Just a little glimps of Children's Hospital...

Another 3 weeks has gone by....

     So, we're back in Cincinnati.  This time, however, we traveled a little lighter.  Paul drove Claire and I down to Buffalo (9 hours south or Iroquois Falls) while we left big sister Eva at home with Paul's parents.  I was so upset about leaving Eva at home, in a different country, thinking that she would NEED me.  Of course, when I left her she simply said "Bye mommy" and hasn't asked for him since.  Ha, I think I need her more than she needs me; what a social butterfly!  We drove down on Sunday, and Claire and I flew out on Monday.  Poor Paul had to drive back alone, and will have to drive back down on Wednesday to pick me up on Thursday.  It's a busy week!
    Tuesday we had a visit with the Doctor.  Claire was a whopping 16lbs 9oz!   What a fatty!  Claire checked out pretty well.  Nothing has really changed in terms of symptoms.  Her head size (95th percentile) is relative to her body. (she's wearing 6-9 month clothing....clothes that Eva wore till she was 10-11months old.  Granted, Eva was petite, but Claire is huge! )  This appointment gave me the opportunity to ask a bunch of questions.  I read a book on hydrocephalus, so a had a lot to ask.  The reason she would have hydrocephalus (for all you medical people) is due to the Chiari II malformation.  Her cerebellum is blocking the flow of cerebral spinal fluid thru the forth ventricle.  He says that sometimes this can work itself out, and that if anyone is in the 5th percent on not developing hydrocephalus with a Chiari II, it would be her. So, we're still hoping for the best.  Dr. Maugans said that if there is a significant change (A LOT more fluid) in her MRI in 3 weeks, he would probably shunt, even if there are no symptoms.  But, if the change is gradual, then he will just continue to follow her.  Again, we'll just wait and see, which is alright with us!

  For those of you who are not in the area on Northern Kentucky, I thought I'd might share an article with you....

http://home.catholicweb.com/covingtondiocese/files/Messenger/Feb_26_10_Messenger.pdf.

    After Paul and I gave our "baby testimony" at Youth 2000 in October, people who worked at the Diocesean Catholic newspaper in Covington wanted to do a story on us.  We finished writing the story the night BEFORE Claire came into the world, but it took a while for everything to come together.  So, the writer kind of re-wrote our story from what we had sent him and our blog.  This is the result.  Actually, the article on page 6 (the article right before ours) is of Mother Seraphina.  She is the reason we named Claire after St. Gerard Majella.  She gave us the novena to St. Gerard at Youth 2000 and we faithfully asked for his intercession.

Not the Best, BUT not the Worst

  Well well well, it has been a while since I've last written.  I honestly thought that the blog would be done by this point.  I don't have internet at home (it only works half the time anyways), so I will update you while we are back in KY.  As most of you know, we went back home to Canada 3 weeks ago.  The Dr. gave us the "okay", and simply sent us home with Claire's records and imaging.  Being home was fun.  I thought it would be very difficult adjusting to two babies, instead of one, but it hasn't.  Of course there are those times when both babies are crying, and I just want to pull my hair out.  It's in those times that I force myself to take a deep breath and think, "I am so blessed to have TWO babies that are able to cry, and that Claire is safe".  And then the moment of anxiety passes.  It's just crying, right? 
    At home in Canada, we have had a Physiotherapist working with Claire.  She comes once a week.  We were referred to a program in Ky called "First steps" since Spina Bifida can cause some developmental delays. While we are in Canada, we are working with the same type of program.  Claire has been holding her head to the right side for a while, which they think is just an environmental occurrence. (I laid her on one side too much, or something.)  Anyways, it has gotten better with exercises, and we will be starting to do neck stretches next week.

