Friday, December 31, 2010

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.

Wednesday, December 29, 2010

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...

Tuesday, December 28, 2010

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

Thursday, December 23, 2010

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.

Wednesday, December 22, 2010

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


Saturday, December 18, 2010

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

Tuesday, December 14, 2010

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 :-)






Monday, December 13, 2010

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.

Wednesday, December 8, 2010

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 :-/

Tuesday, December 7, 2010

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. :-)

Monday, December 6, 2010

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.

Friday, December 3, 2010

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 :-)





Monday, November 29, 2010

Seriously?!?!

I'm typing this on my tiny touch screen on my cell phone at St. Joseph's Hospital in Tampa....yes, I am that bored! Took Jacob to the GI doctor to address his vomiting and constipation issues at 11am. Did not get home and in bed until about 4:30am and was up at 8:30...I probably should be sleeping. Anyway, after examining him she tells me she is going to admit him! WTF! I was thinking he is just constipation! They are trying to tell me his vomiting is related to the constipation...even though he has been vomiting for 9 months. Oh well, we are admitted. He has an IV, he is not allowed to have feeds, they are checking his blood, doing an x-ray, and they are going to hold his robinal and give him laxatives. I was told we would be here for at least 2-3 days. He has to be vomit free and pooping normally.
Thank you to my Jill who wrecked her car trying to come get my kids from Tampa and still found a way to get my children for me. Good selfless friends like her are hard to find. I pray God has blessings in abundance for her in the near future. She could surely use a break. I'm going to win the lottery so I can give her her a cut and take Jacob to China :-) God has blessed me with so many wonderful friends Thank You!

Sunday, November 28, 2010

On the Road Again

We have been in Albertviille, AL for almost a week now. We have a 10 hour drive ahead of us tomorrow. Some prayers would be greatly appreciated for a safe trip home. we plan on leaving around 4pm (5pm my normal time) Hopefully we will make it home around 5 am. Jacob has a GI doctor appt I think at 1pm on Monday and Jack has to work 1pm to 1am on Monday. Busy Busy Busy week ahead for us I have lots of appointments to keep up with. BTW Jack's new work schedule is going to be 1p-1a I am excited. I think it will be better for him and us. Now when I take Ava to school, I don't have to pack the babies up YEA!!!

Time has flown by since we got here. We spent a great deal of time driving (Jack's idea) which I was not so fond of. Yesterday we literally spent 7 hours driving because Jack wanted to go to Tennessee. We drove to Lynchburg area, stopped at a gas station and the Tim Ford dam then drove home. WTF wasted day! I did get 2 days of doing nothing and just spending time with my mom and dad which I loved and Jack bitched the entire time. Monday we went to Huntsville and Tuesday Scottsburo. Yesterday was shopping day and today we went back to Huntsville again for more shopping. I bought my mom a cell phone today to! Now, I just have to get her to use it....overall we have had a really good time. The driving past was not so bad, but thinking about the 10 hour drive here and the drive home just sucks when you spend most of your vacation days driving all day as well. I felt bad for the babies. They spent more time strapped into car seats and high chairs than they have moving.

Ava has been very whiny and I think she is ready to go home. She has enjoyed playing with her cousin and my mom cats lol

It is almost 2am now so I am going to post some pictures and go to bed. God Bless!

sleeping babies and daddy

Ava and James at Wal-Mart lol

Jacob and Andrew eatting (well Andrew is)

Jack and his babies

At KFC Ava and Jack

I think Ava likes statues of old men....she is feeling his leg up lol

My dad and Jacob

Wednesday, November 17, 2010

My Mirena IUD is STUCK

Dang it! I went for my yearly visit today to the GYN. I asked if they could remove the IUD, because I was tired of the not so pleasant side effects and wanted a different form of birth control. I assume the position after sitting half naked in the exam from 45 minutes for him to come in. He has the forceps things and pull the string...the forceps loose their grip. He tugged several time on the string trying to get it out and he could not keep a grip on it. He then left me in the room in "the position" for another 20 minutes or so, I was bored so I gave everyone on facebook a play by play LMAO. He comes back in with the jaws of life tools to get it out. He pulled and pulled again and tried prying the damn thing out. It did not budge .Apparently it really likes me. It hurt like hell and I felt like he was trying to give me a hysterectomy right then and there. After pulling with no avail he gets up and tells me to get dressed and meet him in his office.

I meet him in his office and he tells me I need an ultrasound to see where the IUD is. He said there are several things that could be happening. 1. My cervix just won't let it out. 2. It is embedded in my uterine lining 3. It is embedded in my uterus from the scar tissue from my c-section. If numbers 2 or 3 are the case it could possibly have caused permanent damage to my uterus affecting my ability to become pregnant again.

This information has me freaking out!. I WANT to have another baby at some point and if my decision to have the IUD placed in the 1st place leads to my infertility I will have a very hard time dealing with this.

