"Sometimes Miracles Hide"

    One of the homeschoolers, who has a baby with Downs, lent me a book called "Sometimes Miracles Hide".  It's based on this song posted below.  The guy's voice is kind of cheesy, but the words are fitting.  Just thought I'd share it with you!  Hope you enjoy!


http://www.youtube.com/watch?v=LgZvax0NKSg&feature=related

YeeeeeeeeeeeeeeeeeHaaaaaaaaaaaaaaaw!

     We're having a Barn Dance tomorrow!  YAY!  We haven't had one of those in a while.  Mom is always up for a good time, and she thought it was a good way to raise a little extra money for a medical bills. 
    Kathryn, my sister, is on her way home right now, since she couldn't miss out on this great opportunity.  HA!  You never know what kind of men you'll meet.  If you find a man who can dance in tight jeans and cowboy boots, you've got yourself a winner!! haha  Anyways, I'm a little nervous for her to see her/our room.  I tried to warn her that her room looks different.  She said it's okay, and understands, but she said that she might still cry, just a little bit.  Ah well...I guess it's the way it has to be, right?
     Eva, on the other hand, has hit the terrible 2s early!  Great!  We are still trying to decide if it has something to do with her having a cold,  just being grumpy, or if that's our new "SPUNKY" daughter.  We're hoping for the cold explanation.  She learned the dreaded word, "NO" just last week, and has been exercising it quite frequently.  Another word that she throws out there when we are in public is "OWWW!".  Whenever she doesn't want to do something, instead of crying, it sounds like we are hurting her.  Oh the drama!  I think part of it is us constantly leaving her home while we are at appointments.  It's getting harder and harder to leave her.  I don't know how working moms do it.  I feel terrible every time I walk out the door.  Poor thing, and it's only going to get worse before it gets better.  (I'm not sure if I mentioned this in a past post...)  When I go for my C-section, no one under the age of 14 will be allowed into the hospital to visit.  At Children's hospital, no one under the age of 16 is allowed to visit.  Sooooo.... I'm hoping that baby #2 and I make it out of the hospitals soon after our surgeries.  I don't think I'll be able to make it 4 days without seeing my Eva, even if she is spunky. 
*(Picture: my big girl on her first pony ride last weekend)

Catering: A new way of life

     This passed week my mom was offered a catering job from a friend.  We split the food in half with her, and made the other half. This job included 4 pretty desserts, salad, and salmon pasta with roasted veggies for 100 people. (I feel like I'm forgetting something!  I'm sure we made more than that!)  Anyways, the cooking was all done Friday night, Saturday morning, and last min on Sunday.  The lady who ordered the food asked last min if someone could serve it.  Since it was such a last min request, no one was able to do it.  SO, Me and my 8 1/2 month pregnant belly volunteered.  Paul came along to help carry the heavy things, THANK GOODNESS!  We worked from 2pm until 8:30pm (on our feet) the whole time.  Every muscle in my body ached.  It was the most exhausted I've ever felt while being pregnant, but the PAY made it the most rewarding!  haha  The next day I had an appointment at Good Sam, where they monitor the baby's heart rate, and simultaneously monitor my contractions.  Most of the time my contractions are between 8-12.  That day, the Monday after catering, they were 35-50!!!  Haha  OOPS!  I guess I did work hard, and the numbers proved it!

A little late on my updates

I started writing the following last week...sooo...it's a little out of date.  I'll do the best i can remember everything!

