Jordy's Birth Story

I really thought that at some point I had typed up Jordyn's Birth story....but I guess it was not on here.  Maybe it was back in my "myspace" days, but who knows.  So I thought I would share it.  All of our family and friends that have been around for years know most of the details, but some of our newer friends might only know some or none of her story...and quite a few people have asked since her seizure diagnosis came back up, as well as why we are constantly at appointments for her, yet she is never sick....so here goes.

First a quick review of Abby: Abby was born at 34 weeks weighing just over 4lbs.  My water had broke and they decided to just go ahead and let her come rather than try to stop it.  I got a few rounds of steroids for her lungs in my 36 hours of labor.  She was in the NICU for 6 weeks for mostly a prematurity condition called "Bradycardia".  When she left the NICU she was about 6 and a half lbs and still so fragile.  All in all, she is a very normal 7 year old now.  She has a very weakened immune system still and up until recently she was always still super tiny, being at least a size or two behind what she should be and hanging out in the 1-5th percentile for her age.

Fast foward 2 years....

After getting over our fear of having another preemie, we decided we would put it in God's hands, and we found out we were expecting again :)  Right away I was super concerned with everything.  Before Abby I had 2 miscarriages, so that was my first fear, was just to make it to my 2nd trimester.  Next up we have my horrible pregnancy experience with now a 2nd baby.  We are talking puking anywhere from 3-15 times a day.  It was definitely not quite as bad with my 2nd as it was with Abby.  They were nice and put me on Zofran from the beginning before it got out of control, which I truely think helped. I was still sick every day, but it was much more managble.  At my first check up they told me I had a 50% chance or higher of having another preemie, so they decided to put me in the high risk clinic, where I got seen about twice as much as I would if I was not high risk.

For the most part my pregnancy was very uneventful.  I was less sick and I was able to enjoy it slightly more than with Abby.  We found out we were having another girl and were thrilled.  We both wanted girls so we couldn't be happier.

I made it to my next goal of the 34 week mark and she still was nice and cozy inside of me.  36 weeks came and I was starting to get uncomfortable and nesting like crazy.  My dr told me she said there is no way I would go past 38 weeks, and that she wouldn't let me.  (I had trouble delivering Abby at 4lbs, so I was a little concerned at what a 7+ lb baby might do to me). 38 weeks came and went and they decided to let me go longer. I was still okay with it at this point, but something inside of me said it wasn't a good idea.  My head kept saying "this is a good thing...you will have a big healthy baby to BRING HOME WITH YOU" but my heart kept saying she needed to come...now.  After 40 weeks I pretty much stopped answering my phone, didn't sign on line, and pretty much started getting annoyed at everyone asking me if I went into labor yet.  I was sick of everyone saying "Well at least you wont have a preemie".  Yes I know that...and that is what kept me going, was that it would be different this time.

Finally they put in the order to induce me at 41 weeks...but there was no empty rooms.  We called every morning at 4am, and was finally able to get in to be admitted at 41 weeks and 5 days!!!!  Finally...I was going to get to meet my sweet baby girl.  And I am full term..in fact OVER due, so everything will be perfect...right?