I know most of my friends and family have their own options about Jack and me having another baby, but this is our life and we both really really want another child. Not saying now is the right time, and I do not plan on getting pregnant right now. What happens will happen though. After the IUD is removed we planned on trying a different form of birth control that would allow me to have regular cycles again.

Anyways, I am freaking out, my female parts hurt quite badly right now, and I have to wait almost 2 weeks for the stupid ultrasound! I have an appointment for an ultrasound on the 30th.


I noticed that this post pops up a lot during google searches on this subject. Welcome to my blog LOL Just an update for all the women franticly researching this issue as I did. I believe it was the end of January I did have to go to the hospital, be put to sleep and have it removed. The entire thing with my insurance cost me about $800-$1000 (still haven't paid all the bills)to have it taken out. I had to pay my doctor's office nearly $500 before they would even schedule the appointemnt. Thankfully I work at the hospital my procedure was done at so, I was spared that expense. Since the procedure I have also received bills from the doctor who put me to sleep and pathology. My IUD was NOT imbedded once he went in. He said he diolated my cervix and it fell right out. WTF! I know right....that could have been done in the doctors office. Anyways while he was there he did a D/C and sent the tissue to pathology apprently. I was a little sore the 1st day or 2, but nothing horrible. 3 or 4 days out everything was fine. The very next month the horrible cramping periods I had pre-IUD were back. Boo!

Update number 2: 4/11/12 Anyone worried about getting pregnant after IUD removal. I am currently 35 weeks pregnant due for a c-section (more than likely) on May 8th! Yay! I got pregnant about 7 months after I had the IUD removed with no issue. Good Luck to anyone reading this :-)

Update number 3: 7/18/12 I'm crazy...to scared to make things perminent, and not a fan of shots, pills, or things implanted in my arm so, I took the plundge and had another IUD place about a month ago. I go tomorrow to have the strings trimmed shorter. Fingers crossed when I have it replaced in 5 years I have no issue. I've had random spotting nearly every day or 2 very little though since it was placed no real period though. No cramping or any othe issues.

Tuesday, November 16, 2010

Swallow study results

I was up bright and early at 530 this morning. I took Ava to my sister's house so she could drop her off at school. Then, the boys and me were off to fight rush hour morning traffic to to All Children's Hospital in St. Petersburg...a 45 minute drive took us nearly 1 1/2 hours this morning :-/.  I was 30 minutes late, but they were very good and worked me in. Well they tried thin liquids and thick liquids, they tried y-cut nipples and fast flow nipples with the thickener, they tried sippy cup and syringe feedings....he aspirated everything. He had good swallows, but what was happening was he let the fluid build up in his throat before he swallowed and did not completely swallow everything. So, there was residual fluid left in his mouth and when he went to take a breath he was aspirating small amounts into his lungs. He did well swallowing1/2cc of baby food at a time with a syringe. So the verdict is NO MORE BOTTLE FEEDINGS for now :-(. It took a lot not to cry when I seen him aspirating everything 1. because I thought he was over aspiration and continued to force him to eat 2. because I feel like I failed.  This does not mean it is the end of him eating liquids....maybe once he is well again and becomes more coordinated things will change...she also mentioned an electrical impulse therapy called E-Stem which is used to strengthen the muscles that are used to swallow. She said this may benefit him and reduce the residual left in his mouth. We can't try that until he is 18 months old adjusted age so 5 months from now. The plan for now is to g-tube feed him and give him puree foods by syringe 4 times a day when he eats followed by a pacifier to help him swallow and so he does not loose his ability to suck and swallow. I did manage not to cry there...and I had excepted by the time I got in the car...so all is well. He needs a break. Maybe he will stay well. The speech therapist also said that maybe he was refusing to eat because he knew it was not going down right anymore. Though, when he was aspirating he was not coughing so they are concerned he does not feel it.

On a brighter note he must have knew I was desperate for something. He has been so alert tonight. He has started doing some of the things he has not done in weeks. While on his stomach tonight he started pulling himself up again with his chest off the ground. Then he proceeded to try to roll. It seemed like he did it on purpose and not just a spastic movement. He has rolled not once but 3 times in the last hour :-) He was on his back in his crib earlier and when I went back in to get him he has rolled himself to his side. I see him trying so hard to move. He is doing okay with his arms, but his legs just don't want to work with him. I'm still very happy...shows me he has not given up. :-)
The monster in his cage

Jacob pulling up tonight. He rolled 3 times from stomach to back :-)


 <><> Jacob's video of him rolling over!
Ava made me take a picture of her rolling because I was making a big deal about Jacob rolling LOL




Monday, November 15, 2010

better days........