     Well, today has been filled with a lot of phone calls to insurance companies, Children's hospital and Jim Bunning's office.  It looks like the baby will be covered right away by my insurance.  Thank goodness I kept my insurance while I was in Canada!  I called Jim Bunning's (a Kentucky US Senator) office to see if they would write a letter to possibly speed up Paul's paperwork process.  I'm not sure that it will help at all, but it won't hurt to try.
     Youth 2000 was this weekend in Covington!  SHEW!  We were tired.  It started on Thursday night with the core team meeting and then Friday morning with set up and sound check.  Poor Paul was exhausted all weekend from driving 34 hours in a 73 hour period and returning from Canada only Friday morning at 1am.  Saturday Paul and I were asked to give a witness talk to all of the kids (about 450 including adults) with only 20 mins to prepare.  I was scared out of my mind, but I think the Holy Spirit works best when you are completely taken off guard like that so that he does all the work.  Ann, the head of ALL Youth 2000s, thought our story would be a great opportunity to give a pro-life talk.  My mom was kind of worried about my emotions, but I think I held up better than she did.  Go figure.  Anyways, we talked about how we found out on Easter that we were having a baby.  Then we shared how our ultrasound was done 6 weeks later than normal due to my sister's wedding.  Had the ultrasound been earlier, we might not have found the Spina Bifida.  AND, if that were the case, then the baby probably would have been air-cared from Northern Ontario to Toronto without me, which would have been awful!  Anyways, that was our 1st little miracle. We went on to tell them that through friends, family, and prayer, we began to realize how much of a BLESSING this little baby girl is going to be, and already is.  Of course, we expounded upon this for a good 5 mins, but that was the bulk of the info.  It was neat to be able to get up in front of all of those people and to share how God has touched our lives through this little baby.  People approached us many many times throughout the weekend, all extending prayers, and some with amazing stories of their own.  (One of the CFRs Priest also offered up Mass for our baby girl. LOVE them!)  Actually, one of the boys who played music with us for the weekend had an inoperable, cancerous, brain tumor at the age of 6. (I think that was his age.)  The Doctors were not hopeful.  He only did chemo for about 4 months because he had some sort of a severe allergy to it.  Long story short, the tumor disappeared!   He was completely cured.  His dad told us that when he asked his 6 year old what he pictured when the doctors were examining his head, his son replied " I see the archangels fighting the tumor.  I see Michael, Gabriel, Raphael, and Uriel".  His dad was confused, and told his son that he had never heard of an Archangel Uriel.  However, his son assured him that Uriel was an archangel.  SO, his dad called Mother Angelica to ask about Uriel.  She said that Uriel isn't well known, but is an archangel!  (Here's a blurb on him: 

      In the eighth century, the Christian Church became alarmed at the rampant and excessive zeal with which many of the faithful were revering Angels.  For some unknown reason, in 145 A.D. under Pope Zachary, a Roman council ordered seven Angels removed from the ranks of the Church’s recognized Angels, one of them being Uriel. )  
I'm sure his son didn't learn this in his 1st grade class.
     N-E-Ways....I thought that was a really cool story!  Overall the weekend was AMAZING, grace-filled, exhausting, and totally worth it!   

Baby Girl at 30 weeks/ Sept 23rd

We are still trying to figure out who she looks like

October 8th, 2009

    So, while I'm sitting here waiting to hear if Paul made it across the border or not, I thought I'd give a little update.  Paul is on his way back to Kentucky now.  When we called the border they told us the required papers (which we got) and they said that he should be fine to live here as a visitor for 6  months while he is waiting for the rest of immigration to go through.  However, the border guards often make up their own rules and give you a hard time.  Sooooo.....since I haven't been able to contact him since 8:30pm (it's now 12am) I'm hoping he's just busy driving!  Sheesh!
    Today we went for a Fetal Stress test, which we will be doing twice a week until the baby is born.  Originally the Dr told me that we were going to have ultrasounds twice a week...but I think he worded it the wrong way or something.  Anyways, one day a week they will monitor the baby's heart beat for 20 mins...and then the other day they will measure the amniotic fluid ( this IS done through an ultrasound, but it won't be fun like a regular ultrasound).   Mom was my partner in crime today, since Paul was gone.  They monitored the heartbeat, and baby girl kicked that doppler the whole time!  I noticed that her heart-rate ranged from 134 to 160.  When the 20mins were up the nurse told us that they were kind of worried about the heart rate and the range of it.  So, they sent us in for an ultrasound just to make sure everything was okay.  I'm still a little baffled, because the ultrasound tech acted like the range in the heart rate is a good thing.  She said everything looked great  and gave us a couple more pics. Yay!  Mom was disappointed because she wanted to see the baby's back.  She's still hoping for a miracle, and thought since Fr. Michael Scanlan (a Very holy priest from my school) blessed the baby this weekend that maybe she was healed.  Oh mom. I guess you never know though!
    This weekend is Youth 2000 Covington.  Paul's playing drums and I'm singing.  I'm kind of counting on God's grace to get us through the sleepless weekend sane and with my voice intact enough for the the entire weekend! We'll see!

October 5th, 2009 BIG DAY at Children's Hospital

*10:45am- Appointment with Neurology/ Neurosurgeon at Childrens Hospital

The hospital is amazing with so many colors, hardwood floors, decorations hanging from ceilings, video games everywhere (which were shut down for flu season), flat screen tvs with cartoons on, brightly colored world maps on the walls, and of course the taste of Cincinnati down in the food court (Gold Star Chili, Greaters Ice Cream, Larosa’s Pizza....and Starbucks.)