Well everything was perfect.  They started my pitocin and I was actually already about to go into labor, on my own.  I was already 3 cm when I got there, so the pitocin just gave me a little jumpstart.  I was progressing so perfectly.  At 7cm and about 7 hours into my labor, my water broke..on its own.  At just over 8 hours (umm a fraction of the time it took for Abby!) I was just about 10cm and ready to push.  The checked me one last time and the dr had a very confused look on his face.  Jordyn was stuck.  She was turned the wrong way, causing her chin to be caught on my pelvic bone.  He told me right away, I now had a 50% chance of a cseciton, but she was just fine.  Her heart rate was good and she didn't seem to be in any sort of destress, so they said they wanted to try to manually turn her.  All of you moms can probably figure out what manually turning entails....but luckily I had already gotten an epidural (I was on pitocin, I wasn't trying to be super mom!)  BTW, this Dr..had the biggest hands I have ever seen in my life and seemed to be the worst candidate possible to try and turn her.  After about an hour, he said he wanted someone else to try...someone who had a really good success rate with turning babies.  So he comes in...tries for about an hour...she just doesn't want to move.  At this point they said she is still doing fine, and I really do not want a csection after going through labor and all of this.  They left and came back with a teeny tiny dr who had the smallest, skinniest fingers ever...seriously, she looked like a skeleton.  They said if she can't do it, we give up.  After a total of 3 hours of them trying to turn her, we see that her heart rate is slowly starting to go down and we all said its enough, we need to get her out.  I was considered an "emergency" so they had me back into the OR within about 20 minutes...and she was out about 20 minutes later.  I got really sick and they needed to give me meds to make me go to sleep.  I needed to make sure she was okay before I could though. She wasn't crying or making a sound...and there were probably 15 doctors, nurses, and techs surrounding her.  Finally after about 10 minutes they walked her past me as they were taking her to the NICU.  They simply said "she was having some breathing problems"...and then put me to sleep. 


I woke up not too long later to no baby, and no hubby, and them still "working on me".  They were having trouble stopping the bleeding and was about to get a transfusion when they were finally able to get it under control.  That was pretty dang scary waking up all alone like that....but Geoff had gone to be with Jordyn.  I had to go to recovery for a bit, and then finally to my room where Geoff is waiting for me.  I was told I could see Jordyn in the morning. Of course I couldn't sleep for crap even on massive amounts of pain killers.  In the morning a nurse came and taught me how to walk again.  That was terrifying too.  I just wanted to do it and go see my baby...

ugh, and here it is....

We finally get to go see her.  We are met by a Dr while we are scrubbing into the NICU. They warn us that her birth was super traumatic and she needed help breathing so she was intubated.  We were also warned how bruised up she looked.  My heart was beating probably 200BPM at this point.  I saw her and I just immediately burst into tears.  A nurse was standing there with me telling me she was okay.  But that didn't help me at all.  Looking at her was the most heartbreaking thing ever. Her face (from what I could see of it...her tubes covered so much of her) was covered in bruises, welts, and open sores)  They told me I couldn't hold her until she was extubated and stable.  Later that day, 3 to who knows how many drs came in to talk to us about Jordyn.  First we found out she was having seizures.  Next we found out she was having possible random organ problems (kidneys, liver....). It just seemed to be one thing after another.  I think at one point she was having trouble digesting.  She was on IVs for the first few days, she even had one on the top of her head for a while that freaked out Abby.  The first 4 days in the NICU were the LONGEST 4 DAYS OF MY LIFE.  Finally after 4 days, she was extubated, and I was finally able to hold my baby!!!!  She was still having breathing problems though...she had what is called "stridor" which made her sound like a little mouse, and she aquired the nickname "squeakers" for a while.  Eventually after about a week in the NICU she had some significant improvements. Her face was healing up so quickly, and you could hardly see any trace of the marks (they told us she would probably have permenant scaring).  This was the first time we experienced what we like to call "Jordyn's crazy healing powers".

Over the course of our 2nd week in the NICU, Abby was allowed to come in and visit more often as we got to know the staff more.  Abby actually got to meet Jordyn that first morning, but she just seemed so confused. It was one of the saddest things ever when we had to tell her we couldn't bring her sister home with us that day.  She was sooooo excited about being a big sister...she was more involved than any other kid I have ever seen, and she was only 2 and a half.  Even with how smart she was, she just didn't understand.  We had gotten her so excited about getting to hold her and snuggle her in the hospital, and then...she wasn't even allowed to touch her :( Ugh.  This was when I completely lost it again.  After the first week though Abby seemed to be a little more understanding that sissy was sick and needed to get better.  Even in the NICU though, Abby was the most amazing big sister ever.  She brought Jordy presents, wanted to hold her and never give her back every time, and was always kissing and loving on her constantly.