I think things are slowly...hmmm very slowly getting better. Jacob ate 4oz for me this morning by mouth and 5oz last night when I came home from work. I think he is getting constipated again because Jack did not give him the miralax all weekend like he was suppose to. Funny thing with Jacob seems like with his eyes dilated (the stuff we put in them on Thursday night takes a week to wear off) he is looking around more. I'm excited to get his glasses back. I wonder if they will make a difference this time. Trying not to loose hope.

Andrew is really starting to take off developmentally. He is doing very well with his fine motor skills. He holding toys and really looking at them to figure them out. He has figured out how to turn several toys on and off. He still loves Jacobs light toy. It still tickles me when he sits in his baby cage pushing the button and holding it down himself to watch the light spin. I hope that maybe after Thanksgiving we will have the physical therapy going with him. I was hoping he would walk by Christmas, not so sure if that will happen...so maybe by the end of February. I only say this because the kid has no balance and can not stand on his own. He does not even attempt to stand by himself. He seems more organized and less scattered. After countless pops on the behind he finally stopped trying to escape when I change his diaper. He used to drive me crazy, constantly trying to roll over, crawl aways, or lifting his butt off the changing table over and over again. He definitely understands "No" now. He is drinking whole milk better and he is starting to eat more foods. He really likes peanut butter and jelly. :-) I still can't get him to eat anything not attached to breading, bread, or crackers..lol this baby is starting way to young loving bread.

I caught Ava building a dirt mound aka "castle" according to her on my patio in the back yard this morning. She actually woke up 2 times last night to go potty. She still had wet pull ups this morning though :-( She is currently lining her stuffed animals up down the coffee table. She is waking them up from bed time. Last night she was in her room trying to stuff like 15 stuffed animals in one of those doll sized play pens. She was having a fit because she could not find a place for monkey and asked me to help her. I shoved monkey into a spot, she take him out and yells at me that where I put him was the kitty cat's spot.

My dad called me telling me once again how he was getting excited. 1 week until our 1st family trip out of state. I wish Logan could be here. I'm sure I will be thinking of him the entire time. I've reasoned with myself about the whole autopsy thing I posted the other day. I logically know its not my fault, I read all those little things I forgot about in my blogs. I forgot that his blood pressure was higher than mine! I remember how he was on all those medication for stuff I don't even understand...there were a bunch of supplements for his electrolytes I think. My only regret was not waiting another day. He was unresponsive before when his co2 levels were high, but I don't remember him not making an attempt to breath. His final day he was unresponsive and not breathing on his own. I will never know if it was just a side effect from the co2 levels or brain damage that caused this. I feel that I never gave him a chance to try and get better. I was so overwhelmed and physically exhausted that I just wanted it to be over. I wanted his pain and suffering to end. I'm glad that his brothers and sisters got to be there with him. I'm glad Ava and my sister finally got to hold him. I'm glad I got to told him without wires and monitors. I glad people that loved him friends and family where there. I was unconscious for his birth so even has hard as it was I'm glad I got to comfort him in his death.

Saturday, November 13, 2010

Logan's Autopsy report and more doctor visits......

Today was better than last night. I don't think I mentioned on Monday that I picked up Logan's modified medical record...apparently they give you the big stuff and not all the nursing notes, lab work etc..they pretty much gave me radiology reports and doctor dictations. Just the modified report was over 50 pages. To get his complete medical history they expect me to pay $1 a page :-( Along with the medical records was his complete autopsy report. I wish I would have never read it. I will have to give details on it later...my heart is just to heavy to have another night like I did last night.

I attempted to let my feelings out and talk about it with a friend online last night...which resulted in me having a near nervous break down...didn't know I still had it in me. I could be reading or interpreting it wrong, but it seems like everything that was told to me during that time did not show up on the autopsy. Last night I think I cried harder than I did when he died. It lasted for hours. I nearly hyperventilated and sat in the shower for a while and finally went to be around 3 am when I had to be up at 7:30. I guess I needed that. I felt like I was fine, didn't feel like I still needed to mourn him or anything, well I guess I never really mourned him in the 1st place. I felt a peace, and now white pages full of words and rereading post just brought all those painful memories back like they happened yesterday. I ended up reading every word I wrote from November to January 30th. I read how optimistic I was, how much faith I had that God would heal him, and finally I realized how much grace God had over me for me to walk through that storm in our lives and come out still standing. I realized today how little faith I have put into our current battles. I expected miracles with Logan, I truly expected him to be fine, to live, to grow, and eventually BREATH! I did get miracles from Logan. Life lessons I will never forget. How kind strangers can be. He taught me that there are people that care for others still and expect nothing in return. Blessing are still abundant in our lives, we have great friends and family. God continues to provide for our every need. There are still kind strangers willing to help others. I have been seeking harder than I have in a long time. After Logan died, needless to say, I didn't expect medical miracles anymore. I would love to see Jesus come heal the blind and have the cripple stand up and walk. That would nearly solve all my problems, unfortunately my optimism and faith have been shadowed with negativity, doubt, self pity lately.