However, walking through the halls caused a flood of emotion. There were kids with masks on and with their hair gone from Chemo Therapy. It broke my heart. It really put things in to perspective and made me grateful for our situation. On the other hand, there were little 4 year olds walking around with walkers instead of riding in wheelchairs. Though I don’t know, I assumed these children had Spinal Bifida, and the walker is one of our hopes!

We met with the Neurosurgeon after talking with the nurse and then the physicians assistant. The neurologist had our MRI which we looked at on a screen and discussed. I asked, what felt like, a million questions. She was excellent at explaining everything. (Side note: All of the Drs that we have met with so far have explained things in a way that we understand without talking down to us. They always ask what we know first so that they do not repeat something that we already know. They have been WONDERFUL!) One of the first things she informed us of was that the baby does in fact have the more severe form (and most common) of Spina Bifida, Mylomenigicele and not the more minor form of called Menigincele. This means that there IS part of the spinal cord in the lesion, thought it is only a small part. We knew this from the ultrasound a couple of weeks ago, however, they were unable to see the Cerebellum in the ultrasound. So, another trait of Mylomenigicele is Arnold Chiari Type II. Arnold Chiari Type II is when the Cerebellum ( the nut shaped part in the back of the brain) is pushed down into the spinal column. Our baby is missing the membrane and fluid surrounding the cerebellum, which then allows for it to be pulled into the spinal column. There are a wide range of side effects to this defect. Some babies have the their cerebellum flattened and pulled half way down their spine, and they have no side effects. At the same time, there are babies who have the cerebellum just sitting on top of the spine who have trouble with apnea, swallowing, and tightened vocal cords. There is a small percentage of babies that do not survive. SO, the doctors can’t tell us exactly what this means for us, we will have to wait and see. Right now baby girl doesn’t have hydrocephalus (fluid on the brain), and the ventricles look normal, but this can change at anytime and can happen up to a year after she is born. Hydrocephalus often occurs after the lesion is closed because the spinal fluid no longer has a place to go. They fix this with a shunt placed directly under the skin on the top or back of the head. This then runs from the ventricles in the brain all they way down to the bladder where the fluid is released. Shuts often get infected and clogged, and have to be replaced numerous times throughout life with surgery. SO, we are praying that we won’t have to get a shunt.

We spent an hour and a half with the neurosurgeon which made us late for our next appointment at 11:45am with the Developmental and Behavioral Pediatrics doctor, Dr. Sonya Oppenheimer. (Amy, she wrote the book that you lent me!) After an hour long goose chase of trying to find the Dr. we met with a different Dr at the same office. She met with us, since we will be visiting there A LOT once the baby is born.

*1pm: (late) Social Services

Discussed bills, support groups, and benefits for children with disabilities.

*1:30pm (late) consultation with nurse

*2:00pm Genetics counselor

Have a 4% chance that we will have another baby with spina bifida so we will get a prescription for Folic Acid when we think we are going to have another baby. Also, it increases the chances that other family members will have babies with the same defect. (We ate Gold Star, Greaters and Starbucks while in the meeting because we have NO other time to eat! Kuddos to Paul!)

*3pm Team Meeting with Dr. Polzin, and 10 other people involved in process, including 4 other Drs.

We again went over the MRI but had no gotten the official report from the radiologists. With our last ultrasound, they had thought that the lesion was covered with skin. After the MRI they realized that the lesion just has a think lining and is only partly covered by the skin. The thickness is good, because it keeps the lesion from leaking. Our ultrasound will be scheduled for 39weeks (I turn 39 weeks on Thanksgiving Day). I won’t be able to hold the baby until after her surgery. They will transport her from Good Samaritan Hospital to Children’s Hospital within a couple of hours of birth once she is stable. The surgery to close her lesion will be between 24 and 48 hrs after birth, as long as there are no emergencies. (They would operate earlier if the cyst is leaking spinal fluid.)

With the MRI they were able to pin point the lesion. It is at the L4 part of the spine. (Lower lumbar region) This affects the muscles from the knees down, but again does not rule out the muscles above that. Even though the lesion is this low, the bladder and bowels are usually affected. Babies/ children are usually put on a "bladder program" which often includes drugs, catheters and maybe even a tube that goes from the bladder through the abdomen to the outside.

When the baby is born they will do LOTS of tests. The goal is to retain all movements, muscle mass, etc. for her entire life.

If everything goes well, baby will be out of the hospital within one to two weeks. I will be in the hospital btwn 2-4 days. They hopefully will give me a pass to visit baby at the other hospital. No one under the age of 14 is allowed in either of the hospitals because of the flu, so I am REALLY going to miss my little Eva!

This is a LOT of information! I thought I would keep this as a journal at the same time as keeping you updated, hence all of the details. Thanks for reading!