Finally after exactly 2 weeks in the NICU, they said she could finally come home!  Before we could take her home we had to speak with tons of drs again.  The main Dr we had to stay in touch with was her neurolgists at the hosptial.  They tried their best to explain her seizures and how they were caused by blood on her brain.  They said she will most likely have long term damage from this, ranging from small things like slight learning disablitlies to as severe as cerebal palsey.  They just kept saying "Expect the worst, but hope for the best". Which is what we have done for the last 4 years. We finally got to bring our sweet girl home with us.  She was completely tube free and just came with lots of paperwork, medications, and information on followups with several different speciality Doctors over the couse of her first year of life.

The crazy thing is...I actually didn't realize how scary/crazy/serious her birth actually was until the day we brought her home.  We were enjoying having her home with us finally...and I was sitting on the couch, feeding her, and reading her discharge paperwork.  It was then that I read the details of exactly what happened.  First, it took them longer than a normal amount of time to get her out for an "emergency csecion".  She was so far down and was one step away from crowning when her chin got stuck, so there was a lot of pulling and tugging to get her out.  When she came out she was in fact NOT breathing...at all.  She had an apgar score of 1.  The only reason they even gave her a 1 was because she had a heartbeat of about 10bpm.  Yes, that is correct. 10 bpm.  Full life saving  resuscitation measures were used to bring her back.  She was with out oxygen for at least a few minutes.

By the time I was done reading her discharge report, I was bawling my eyes out (yes, I cried and prayed..A LOT the first few weeks) and in shock of what my baby girl had gone through.  But we did it.  There is no way we would have made it to where we are with her with out God and a strong loving family.

There you have it...Jordyn's birth story (spared a few details that most do not want to hear about)

It's still hard to believe what our family went through 4 years ago.  We gave everything over to God because we knew he would take care of her...either on earth or in Heaven.  But we couldn't help but be full of gratitude to Him for allowing us to keep her.  I just can not fathom our life without her in it. She has been such a Blessing to our family.  She brings us so much joy, laughter, craziness, silliness, and lessons of patience.

Very few people have seen photos from Jordyn's first few days of life.  If people ask, we have always been willing to show them, and it's only been the last 2 years or so that I was able to pull them out and show people, without crying.  Be warned, some are kind of graphic looking....

 First time I saw Jordyn

A Few days old...Abby is warming up to her being in the NICU now.

Off her ventalator and breathing on her own!!!!

First time Abby got to hold her baby sister.

While I was pregnant...Abby was just so obsessed with her baby sister.  She had planned a Happy Birthday Party for Jordyn for when she was born.  She was so excited about it.  She was going to bring cake and party supplies to the hospital.  But things didn't go as planned we helped her change it to a Welcome home party for Jordyn.  We had lots of friends come and celebrate an amazing day with us. (I think it was the day after or so that she came home)

Jordyn and Seizures

Today I took Jordyn to her follow up to find out the results of the study done that was used to measure her brain activity and check for any type of seizure activity while she sleeps (EEG).  You all know we had a big party to "keep Jordy up" all night the night before.  She did great and she actually fell asleep for the test.  Honestly, we walked away thinking that nothing would come of that test.  We really didn't expect anything abnormal, especially because the actual sleep part of her test was only about 15 minutes...I thought, what could they possibly diagnose with her in 15 minutes of sleep???

Well today we saw the same Dr who requested the EEG for her. She was very surprised to find what she did too.  She told me she was expecting nothing. She really thought that either her possible seizure was just some weird night time randomness, or just a one time thing, because, what were the odds that I SAW her doing it in the middle of the night????

Her test showed quite a bit of what the Dr referred to as "pre seizure activity" near the back side of her head.  Meaning, that it could possibly have lead to another seizure had she stayed asleep.