     We are back in Kentucky as of Sunday night, for a little less than a week.  Monday (yesterday) the 15th Claire had four appointments at Children's Hospital. There has been a lot of snow here in Ky, and the roads were filled with cautious, and crazy drivers.  We also discovered that they need to hire MANY more plow drivers..since all of the roads were filled with snow.  They just aren't equipped for this type of weather.  Southerners! haha   Her CT Scan was at 8:30am.  They were suppose to sedate her, but she was so perfect that it only took 5 mins without sedation.  Thank goodness!  She actually thought it was pretty cool because the scanner was painted with little zoo animals, and they shown a projector onto the scanner to light up the animals. Her eyes were  so excited, going crazy looking everywhere.  It was so cute.  We went straight up to Dr. Maugans office (Claire's Neurosurgeon) after the scan.  Dr. Maugans brought the picture of the scan and told us that Claire is developing Hydrocephalus.  "NO!!!"  He said that he was really surprised to see the changes, since he was predicting her prognosis would remain the same.  Naturally we were surprised too, since the doctor was so confident.  Anyways, her ventricles are enlarged and there is some fluid elsewhere.   He said that there is MORE than a 50% chance that she will end up needing a shunt.  However, he said that sometimes this resolves itself, and we'll just have to wait and see.  So we were given a list of symptoms and will be watching Claire more closely.  Instead of seeing us every 2 months as originally planned, he wants to see us back in 3 weeks and then 3 weeks after that for another MRI and follow up with him.  It is a slow progression, so we are still able to go home, and if she does have symptoms, then we'll have to see Dr. Maugans sooner.  So, we'll just be praying that it resolves itself.  Shuts typically have a lot of problems, and have to be replaced all of the time.  It's usually a life long commitment, so, it's a big step.  Here's a diagram of a shunt   http://www.nlm.nih.gov/medlineplus/ency/presentations/100123_1.htm  (click to the different pages..1,2,3 etc.)
Charismatic Claire!

   After the Neurosurgeon, we saw the Urologist, Dr. Jackson.  She is just as wonderful as Dr. Maugans. Based of her previous tests, and what we have told her, she is doing wonderful.  However, she wants to do more testing in a couple of months- bladder ultrasounds, and a VCUG (an x-ray   http://www.radiologyinfo.org/en/info.cfm?pg=voidcysto).  We will not be able to totally tell what her overall function will be until we start potty training.  They just want to make sure now that she doesn't have reflux of urine into her kidneys, and doesn't have too much pressure built up in her bladder.
    Our final appointment was at the Spina Bifida Clinic.  We finally got to meet Dr. Sonya Oppenheimer, Director of the Division of Developmental and Behavioral Pediatrics (http://www.cincinnatichildrens.org/svc/find-professional/o/sonya-oppenheimer.htm) who wrote the first book that we received from our midwife about spina bifida.  She said that Claire is a picture of health, and will see us back in a couple of months.  The Spina Bifida Clinic monitors everything from Urology, development, Orthopedics and the list goes on.  So, we will be meeting with them for a while.  It's a one stop shop!  Oh....I almost forgot...Dr. Maugan also referred us to a Ophthalmologist at Children's so that he can keep and eye on her (haha...i made a joke!) Hydrocephalus, and because Hydrocephalus can cause lazy eye.
     Some good News....Claire has NO trouble eating and has doubled her weight!!  She weighs between 14.5 lbs and 14.13lbs (she started off at 14.13lbs yesterday morning and finished the day at 14.5lbs.  haha..we had a lot of weigh ins!)  She's wearing 6mo clothing and is the exact same size as Eva was when she was 6 months.  What a big girl!
    Soooooooooo.....That is the update!  On the way home to Canada,  Paul has a Physical Appointment for Immigration in Toronto.   In between all of this, Paul is looking for jobs, because he gets his Green Card on March 23rd, at his interview in Montreal!!    Yippie!

Our little Claire Bear

     Claire has been doing really well at home!  We have been watching for hydrocephalus, and no symptoms of it yet.  We'll continue to watch for it through her first year of life.  Claire is still pooping and peeing without any help!  Yay!  We went to get Claire's stiches taken out this past Tuesday, but they weren't ready to come out.  We'll go back this Tuesday and see what happens. 
     We have had SO SO much to be thankful for this Christmas!  What a blessing and miracle our little Claire has been.  Thank you Jesus!  At Midnight mass on Christmas the choir sang a song about a baby who was sent by God to do amazing things.  Of course they were talking about Jesus, but I couldn't help but think the same of our little Claire.  It's amazing what God can do by using " the least of His".
     Before Claire was born, while meeting with one of the Neurologists at Children's, the Dr. informed us that there was a small chance that our baby would not survive.  This information kind of went in one ear and out the other, since I was making myself concentrate on the positive to be able to get through it all.  Well, sadly a friend of a friend of ours had a baby girl a couple days before us, who also had spina bifida.  Their baby girl survived  her first surgery, but did not make it through her second.  This put things into perspective even more.  It makes us appreciate every little smile and moment we have with our little Claire.  Please pray for this baby's family!