I have not allowed these thoughts to knock me off my feet, but man I have nearly fallen to my knees. I wake up every day and fight with him to eat, give him 10+ doses of medication he requires every day, clean the vomit, stretch him, hold him, listen to his non stop whining, I'm there for every therapy rather I have to take him to it, or just have him ready when they get to my house, the none stop doctors appointments, the never ending changes of medication and medication doses. Then still be there for Andrew, Ava, and Jack not to mention all their none stop whining. I  told Jack how wonderful life would be if I had a switch to turn off my hearing at will...he didn't agree :-) After reading what life was like this time last year, you would think I would be jumping for joy and praising God that this is a piece of cake and not life or death. I don't mind taking care of Jacob. I'm his mom, it is my job. I'm just so discouraged and I could really use a little miracle with him. He has regressed completely anything that he did before, he stopped doing now. He hardly eats at this point. He does nothing but cry. That's a lie he still smiles and laughs when I sing to him, but no steps, no head holding up, no pulling his body up with his arms, no attempts to roll, nothing. Not to mention how he vomits up half his food every day and never get rid of his cold symptoms.

God continues to comfort me and I know he is there he is holding me up when I no long want to stand, without his grace I would have fallen. Last nights tantrum was good for me it was a release of feelings I could not let out 9 months 1 week and 6 days ago. Though I paid dearly for my tantrum last night with a stuffy nose and headache that would not go away today...it still just needed to happen.

I am going to scan the autopsy report at one point and post it, but just a quick recap of what I took from it...all I wanted when I got it was why he got so sick...I still have no answers. The report started out by giving a brief history of him being an ex-28 week triplet and ended by saying he had a rapid deterioration over 2 days and pretty much ended that I killed him. Something along the lines of after the infant rapidly declined over the course of 2 days mechanical ventilation was stopped at the request of his mother. It did mention prior to this his hypercarbina (high CO2 levels) and his history of chronic lung disease and surgeries, but nothing was mentioned as to what his Co2 level was, there was no mention of his nearly non existent urine output, etc. The picture that was painted for me that day was that he was septic from some kind of infection in his body (I was told it started from a UTI), that his organs had shut down, they said there was blood coming out of his g-tube etc. This is why I made my decision. I figured if he lived at all that he would probably require mechanical ventilation for the rest of his life, that he would have essentially been a vegetable, and that he would have had extensive organ damage from the Co2 and acidosis. There were no lab values in the autopsy report, I did not let them cut his head, so there was nothing mentioned about his brain. What it did say was that there was no sign of infection in his lungs or anywhere else in his body. There was no pneumonia or infection in his lungs, his kidneys and bladder were unremarkable. The only thing that was noted at all was mucus plugging in his lungs, liver, and calcium deposits in his kidneys. It paints a picture of a sick infant, but never tells me what made him so sick. His cause of death was me having the ventilator turned off even though I was told he was already brain dead. So, I have no answers still, and if anything I have more doubt that I made the wrong decision. He might have died anyways, but at least I would not have it on my shoulders.

Today I pretty much listened to 2 songs from my favorite group ever Third Day. There songs just seem to speak to me and comfort me when I am about to loose my mind.

WHEN THE RAIN COMES:
When the rain comes it seems that everyone has

gone away
When the night falls you wonder if you shouldn't
find someplace
To run and hide
Escape the pain
But hiding's such a lonely thing to do
I can't stop the rain
From falling down on you again
I can't stop the rain
But I will hold you 'til it goes away
When the rain comes
you blame it on the things that
you have done
When the storm fades
you know that rain must fall
on everyone
Rest awhile
it'll be alright
No one loves you like I do
When the rain comes
I will hold you

Revelation:
My life has led me down the road that’s so uncertain

And now I am left alone and I am broken,
Tryin’ to find my way, tryin’ to find the faith that’s gone
This time, I know that you are holding all the answers
I’m tired of losing hope and taking chances,
On roads that never seem,
To be the ones that bring me home
Give me a revelation,
Show me what to do
Cause I’ve been tryin’ to find my way,
I haven’t got a clue
Tell me should I stay here,
Or do I need to move
Give me a revelation
I’ve got nothing without You
I’ve got nothing without You
My life has led me down this path that’s ever winding
Through every twist and turn I’m always finding,
That I am lost again (I am lost again)
Tell me when this road will ever end
Give me a revelation,
Show me what to do
Cause I’ve been tryin’ to find my way,
I haven’t got a clue
Tell me should I stay here,
Or do I need to move
Give me a revelation
I’ve got nothing without You
I’ve got nothing without
I don’t know where I can turn
Tell me when will I learn
Won’t You show me where I need to go
Oh oh
Let me follow Your lead,
I know that it’s the only way that I can get back home
Give me a revelation,
Show me what to do
Cause I’ve been trying to find my way,
I haven’t got a clue
Tell me should I stay here,
Or do I need to move
Give me a revelation
I’ve got nothing without You
I’ve got nothing without You
Oh, give me a revelation
I’ve got nothing without You
I’ve got nothing without You

Now on a much brighter note, Jacob had 2 appointments today. 0930 this morning he seen the pulmanologist in St. Pete. She pretty much said the same thing everyone else said that he needs his GI issues fixed. Now if we can only get that through to the GI doctors head! She is also giving us a medication to dry up some of his secretions i.e. his drool which he chocks on because he refuses to swallow. I will try it and see how he does.