You all know what Jordy's birth story is and what she went through.  Her neurologist strongly agrees that her current situtation is most likely from her traumatic birth she had, and the birth injuries she experienced.  She did explain to me though that baby seizures (which Jordy had) are VERY different from regular seizures.  Baby seizures can come in any shape or form.  Jordy had what was explained as a "tick seizure"....basically her arm/hand would just repeat the same motion over and over again.  They discovered she had some blood on her brain, of which was causing the seizures. 

Now because of that, her seizures have probably become more of the "regular type" like I saw a few months ago: Full body convulsions, and her eyes rolled back into her head...lasted less than a minute, and she went right back to sleep.

It terrifies me to know that she may have possibly been having seizures all along, even after she was taken off her anti seizure meds and cleared by her neurologists in Texas as a baby.  Because, most likely, she is only having them in the middle of the night, while sleeping. 

I would love to say how mad we are at WHMC in San Antonio...for causing her to have such a traumatic birth, and definitely some aftermath because of what she went through.  We would love to blame them for what happened, because, it really was their fault...but it's hard to be upset about an incident that gave us our beautiful princess.  Everything that happned was all part of God's plan for Jordy and our family. She may have been a completely different little girl had she not gone through what she did....So, it's hard to admit, but in some ways, we are grateful for what we went through. I would never wish our experience on any other child or family, but... It gave us the most perfect Jordy, and so many life lessons that had to be taught to prepare us for raising her.

From here a few things are going to happen.  First of all, they decided to immediately put her back on anti-seizure medication.  It is the same one she was on as a baby, but hasn't taken in over 3 years.  Next we are to get an updated MRI done of her brain.  I have actually been pushing to get one done for a while now, but I couldn't convince any of the doctors here that she needed one.  She hasn't had one done in years, and I really just wanted to see what sort of changes have occured with the blood on her brain.  I guess now they finally have to.  With a child as young as Jordyn, they have to put them to sleep so they will stay still for the MRI which can take upto an hour.  We also need to get some bloodwork done in about a month to see how the medication is working in her body...they want to check the levels and see if it will need to be increased or decreased.  Finally in about a month we will follow up with her neurologist and see where to go from there.

Trip/medical update!

I know, I know, we got back from our trip like 2 weeks ago, and I am just now getting around to posting the update I promised.  I was sorta putting it off because there was so much, and I just haven't had a large chunk of time to just sit and type.  But here goes...

So, as you all know, we went down to Texas to have a bunch of medical stuff taken care of. If you don't know everything, please refer a few posts down...or you can click here. 

First off, I will start with Geoff's surgery.  The day after we arrived, we had our first appt., which was Geoff's pre-op appointment.  It took a lot longer than expected...we had to the surgeon, and then we had to go all over getting paperwork signed off.  We ended up being there about 5 hours.  The following morning, we had to be at the hospital at around 8am.  Thankfully, my awesome friend Sara took the girls ALL DAY.  She was seriously a life saver because they would have gone insane at the hospital for 8 hours (after being there for 5 hours the day before!).  He finally got called back around 11am, and his surgery didn't start til about 1pm.  His surgeon came and spoke with me at about 3pm, saying he was out of surgery and it went well.  They had to cut about a 2 inch circle out of his skin and fatty tissue, and flapped it over...drilled about half way into his skull and placed the screw/holder.  Then they sewed him back up with part of the screw sticking out.  Most of you have seen the photo...it looks like he has a snap on his head now.  He had to go to post-op for about an hour, and then they would call me, and bring me to recovery with him until he was ready to leave.  We went to recovery where they only wanted him to stay about an hour.  I know, it's insane, that an hour before they were drilling into his head.  He was pretty out of it, and then he started feeling really sick.  They gave him pain meds and zofran to help with the sickies.  Not long later he was discharged and we picked up the girls, and then went back to the hotel.  The first 2 days he pretty much just slept and was sick.  We ended up going back to the ER the 2nd day because he was really sick, causing him to puke, which was causing his head to bleed from pressure.  They said it looked okay and to keep an eye on it.  One week after his surgery he had a follow up appointment.  I was shown how to take care of it and he was cleared to go back home, but on convelsant leave for another week.  Everyday, before he showers, he takes the cap off the "snap"  gently sorta washes it off in the shower.  Then we let it air dry for a few hours.  Before bed I apply antibiotic ointment around the "snap" and stiches (which have now fallen out).  Then I cut a small hole in a piece of non stick guaze, and place it over the screw post, and then snap the button cover back on.  He will go back to TX in a few weeks for a check up to see how it's healing.  If all goes well, he will be getting his hearing aid in about 2-3 months.  We are VERY optimistic about this one finally working.  When I am cleaning the post, he said he can "hear" the sounds of rubbing and stuff...which means the bone is conducting sound as it should when the hearing aid is placed. yay!