   Also, Paul and I have been thinking about the fact that one of our doctors, prior to coming here, had mentioned aborting Claire.  How many people receive the same news as us, and actually go through with an abortion?  Look at all the miracles that have happened, just because we trusted that God would take care of us.  Our little baby WILL be able to walk!  These people, in fear, are stripped of parenthood, and stipped of the many blessings that can occur.  It really hit home, knowing that if we had not been pro-life, that Claire might not have existed.  Wow. Praise God that we know the truth about abortion, and were able to accepted God's plan!  Pray for those considering abortions.

  Hope you all have had, and are having a very Blessed Christmas Season!  We Love you and thank you for everything!

Claire's Surgery .....Miracles really do exist.

     Sorry again to all who have been asking how Claire has been doing. I'm so bad about setting up time to update this thing. We REALLY appreciate all of your concern and prayers! Did I mention that we have the best friends and family Ever!?

     SO, Claire's surgery was on Wednesday, December 9th. Counting down to that day was NOT fun! While I was looking forward to being able to lay my baby on her back, and putting her diaper on normally, I was not looking forward to the trade off. Like I said earlier, we didn't know if her prognosis would change, or if the surgery would present more problems. Plus, I was dreading the pain that I would see my little baby in. We arrived at Children's at 7am. I was up all making sure that Claire was eating enough, since she wouldn't be allowed to eat from 5am on. They brought us back the the prep room to weigh her, measure her length, and head and to just get her checked in. They had a hard time finding a hospital gown for such a small baby, so that had to call the NICU upstairs. They also brought warm blankets to make sure that her core temp was warm before the surgery. The Anesthesiologists, Spinal Monitor, and Dr. Maugans (Neurosurgeon) came by to answer any questions we might have. Spinal monitoring is when they stick little needles (like acupuncture) all over your body to make sure that they don't lose any functions through out the body while dealing with the spinal cord. Dr. Maugans said that the surgery itself would be about 2 hours with 45mins of prep time before and maybe 15 mins after. He said that he would meet us after wards up in her room, and that nurses would keep us updated through out the process. We asked Dr. Maugans how often he saw this kind of situation, where the patient has the Chiari II malformation (in the brain) with the Mylomeningocele with no real side effects. He said that he was in Boston the week before for a conference and he saw two similar cases out of California, but they weren't Mylomeningicele, they were MyloCYSTicele. Those were the only two cases, and he had never seen a case like ours personally. (Can we say MIRACLE!?)

     The nurses let me hold her the whole time, and even let me carry her two the hallway outside of the operating room. The nurses assured me that they would take good care of her, and then the anesthesiologist took her from my arms. Another nurse took us to the waiting room area. It was 9:30am. It was a helpless feeling, knowing that our baby was going under the knife, so young, with a bunch of unfamiliar people, and without her mommy and daddy right there! I just kept picturing her crying and her arms flailing from being frightened. I don't know why, but I was more worried about them messing up her oxygen intake than anything else. One thing i was really grateful for, was that they didn't hook her up to any machines, IVs, or take any blood until after she was asleep. That way, she didn't feel any pain. In the days prior, i couldn't bare the thought of watching her go through that.