We had a nice lunch in Ybor at the Spaghetti Warehouse. Then we went home for nap time.

At 3:30 he had an appointment with the low vision doctor at Lighthouse for the Blind in Winter Haven. He examined his eyes and upped him prescription to +5.00 on both eyes and a  bunch of other numbers behind that...

Tonight was date night with Ava. I invited along my friend Jennifer and her son Josh. We went to see our 1st movie together since she was a baby. We seen Megamind on the new IMAX screen in 3D. Ava got scared toward the end, took off her glasses and said she was ready to go home. LOL I convinced her it was okay and we did finish out the movie. I think she really enjoyed it and I think in the future she is going to always expect "movie watching glasses" every time she goes to a movie theater LOL


Ava and Josh getting ready to see Megaminds


Thursday, November 11, 2010

All stopped up

The entire family, everyone but me has had a stomach flu this week!. Jack has even missed work for 2 days. I couldn't help but notice that while everyone else had liquid coming from both ends :-/  Jacob had vomit and no poop. I called the pediatrician and we went for a visit yesterday afternoon. She sent him for an x-ray and the results were that he was full of shit...literally!

Last night after liquid suppositories and a 1/2 teaspoon of miralax we had poop...3 diapers worth :-) He has not vomited since just before his doctor appointment. We have held down 16oz so far (all g-tube none by mouth) He is pretty congested and his chest is rattling, but not coughing. Ugh...this kid needs to get better!

Now that I'm done telling everyone about my families bowel habits :-) I will continue...

Andrew had his 1st cup of whole milk today. I've given him a few cups of Ava's skim milk which he pretty much threw back at me. Today he sipped the whole milk, spit it at me, then realized it was not so bad, and started drinking it LOL

Ava went back to school today. She cried when I dropped her off. It broke my heart, but man I needed a break!

My pediatrician is still pushing for me to accept in home nursing care. I don't know how I feel about this yet. I don't so much mind the weekends when I'm not home, but not sure how I feel about them being here with me. I also have trust issues. Some of the nurses working in home health are total idiots, ghetto, or just plain lazy. I think Jack could definitely use the help on his weekends. My sister told me she don't really want the help. They are trying to get 16 hours of care Friday, Saturday, Sunday, Monday. I guess I will try it and I can always tell them I don't want it.

We are getting excited about our up coming trip to AL for Thanksgiving. I hope everyone is well when we go. I'm going to take Ava on a date with mommy tomorrow. We are going to see Megaminds. Then on Saturday we are going to a farm to pet animals with our multiples group.

I think that is all the random stuff I can think to write for now <3

Tuesday, November 9, 2010

Dr. Ikeda eye doctor visit

Dr. Ikeda was quite alarmed to see Jacob wearing glasses and also acted like she was offended that we seen the low vision specialist doctor through Lighthouse. She asked why we saw him since she was already following Jacob. I told her that they offered, it was free, and they wanted their doctor to see him. So, I asked her why she did not put him in glasses if she knew he was farsighted and that the Lighthouse people wanted to know too. Her answer was that she feels that his eye turning and vision issues are related to his brain damage. She told me that she knew he was farsighted, but did not plan on putting him in glasses until later on.

My thinking is even if he can't see because of his brain, what would it hurt to have put glasses on him when she realized he was farsighted just to see if it helped? What would it have hurt? What if she was wrong? Low vision people seem to think the crossing is from being farsighted and that he has lost a lot of his window of opportunity because she did not put glasses on him early on.

Oh well, he sees the low vision doctor on Friday we will see what happens.

Sunday, November 7, 2010

Won't EAT!

Ahhh, Home from another LOOONNNGGG weekend at work. Jacob has not been eating well in over a month. My sister had the kids this weekend. She got Jacob to eat less than 12 oz by mouth all weekend :-(. He fights, arches, keeps his mouth open, and simply won't suck still. I don't know what else to do with him. I did almost everything I could to night to get him to eat for me. After much scream, chocking, and gagging he ate a whole 3oz give or take...he had at least an ounce on his bib.

Jacob has an eye appointment tomorrow with Dr. Ikeda. I can't wait to talk to that woman and see what her reasoning behind never putting glasses on my son was. I have pretty much been told he missed his "window of opportunity" to see normal because he went over a year being so severely farsighted and missed all the developental things infants have with their vision. I would not be so mad if she would not have been documenting the entire time that she knew he was. WHAT THE HELL? Was she just writing him off because he has Cerebral Palsy? Oh well I will update again tomorrow night.

