medical issues are a constant battle. I just ask that you keep him in your prayers in the new year. Please pray that his seizure activity comes under control and that he starts to gain use of his body. I hope by this time next year I see a different Jacob. I would love to see him eat by mouth again, roll over, sit, and maybe even reach for things. Jacob is a blessing in our lives no matter what he does or does not achieve. I love my children so much and know that God gave each one of them to me for their own special reasons and I will continue to live each day with them knowing how blessed we truly are.

I hope everyone has a blessed holiday season. Merry Christmas from The Gunter Family.

Christmas Picture

We went to Celebration, FL where it "snows" everynight until Christmas lol. While we were there we had our 1st family picture...and it happened to be with Santa. The picture did not turn out so great, but with a little photo editing I made it look half decent enough to put on some Christmas Cards. I made the cards at 2am and picked them up at Walgreens at 9am..gave the 1st one out at 9:30...talk about a procrasinator catching up :-) Jacob is sick....again....he coughed for 6 hours strait last night. Poor baby has slept most of the day. I took him to the Dr. and their is nothing wrong just the same never ending congestion/cold symptoms he always has. I will leave you with some pictures of last nights adventures :-)

 

The 1st Family Christmas picture



My edited picture.



The picture on the Christmas Card with Logan added

My edited Logan :-)

Ava spinning in the bubble snow



My husband




Me



Neurologist Visit

A lot has happened since my last blog. Andrew and Jacob both had their 1 year annual review things with Early Steps regarding their progress.

Jacob's was on Monday. Same goals he has been doing. I believe I blogged about this already. We are working on vision, rolling, head control, sitting and standing. He is still at approximately a 2-3 month old level.

They are 17 months old today....

Andrew had his review on Thursday. They will be working with his attention span, I was told less TV for him...yeah I know my 17 month old should not be hooked to TV, but you do what you gotta do to get by    :-/.....they will work with him walking and I actually forgot at the moment what the rest of his goal are. They measured him at a 9 month old level. This is kinda depressing...reminds me just how far behind he really is.   :-( Though he is getting really good at waving bye bye now. He loves playing the uh-oh game. He is clearly saying ma ma and da da to the right person. He claps on demand. He is officially cruising furniture well. Seems like the light has turned on with him and he is on a roll. :-)

Now for the neurologist...I think I like her. We showed up 20 minutes late because we could not find the right building and they still had us come right back after registering. My kids did not even have time to destroy the room before Dr. Andrews came in. She talked with us for about 30 minutes. After we were done she put down her notes and announced "He is a mess." Glad she was honest. LOL She was shocked that he had went nearly 6 months since his last neurologist visit. She was annoyed that the old neurologist had not sent over the records yet. They were calling and hounding them to fax the records the entire time we were there. She finally decided to do her own EEG on him since the results were not there after 45 minutes or so. After she left the room they had us in the EEG room within 10 minutes. They did a 20 minute EEG. By the time his head was cleaned up and we were back in the room, she was already back in to see us again. This was the 1st time in nearly 17 months that someone sat down and explained what Jacob's "seizure like" activity was. She showed me these saw tooth brain waves that were nearly constant during the entire 20 minute EEG and actually printed it out to give to me. She said that the waves is what they call a partial seizure and that all the abnormal waves were coming from the right posterior side of his brain. She then continue on in telling me that she did not even understand why he was on phenobarb if he was not having actual seizures. She told me that the dose he was on was half of what is should be for his size (which it had not been adjusted in months) and that it obviously was not working since he was still having partial seizures. This could explain his regression if he is having seizure activity non-stop. She told me for his condition that there was a medication better for him that was developed for partial seizures called Trilipdal(sp). She said that phenbarb was not a good medication for him and that is causes more developmental delay over time. She also does not agree with his klonipine. She feels that he is on to much and wants to ween him back down to a lower does or possibly get him off it all together. So over the next 5 weeks were are weening off phenbarb and onto Trilipdal. We will continue to increase the dose until the abnormal waves are better. She said this new medication has less side effects and dose not sedate him. She said the reason why he is drooling more is from the increase in klonipine as well. This never occurred to me because about the same time his dose was upped he stopped sucking normally to. I see her again in a month. Once everything is going well we will probably do another MRI and possibly start E-Stem during speech therapy to strengthen his muscles and ability to suck. I am hopeful that this is a good change and that a less medicated Jacob may equal more control of his muscles and hopefully some progress. I will never give up hope on him. :-) Just as the bible verse said over all 3 of their beds in the NICU "I can do all things through Christ who strengthens me" Philippians 4:13

Bye Bye...Uh-Ohhh

It's been me and the boys today. Jack works 8-8 today and Ava has been at school since 9am. The boys seen the Early Interventionist today from 9-11. Then it was baby nap time and mommy alone time. :-) The kids and me are going to the movies with my friends Jennifer and Dahlton tonight to see Tangled in 3D. Ava is going to get to where her "movie watching glasses" again and this will be the boys first movie theatre visit.