     We sat in the waiting room for a while, trying to occupy our time. We attempted to watch 5 different movies, but couldn't concentrate on them. Then we looked up the origin of all the flags that were flying outside. Ha! At least we learned something, right? There was a screen in the waiting room that told us when she was in surgery and when she was being prepped. The Secretary there called us up at 10:50am to tell us that the official start time of the surgery was 10.37am. We went down to the cafeteria a short time after, and coincidentally met up with a Spina Bifida clinic lady down there. She just happened to remember Paul from the last time we were at Children's. Gosh these people are wonderful! We walked back up to the waiting room, hoping for some news at around 12:40pm. I figured they would be calling us in a couple mins letting up know that they were finished. Well, 12:50pm came around, with no new. It's ok...they said that they might take an extra 15 mins after surgery to clean her up. Soo...I set my new mental clock for 1pm for the surgery to be done. 1pm came and went again. AHHH!! Now I starting to get very anxious! The secretary didn't call us over the loud speaker until 1:50pm! I JUMPED out of my seat to see what she had to say. She told me that the doctor would be meeting us in the private waiting room in a couple of mins and that she would call us back up when they were ready. I was relieved, but really nervous too, because Dr. Maugans originally said that he would meet us up in NICU. Everything went through my mind. What if they weren't done with the surgery, and something had gone wrong?! Gosh, the 5 or so mins that we waited in the private waiting room seemed like a life time! Finally, when Dr. Maugans came in, the first thing he said was, " The surgery is done and she did great." AHH...what a relief! He brought a digital camera in to show us her spinal cord! It was amazing! He said that her spinal cord was actually in the shape of a trumpet, which is common, but he hadn't originally thought this was so. The picture of the spinal cord was really white and clean. I was surprised. He also said that, with the spinal monitoring, they thought (though it's not COMPLETELY accurate in babies) that all of her movements and bowel and bladder control remained the same. Dr. Maugans said that, though she may seem to have less control in the next couple of days, that he predicted that everything would return in a couple of weeks. He drew us a picture on the dry erase board showing us that her spinal column in that area was really shallow compared to normal. He said that he didn't foresee any problems since there was a lot of tissue, muscle, and skin over top of spinal cord protecting it. He also said that she didn't actually have the MyloMENINGOcele, that it was a MyloCYSTOcele. He explained that this was actually better because there was no fatty tissue (as he has previously predicted) surrounding the spinal cord, and there was less of a chance for her developing Tethered Cord, and Hydrocephalus. YAY! Even better news than we had hoped for! He said that he had never personally seen a case like this before. The MyloCYSTOcele ( http://journals.lww.com/neurosurgery/Abstract/1985/01000/Terminal_Myelocystocele.8.aspx) very rarely occurs with the Arnold Chiari II. The two cases that he had seen in Boston, that he had talked about earlier in the day, were exactly like this. We were so ecstatic! When Dr. Maugans got ready to leave the room, we both jumped up and thanked him! I thought Paul was going to give him a hug! Paul even said to him, "I feel like you are our new best friend!" He is such a caring doctor, and shakes your hand with both hands every time he greets you. It gives me goosebumps just thinking about how wonderful everyone was. God definitely took care of us!

     When we walked out of the room the secretary told us that there was someone waiting to see us. I looked around the bend, and it was Maria and Mimi, the Family i use to work for! I almost jumped into Maria's arms, I was SO HAPPY! They had brought us a card, gift, and prayers! Ha, when we left to go up to the 4th floor where Claire was, the secretary said, "You are a sweet couple. I am happy for you!" It took us by surprise, because we only talked to her a couple of times throughout the day. I guess you never know when people are paying attention to you- all the more reason to be a witness of Christ's love at all times. :O)

     Paul and I were both on cloud nine. We were almost skipping up to the 4th floor (NICU). We were told to wait in the waiting room until a nurse called us back. We waited an hour before we went to ask what was going on. The receptionist told us that Claire had been in there for an hour already. Oops! When we finally saw her, my heart about broke in two. For the two weeks prior, Claire only let out one small burst of a cry when she was hungry, and then waited patiently to be fed. However, I could here her crying/ whimpering from down the hall as we were walking in...and i KNEW it was her. (she was actually laying on her back when we walked, which we had never seen before!) It's funny how you know your child's cry. It was a sad sad whimper, that was filled with pain. I wanted to pick her up so bad, to "make it all better" but i didn't want to move and hurt her either. The nurse said that she could eat if i wanted to feed her. I did NOT want to hurt her, so I had the nurse hand her to me while I sat in a chair. We were told to leave her flat for 48 hours, even while she ate. Claire acted as if she didn't know how to eat anymore, which was a drastic change from the two weeks earlier. She was so drugged and out of it. She was also REALLY puffy from her IV, not to mention the two monitors plus two IVs she was hooked up to. She had red dots all over her arms and legs, and 6 scabs on her head from the Spinal monitoring. It brings tears to my eyes thinking back to it all. I think God just puts you into survivor mode when you go through things like this. Only when I think back now am I emotional about it. I woke up every couple of hours to make sure that she ate. I also got more brave as the night went on, since the nurse that was on duty was SO ROUGH with handling her. They only gave her a small amount of morphine that night, and then Tylenol every 4 hours after that. Paul and I were able to sleep in the same room with her. They had a VERY small pull-out love seat, which we found very comfortable in our exhausted state. They also had a nice bathroom with shower in our room. Claire's IValarmed every time i held her that night from being kinked.  The nurse would come and fix it, and it would go off 2 mins later.  It was ridiculous.  Needless to say, we didn't get much sleep that night.  I woke up at 9am to Dr. Maugans, two other doctors and a couple other nurses in our room checking Claire's back.  Oops!  At least Paul was awake.  The doctors said that Claire's incision looked good, and that as long as she was eating, she could probably leave by Friday.  WHAT A SURPRISE since we had been told that we would be in the hospital for AT LEAST four days.  Later that day we met with the head of the Spina Bifida Organization in Cincinnati.  We were able to ask her a lot of questions since her daughter had and is going through it all.  Claire looked and acted a lot more awake, and was more herself by this time.  Thank goodness! 