I can't get over Ava and what she says sometimes. She continues to ask me for a baby sister all the time.  Especially in the last week she sits on my lap and tells me there is a baby sister in my belly. I keep telling her it is not time for a baby sister yet. She gets mad and yells, "YES YOU ARE!." The last time she said something to me was Friday night and she once again repeated that mommy has a baby sister in her belly. I once again tell her I do not. She then screams,You do have a baby sister in your belly and Daddy put it in there. WTF! Where did she get that from. LMBO!

I do not plan on getting pregnant anytime soon. We just don't have the money or the time off work right now. Jacob is so much work...one day we will though. Which brings me to mine and Jack's decision we have to make by next week I think???? I have the annual GYN appointment :-/ next week and I need to decide if I want this stupid IUD out. Without to much TMI I'm sick of the irregular more than once a month visits I get each month LOL but at the same time I don't need anymore "accidental blessings" right now.

Well, I hope this kids can stay well this week. Jacob sees the speech therapist on Tuesday. We have a week long trip planned to go see my parents and my sister in north AL the week of Thanksgiving. I'm excited my favorite day of the year comes after Thanksgiving. I LOVE BLACK FRIDAY! :-)

Friday, November 5, 2010

24 EEG

Wow, I just have to announce that I just took a shower by myself with no interuptions and no kids trying to invade my shower time. Yea for me! TMI but I just could not help myself. ha ha

FedEx oh FedEx where are you? You website said my packages were out for delivery at 6:36 am and it is now 6:09pm. I am very excited. Monday I order the boys new carseats. Decided Ava got new carseats when she graduated from infant carrier to foward facing and that the boys should to. Plus Ava excess carseats are getting a little ratty (Ava has3 yes 3 and I only have 2 cars) Anyway, that is what is "out for delivery" 2 Graco Nautilus 3-in-1 Car Seats
I have several friends that have these car seats and love them. There are lots of great reviews on them. I can't wait to get them installed and take the babies for a ride. Oh my 2nd reason that justifies the new carseats is 1 of the 2 seats the boys are sitting in is maxed out. I must be doing something wrong. Jacob does not fit in it at all and Andrew hardly fits. Jacob is currently sitting in a Sun Shine Kids Radion 80. I have 2 Ava still sits in the other. I love everything about the seat except its lack of a cup holder. The 2nd Seat is a Britax Roundabout that was given to me by a friend. He kid sat in it for a long time. I think he was atleast 2 or 3. The babies are 30ish inches and only weigh between 21-24lbs and I have the straps totally at the max and I can hardly get the the buckle snapped without cutting of leg circulation. Oh well...to my point once more...I CAN'T WAIT FOR MY CARSEATS TO GET HERE!!! It is pretty sad when you look forward to a carseat. I guess this is when you know your a dedicated parent lol.

Jacob went in for a 24 hour EEG that started yesterday. If you refer back to a preivous post that was titked Infantile Spasms. I talked about why we felt Jacob needed this study. They hooked him up to all the wires and started the test at 11:45am yesterday. He did well for most of the day considering Jacob's irritability. They did have to call the EEG tech in at 2:30 in the morning to fix his leads 3 of them came off. Poor lady had to drive from an hour a way to get there...oh well, sure she gets paid well to be "on call." Still felt bad though. His neurologist came in to see him last night while I was out. Jack was in the room and talked to her. Per Jack this is what was said: She said she reviewed some of the results from earlier that day when they 1st hooked him up. She said that she seen "seizure like" brain waves, but no actual seizures at that point. She said she was going to increase the doses on his Klonipine and Phenobarb and possibly start him on a 3rd medication. Jack did not know what the 3rd medication was. She also ordered blood labs for the morning to check on his current levels of his medications.

We left the hospital around 1pm today. The only change so far is just a change to his Klonipine. I suppose if she makes anymore changes it will be after she has reviewed the entire test. We had to push  a button and write down anything he did that was "seizure like" in a patient diary thing.

Poor baby was not happy last night. He cried a good part of the night and scratched the crap out of his faces. He still has a hacking cough and has continued to vomit up atleast half a feed once a day. I am struggling with feeding him. He does not want to suck on the bottle. He keeps his mouth open and makes noises or bites the nipple. Not sure if this is related to his CP and that he is loosing the infant suck reflex so he is having a harder time eating vs it just him being sick. Maybe his throat is sore. He sees the speech therapist on Tuesday. I'm excited to go. She has been out for 2 months. I ready to get back in the swing of things again. Not sure I will do the hyperbaric again. Seems like what he did improve on was only temporary anyways. Not sure if it was really worth the time, gas expenses, and effort. Though what did improve was great while it lasted. Wouldn't mind having my own hyperbaric chamber. I would put him in it every day. I think long term use daily would actually help compared to an hour a day (if you are lucky) for 40 visits, whick Jacob ended up getting less than 25 dives due to his ear infection and 6 day hospital stay. :-( Maybe if he had all 40 I would have seen more lasting improvement who know. I talk myself back and forth if I will try it again...:-/


Babies are up from nap time. I suppose I should go get them.
Jacob in his head gear


This was Jacob trying to eat his blanket in his sleep.