 Andrew has been quite the inquisitive one today. He is talking away. Today he said bye bye and uh-oh for the 1st time (well at least that I have heard). The PT brought a stander a few weeks ago, but I never put Jacob in it until today. Not sure I am liking it to much. You have to smash his hips and butt into the thing and put it as tight as I can to hold him up and eventually he still slides down until his chin is the only thing keeping his head above the padding and tray. I like his gait trainer better plus it fits him better. I had to put pillows and blankets in the other to stop him from flopping over. Andrew is currently over in the baby cage with Jacob. Jacob is in his gait trainer and Andrew is taking Jacob's glasses off and trying to figure out how to get him out.

Someone gave us a very special Christmas gift today. For us it is just another testimony of God's love and how he continues to provide our every need. :-)

Just thought I would post some pictures and videos I took today since I have nothing better to do :-)

Beginning to look a lot like Christmas

After a crappy weekend at work I felt like we needed a little holiday cheer. Jack and I went out this morning in the freezing cold with 3 kids in a van with half working heat to get the Christmas tree. :-) Yeah that sounds bad doesn't it...if it counts the heat in the back of the van works and they wore fleece pajamas and never got out of the van.

I'm happy to report Jacob has made it nearly a week without any major vomiting (I think) I'm starting to increase his feeds back up to feeding over an hour instead of 2, 3, or 4. I am also giving him 50cc once or twice a day thickened in a slow flow nipple still. He is doing well with this. I try to do it 1st thing in the morning and right before bed. He won't take a pacifier for me and I refuse to let him loose the ability to suck or swallow...so this is my compromise with doing tube feedings. Jacob also has the smell of pediasure coming from him all the time. I guess it is just like when someone eats fish all the time, they smell like fish...right??? I told the speech therapist that I was going to start pureeing baby food and whole milk and feeding it to him...she told me I actually could if I wanted to and that their are cook books out their that tell you what to do to give them everything they need. I am considering trying this 1 feed of the day, but I will not stop his pedisure until I have discussed it with his pediatrician and possibly nutritionist. As his speech therapist said she knows they do it for adults, but she is unsure about children. I have already pushed water down baby food through his tube before and I have never had an issue.

While the physical therapist was working with Jacob today we discussed what the plan was with Andrew. He is going to start physical therapy after the new year for sure and said from just watching him play in the baby cage she can tell he does some thing off the normal and that he appears to be low toned. I expressed my concerns about how he still can not stand without holding on to things etc. She told me she does not think he is anywhere near walking yet. She said he does not stand up strait and he still leans to hold himself up. She said she thinks he will be walking by the spring time. This is very depressing to me. As I see most my friends' preemies walking or near walking that are younger than mine. Makes me wonder what other things he may have issues with as he gets older. He just doesn't seem to be catching up as fast as my friends' kids. I can happily report  that Andrew can now clap his hands and wave bye bye! :-)

My husband stayed very busy cleaning our disaster of a house yesterday. He cleaned every room in the house and put away Mt. Gunter as we call the massive pile of laundry that accumulates on our floor for weeks at a time. Every time we spend hours putting it away we kept saying that we will never let it get like that again...then we blink and the mountain has returned.