Next up, we have Jordy.  Jordy was seen by a team of doctors to evaluate if her birth injuries are affecting her learning, behavior, etc.  We were never concerned with the thought of autism with her, but that was the main thing they were check for.  After spending a few hours with her, they said that she showed absolutly ZERO signs of autism, which they said is very rare that they can actually say ZERO in these evaluations.  They could definitely see the things we see as far as her having to be told over and over again before she will actually listen and understand what we tell her.  She is super super super smart, but on the slow side for her learning milestones (counting, abc's, etc)...but not enough to be very concerned at this point.  As they told us at birth, she needs to be followed and then tested once she starts 1st grade to see if there are any learning disabilities that might show up later.  The one thing they did say we NEED to do was enroll her in some sort of preschool.  We told them we were considering a couple of different things for her here, and they strongly agreed with us that she needs to go to the Montesori school just off base.  They teach in a child led way which would be beneficial to her, and sort of jump start her learning process to prepare her for kindergarten the following year.  We started the registration process and she will hopefully begin in early September.

Lastly, we had Abby's appointment with a neurosurgeon a couple of days before Geoff was cleared to leave.  For this, we had to go to Brooks Army Medical Center to see him.  First off, I did not like the communication that was had before hand.  I guess he had agreeed to squeeze us in, for whatever reason...but new abolutly nothing about why he was seeing us.  He hadn't seen her scans, or her medical files....so we had to go over everything.  He agreed on the diagnosis of the cyst on her brain.  They are semi-common, and very rarely anything serious.  He said he starts to worry when they are over 10mm.  Well...Abby's is 11-12mm (depending on who is reading it).  Yet, he seemed not worried at all, even though he had just told us he worries when they are over 10mm.  He basically just wants us to have her scanned again in 6 months and see if there are any changes.  Now, I agree, there is nothign that can really be done until we see if it is changing/growing.  BUT, I also know how fast things CAN go downhill. Not saying I think they will...but we JUST found this thing, and who's to say it might not double in size in 6 months.  I think we need to get a 2nd opinion, and then have her scanned again in about 3 months instead.  Sure, I am probably being over cautious some might say...but this is my daughter's brain we are talking about.  I felt this Doctor lacked the compassion that we are truely concerned. Almost annoyed that we we were worried of what could possibly happen.  Yes, I am sure he sees these everyday...but we do not.  If we are able to see another dr (not sure yet if Tricare covers 2nd opinions) and they say the exact same thing...I will be much less concerned, but still probably want a scan done earlier than 6 months.  At this point, we (mostly me) are just needing prayers for peace and understanding of what is going on inside her smart little brain of hers.

So, as you can see, pretty much all "good" news came out of the trip. It was a LONG 2 weeks.  And it was a LONG 2 day drive each way.  BUT...the girls did AMAZING as usual for car trips.  Hardly any complaints from any of us.  We got a lot of good family time and got to do a few fun things down in TX like see some of our best friends(including getting to go to Abby's best friend's birthday party!), get some sun (too much for some of us), eat some yummy food, and go to Sea World.