Just thought I would share my most favorite picture EVER! This is Ava and Me Oct 08(I think) at Sea World, Orlando, FLorida. I love her smile.
 


Monday, November 1, 2010

Pictures

Jacob does not hold his head up in the gait trainer and the PT won't suggest any adaptive equipment to help, so I made my own LOL


I woke up this morning to find Andrew and Jacob covered in these red marks. I was thinking maybe it was bug bites from Trick or Treating last night, but when I put them to bed their faces were not like that. It is even on their hands, arms, and legs.

Andrew face really looks bad :-(

As I was taking this pictures to upload, I found Andrew on the couch heading for me. That little bugger climbed on the couch by himself to get to the table to get the remote LOL

My baby Giraffes on Halloween

The Trick or Treaters left to right: Michael, Natalie, Calob, Gavin and Ava

Sunday, October 31, 2010

Another day..

Today was the boys' 2nd Halloween and Ava's 4th...last year we pushed our sweet little Mickey Mouse babies around and Ava dressed as an Angel. I remember visiting Logan after everyone went to bed that night. :-( I think about all I am missing out on, not getting to show off my triplets together. They should all be crawling and standing now. Instead I had a very hyper wild baby giraffe named Andrew and a special grouchy giraffe named Jacob tonight. Logan did not need a costume he is already my Angel Boy. Yoi know I used to call him this when he was alive, I used to make up songs and sing to him about being mama's angel boy. Never thought he really would be my angel boy in Heaven.  Ava was a sweet bumble bee she got lots of candy and is currently sleeping with her bag of candy next to her daddy in my bed.

I don't know what is wrong with me. I've continue to have feelings of jealousy and self pity. I am having a hard time shaking it. I have met a lot of triplet moms since I became pregnant with my boys. I have befriended several. It does not bother me to be around them. I am happy to see their children so healthy and developing well. Where I have this issue is watching mine and not getting to enjoy what everyone else has. Why can't I have 3 little babies all about to start walking. Why can't I even have 2 babies that are starting to walk. Jacob has not been doing well over the past few weeks. He is having a lot of "seizure like" activity. He is starting to get tight again, he is not eating well at all and he is arching like crazy. From an illness state he is doing better than he was a little more than a week  ago, he is just not being the Jacob he was 4 or 5 weeks ago. I am getting concerned he is back sliding more. This is really hard for me. Watching Jacob bounce up and down with sickness and health just brings back so many painful memories of Logan's health issues. I have fears that he is slipping farther and farther way. Will he eventually just be a vegetable? Will he even show emotion anymore? Anyways for some reason it just hurt tonight when I was looking at pictures some of the triplet moms posted on their facebook pages with their triplet strollers and 3 babies dressed in sweet costumes. Will I ever get over this??? Its so weird. I hate feeling like this. I don't really think it is so much the "triplet" part, but just the big healthy baby part and how I don't have 2 or 3 big healthy babies. I am so greatful Andrew is doing so well. I thank God for his health everyday.
Things I used to except and just trust in God with have become very hard. I had total faith that Logan was going to be okay. I truly 100% believe God would heal him. God did not heal him like I wanted. He did heal him, he took away the pain, and gave him ever lasting life in Heaven. While he knows no pain and no sorrow, my heart feels as though it has been ripped out of my chest. He is gone..gone...gone...gone....gone. Some days it doesn't even seem real. I wake up and wonder if it was just a dream...Then I poured my heart into my surviving triplets every one who reads this blog and know me knows this,. I have nearly dedicated my life to Jacob. My heart can't help but feel heavy. The  more he does not respond, the more illnesses he has, the more spastic, the more seizures, the less he eats, the more I see his toes curl down, etc I don't know how much I can handle. I think back...a child on the brink of death should be much harder than cerebral palsy, but for me its not. With Logan like I have wrote before. I didn't really see any long term uncertainty with him. I knew their were only 2 options either his lungs start getting better or they don't. I was blanketed in prayers. I know without God and all the prayers that were sent up for me and my family, I would have probably have been in the loony bin. Now, I feel alone. I know God is always with me, but I just feel alone though. I hate that Jacob has to be the way he is. I REALLY HATE IT! I don't understand why God chose me to be his mother, I don't understand why he has to struggle so much. Why did Logan and Jacob have to have TTTS causing all these things to happen to ours sons and our family.
Jacob's smile can light up a room, he touches people. I know people are intrigued by him. I wish I could just hear from God...I want to feel that comfort I felt before. I hate uncertainty. I hate thinking about how he is going to get big one day and I may not be able to take care of him anymore. How on earth will I be able to take care of him when he is BIG! I had to stop myself from hyperventilating the other day as I thought the worse. For sure God would not take him from me too. Then I think how life would be without him. Though some might see this as a relief (like the lady who wrote the article about "Good mom's" would do the right thing and put a pillow over their child's face. She wrote the article about how handicap kids were burdens, drains on society etc) me just seeing the article really affected me. I realized with all my self pity I have, that outside of him being "normal" I would not change him. I do not want to have to walk though my life without him or my other babies. He is my challenge and I am going to do my best to give him everything I can. I think off all the thing he will need one day and I will continue to believe that God will provide for me. So, I try not to worry as much about how my bathroom is going to have to be remodeled one day to make it handicap accessible, much less how I may need a new home. My wants for him are great. I would love for him to have his very own hyperbaric chamber. I want him to have a stem cell transplant. I want to do anything and everything I can to give him everything he needs to grow and function. I want to give him the best and latest therapies available. I NEED TO WIN THE LOTTERY TO FUND THIS!