It was bitter sweet putting the decorations on the tree and handing the stockings today. I actually held back tears as I pulled out the little blue paper ornament with Logan's name and his foot print on it as it adorned his room last year around this time. I remember last Christmas like it was yesterday. We were so excited he was getting better and then he caught another infection that he ended up on isolation for. I remember visiting him on Christmas wearing the lovely yellow isolation gowns. I remember his Mickey Mouse stocking with his name we made for him at Down Town Disney pinned to his board in his room. We had wrapped a few small toys for him and put them in his stocking to open on Christmas. He had a beanie baby bear with a Santa hat on in his crib that was given to him by the hospital staff. There are lots of things on our tree this year to remind us of our baby. I have his blue paper foot print, a few months ago I had some things made and placed in these bead things..it has his foot prints and the quote "An Angel in the book of life wrote down Baby Logan's Birth. And whispered as she closed the book "to beautiful for earth."", I also have 5 ornaments on the tree that Jack made last year while staying at the Ronald McDonald House in Tampa while we were at All Children's doing Jacob's MRI. He made 1 for each of the boys, 1 for Ava, and 1 that said The Gunter's." I thought this was so sweet that he stayed up late that night to make them while I stayed with Jacob. Finally the last precious reminder of Logan on the tree is the 3 baby's 1st Christmas ornament that my friend Jill bought me. People will probably think it is odd, but I hung them all 3 of the same branch as they were still all with me during their 1st Christmas.

The Tree

The stockings

The new festive living room lol

Logan's forever contribution to our Christmas tree.

HEAT

Yesterday turned out not to be such a bad day after all. The heat got fixed around 6:30 last night. We did have to spend part of my surgery money to fix it though. It was not as bad as I expected. $60 service call and $60 for the part. Not to bad. After they left we decided last minute to go to Santa's Extravaganza. Kids were free and adults prices were not bad. It was small circus type thing. It was hosted by the National Guard and proceeds went to Toyz for Tots. Wanted to go to the movies with Ava last night, but unfortunately that will have to wait until a pay day :-) Ava got to ride on a pony "reindeer" she loved it. There were a lot of young talented people that put the show on. Over all I would go see it again. They have a website with times all the way until the end of the month. They are in a new city every night. I went to Haines City, tonight they are in Lakeland. http://santasextravaganza.com/

The kids seem like they are getting sicker. I had my sister's son Gavin today too. Jacob is puking and puking. He is so congested and junky sounding from the vomiting! Grr...this is defiantly nothing new for him though.

He also had his yearly evaluation with Early Steps. Pretty much the same goals for this year as last year. The physical therapist is to continue working on him rolling over, sitting, and head control. The EI and vision therapists are to work with him tracking and fine motor skills. To goal is to try and gain some use of his hands. Andrew should be starting physical therapy by the beginning of January. Hopefully we will get him walking soon.

The PT brought him a new bath chair today. We also discussed ordering him his own stander and a taller rifton chair that is more high chair height.

The Early Steps coordinator is going to gives us some info on a lady that has their own hyperbaric chamber in her home that is in our county. She lets people use it for a small fee. So, depending on how much she charges we might try a few more months.

My sister just came to get her kids and so nicely just cleaned up most of my house including loading the dishwasher and washing machine. I am so blessed to have such a wonderful sister, while I just sat on my fat butt playing on the computer :-) I <3 my sister. I hope everyone continues to have a blessed week. I still don't have the new surgery date. I see my primary doctor tomorrow. I think I ate 1 million calories today...I really don't want to see how much a weigh tomorrow :-/

Date Changes

I called to confirm the cost and dates today and they inform me that they filled my pre-op appointment. So now I have to wait for them to call back with a new surgery date. Oh, and it is $480 I have to come up with Grrr

Jacob puked in his sleep last night.

To top it off the heat went out last night and we are currently waiting on the repair man to get here....so we will spend surgery money to fix the heat...when it rains it pours, but I do not worry because God is in control. :-)

Thursday is the day

Everything is set. This Thursday I am going to have this stupid IUD out of my life forever. It will be an outpatient procedure to get the supposed embedded IUD out!!!

The kids are all sick again. Everyone has coughs and runny noses. Jacob is doing his usual puking. Even Jack is having issues this week. He has been covered in hives since Friday and we don't know why. Nothing has changed from his usual.

We also have an appointment with a new neurologist from All Children's Hospital. Our appointment is on the 15th. I'm excited!! Outside of that there is nothing to update. I will update again after Thursday.

I'm so mad!!!!

1st off Jacob is home. He came home Wednesday afternoon. They did nothing for him their except unconstipate him, which I could have done at home. They also did not feed him until the morning he was discharged, so guess what happened when I got home. He puked all over the place. I have to schedule a follow up for him to be seen in a week. I am so aggravated!. If she does not refer me to a surgeon when I see her next week I am switching doctors!!!