      The biggest problem that we faced in the hospital was keeping her incision clean.  Since it is so low, almost every time she pooped, it would go up under her bandage .  They even tried using these things called " mud flaps" to keep it from going up there.  As a result, the nurse had to change Claire's dressing EVERY TIME she pooped.  It was AWFUL!  She screamed so so hard every time they ripped that tape off of her back.  She had little fuzzy hairs there, and those were all ripped out, like a wax.  She still ( almost 3 weeks after surgery) has sores from them ripping the tape off of her back.   Later on that day Claire's leg was really swollen because her IV that was there was finished.  They called in a PIC (sp?)  nurse to redo her IV.  I really didn't want her to have to go through that again, but she had two doses of antibiotics left.  I told our nurse that I wasn't going to be able to look.  She said that she would stand there and play mom if i needed her to.  But, I couldn't run away from my baby when she was in pain.  It took the pic nurse FOREVER to find a vain in her puffed up little arms.  She put a turnicate on both of her arms a couple of different times, and used a special light to try to find them.  We had "suggies" (sugar water) that we used to dip Claire's pacifier in an attempt to keep her happy.  The first IV didn't work, so she had to do it a second time.  Our super tough Claire didn't even cry!  Ha...I was more upset than she was!

   The rest of the day was just full of feeding, changing diapers and meeting with the Physical Therapist and breast feeding nurse.  The PT was still impressed by how well Claire was doing with her leg movements, and told us to keep up the leg exercises.  Friday I was SO excited to get out of there, because I didn't want Claire  to be poked and prodded any longer.  PLUS it meant that she would no longer need her bandage on her back.  That would save her a lot of pain!  However,  one of the doctors told us that Claire was "no longer in pain" and that she " didn't need tylenol anymore".  They said that tylenol is bad for the liver and they didn't want to damager hers. I was shocked!  How in the world could she not be in any pain only 2 days after her surgery?!  I listended to them, but I was NOT happy to follow their orders!  Looking back, I wish i would have  gone ahead and given her just a little bit of something after we had gone home, because she was still in a lot of pain.  Oh well.  We were actually informed on Thursday that Paul's Parents were flying into Cincinnati Friday night.  It was a surprise for both them and us!

Surgery is TOMORROW, December 9th.

     Claire is doing well at home. As soon as we came home from the hospital on Thanksgiving, I tried to nurse     Claire. I wasn’t expecting her to catch on, since she had been using a bottle for the 3 days prior. However, she latched on right away and hasn’t stopped eating since! The only problem we’ve run into is that her diapers don’t really fit her little butt with the lesion in the way. This makes for A LOT of laundry, but we’re ok with that! At birth Claire weighed 7lbs 2oz, and was 20.5inches. When she was released from Children’s she was down to 6lbs 14oz. One week later she was back up to 7lbs 3oz, and weighed a whopping 8lbs yesterday!! We’ve been trying to get more fat on her before her surgery. I guess we’ve succeeded.

     Claire’s Surgery is TOMORROW, December 9th at 9:15am. We have to be there at 7am, and Claire has to stop eating by 5:15am. We’ll see how well that goes over. The nurse said that the surgery will take appx 4 to 6 hours. I told Paul that it probably would have been easier for us, emotionally, if Claire had had the surgery right after she was born. I think I was a little more mentally prepared for it and we wouldn’t have had all this time to bond. Now, I’m scared out of my mind. It’s ok though, I know a ton of people are praying for our little girl. Thank you! God has been so faithful to us, thus far, and we have no reason to doubt.