Sorry you have read through my rabble this was just me releasing my feeling and giving myself a pep talk to keep getting through the days.

Wednesday, October 27, 2010

Answering prayers

I believe God is answering some prayers for use this week. We are all still mildly sick, but much improved from the past 2 weeks. Jacob was solely tube fed for nearly 2 weeks. he has been eating by mouth since yesterday, but I am having to thicken his liquids quite a bit his suck is kinda weak and not as coordinated has it has been .Hopefully over the next week as he continues to get better this will improve.

Jacob had an extremely good day with his physical therapist. When he has good days like this, it gives me a glimpse of hope to see what his potential is. Unfortunately he does all these wonderful things 1 day and then stops doing them for weeks and months! Anyways we will rejoice in what God brings me and be grateful for the "good" days and continue to pray there is many more good days to come.

Jacob was very alert and active today. He was standing well in his walker and when his hands were held. He has had very good head control today. He was sitting with his arms supported on a table without arching backwards. He was mimicking sounds. For example,  I asked Andrew if he wanted to go night night and Jacob blurts out very loudly I might add nightnightnightnightnightnightnight LOL Andrew and Jacob were crying night night in unison yesterday. The PT also had him rolling and laying on his side. He really tries hard to roll, he gets about 3/4 of the way there, but he just doesn't have the coordination yet to complete the task. He extends his arms and opens his hands up. I have notice less of him clenching fists and retracting arms to his chest. Anyways I almost wish I would have taken a video of how well behaved he was being today.

His vision is another issue though...I think his glasses are doing nothing for him now. If anything they are making it worse. He hardly tracks at all. He will still follow the spinning light globe thing, but does not look toward the TV anymore. He does not look at your face or follow you when you move across the room. His eyes cross in alot, which I guess is a good thing. It show that he is trying to see. His appointment is this Friday. I hope the doctor has positive things to say and solutions for him. I think maybe a different prescription.

Andrew is doing very well. As always he tends to do everything his own way in and in HIS order. He is now attempting to climb furniture. I caught him standing on the shelf under the end table in the living room. He pulled himself up and then proceeded to put his feet up on the shelve and climb. He gets really mad when he realizes he can't get on top of the table lol. Yesterday he tried to put his foot on the couch and pull himself from the floor to the couch. LOL he might be able to climb on furniture before he can even stand alone or walk. His babbling has become clearer. He is saying mama and da-de to the correct person. He also cries night night when he is tired and ba ba. I am still working with him trying to get him to clap his hands and wave bye bye.

Ava is obsessed with showering, washing her hands, changing her cloths 1000x a day and brushing her teeth and hair...I suppose this is a good thing LOL. She is getting better at school. She is warming up to the other kids a little and is starting to interact with them.

Jack and I are on mission weight loss. We started Body by Vi milkshake things. Basically like slim fast except you make your own. I am only on day 3 but I am STARVING! I don't like the taste of the shake power itself it is cream flavored. You can add whatever you want to them to flavor. We have tried strawberries and bananas, pineapple, and peanut butter and banana. Pineapple did not mask the taste I do not like, but a teaspoon of peanut butter and an entire banana does the trick. It is actually pretty darn good. We eat small snacks 2x a day I try to keep them under 150 calories and then a healthier dinner. I SO look forward to dinner every night now lol I know this is not a "good" or permanent form of weight loss, but you loose weight fast and Jack and I are so heavy that is what we need right now, then we will transition over to weight watchers again. I have an appointment for a lap-band orientation on November 11th I believe. I am still going to look to that route unless I really impress myself over the next few months. I'm hoping Jack joins me..I need to see if his insurance covers it still.
I feel like I am forgetting something, but oh well it will give me something to write later.