I also dislike his neurologist this week too. How long ago did he have that 24 EEG??? 4-5 weeks ago..I don't know it was awhile ago! I've been calling for several weeks now asking about the results and they keep telling me they don't have them back from the hospital yet. So I finally lost my patience on the phone with the receptionist while I had nothing better to do it he hospital with Jacob. Seriously do they have no follow up on their patients? Do they not realize it has been over a month for results that I was told would be back in a week? Then my bad yesterday...he apparently had a neurology appointment that was scheduled 5 months ago yesterday at 10:30 am. I missed it on the calender with everything going on and by the time I realized it, it was to late. Of course I call today and their calls are being referred to the answering service. Apparently they are only open until 12 of Fridays??? They close 4pm the rest of the week. I am actually sitting on hold right now for the pediatrician's office to get a referral to a new neurologist. If the GI doctor does not do something soon I am going to change her too. I think I said that already.LOL I would love to get all of his doctors in 1 practice/hospital. Right now he sees specialist all over Central Florida. He has doctors in Orlando, Lakeland, Tampa, and Saint Petersburg. I think I would like to get all his doctors from offices that practice out of All Children's Hospital.

I went Tuesday morning for the ultrasound to check IUD placement. I got the results yesterday. The IUD is out of place (prob from him pulling it of course) but it is right at the cervix. The ultrasound tech said to her it did not look like it was embedded, but they also seen an area that was abnormal right at the c-section scar. So who ever read the results believes it is either an embedded IUD, part of the IUD embedded and broke off, or it is a fibroid. Lovely so they basically have no idea without putting a camera up there. This procedure is an outpatient surgery in the hospital. Now for the part that makes me really angry more than the fact that this IUD is stuck/embedded/broken etc. They called to schedule the procedure for next week (of course the pre-op and procedures were both on days Jack has to work) and gave me the blah blah things about insurance covering it and then tell me by the way we need $420 paid in full when you come for your pre-op visit. Seriously?!?!?!?!!?!?!!? They want me to pull $420 out of thin air  in 5 days. I don't even get paid until next Thursday. Then this is the crappy pay check week. This is the paycheck we hardly have any money left and it is going to be even shorter than normal because I did not work last weekend. I might actually have to take money out of my kids savings account or do a pay day advance just to buy groceries and gas for the next 2-3 weeks. I've never been in this situation before!!!! I depleted all my savings paying the $1000 a month I was spending in gas taking Jacob to hyperbaric and I have not been able to recover ever since. I can't seem to get caught up and I can't seem to get any money back in my account for emergencies. I am probably at my financial all time low right now (outside of the teenage McDonald's years) Income tax is coming soon right??? :-) God always provides and I will get by. I have wonderful friends and family that have and have offered to help me out, but I really hate owing money to people. I used to be the money lender not the borrower. :-( I already owe one friend $60 still and I owe my sister $200 still from getting my brakes fixed on the van. Oh well now that I have told the world how poor we are right now I will get on to something more positive. Oh by the way, I told them to push the surgery date back to a day Jack does not work and it will give me more time to come up with the money. Do normal working class people that make less than $70,000 a year with 3 kids just have money laying around? Why do doctors offices seem shocked when you tell them you can't drop almost $500 in 5 days? My goal next year is to save a percentage of each check in a different account to make our bills and mortgage just in case something happens one day.

Jack and a few other moms from our local parents of multiples group put together a Christmas Float for the Lakeland Christmas Parade. We started building it Wednesday afternoon and we had it completed at 5pm yesterday for the parade that started at 7pm. I don't think the float looked to bad for day 1/2 of work and hardly any budget at all. Plus it was the 1st float we ever built and used donated equipment. The float was less than $200 combined. Only 4 families road on the float. We put it in the parade with the hopes of attracting new parents to join our group. Our group may be small, but the parents that truly wanted to be involved are great.

Just wanted to let everyone know that after I ranted about our finances..Jack just called and told me he had a $320 check in his box at work. It was the Christmas bonus they were told they were not getting. It may not pay for the surgery, but it may just save us so we can pay out bills next pay check. God always provides for me and I will always praise him no matter what this world brings my way. He held me in his arms when my children we born, he held me when Logan died, he continues to hold me and Jacob as we continue to struggle with his health, and he has never failed me providing for my needs. I can live without a lot of luxuries, but I can not live without my God.  I am blessed

Psalm 34:7-9

The angel of the LORD encamps around those who fear him, and he delivers them. Taste and see that the LORD is good; blessed is the man who takes refuge in him. Fear the LORD, you his saints, for those who fear him lack nothing. (NIV)

Pictures from the Parade stolen from CorySue's facebook page :-)