1,2,3, how many doctors do you see?

As I sit here looking back at my calendar, everything becomes a haze of memories. I can't decide weather to tell every little detail or skip some of the daily struggles. I think I should start by saying at this point Drake is still only less than 4 weeks old.

My mother(Marian) began coming every weekend to help with the laundry and rocking of the baby. She also accompanied me to several doctor appointments. It seemed great to have an extra set of ears to hear all the information thrown at me so I could go home and explain the best I could to Shane. He went to as many doctor appointments as possible, but that became MY full time job. Shane went back to work after Drake was two weeks old. He has been the BEST dad/daddy/father any child could wish for! He continued to work 7 days a week and still not complain when I needed him in the middle of the night to help.

My best friend Kennette started coming to rock Drake several nights from 9 p.m. till midnight. We would set an alarm clock to get up for her to go home. It was the one way she thought she could offer relief before the all night crying spells began. (At this point it seemed Drake would cry even when you touched him.) My mother-in-law(Carole) helped during the weekdays weather it was to listen to me or share a cup of coffee. I also had a baby nurse(Ms.Thelma) to help. She was there to hold Drake through the nights while we tried to settle back in to reality. Now that I look back it sounds like I had it made. Maybe I should have bought a box of bonbons and enjoyed it. For some reason though the sound of your child crying consistently took away from even the simple things!!! Even the joys of a newborn.

So the doctor appoints started flowing like hot lava. You could see them coming, but couldn't run fast enough to get away and there was certainly no way to stop them. After the appointment with Dr.Kirse(ENT) at Brenner Children's Hospital, we decided to have all possible doctors in one location. It would take a year(or two) to tell about all appointments held. I will do my best to summarize the majority and hit on the important stuff. Looking back at my 2005 calendar, Drake had an 1-3 appointments every week for 17 weeks in a row.

Dr.Hill (gastroenterologist) was an important doctor. Little did I know at the time he would be the one to play a key part of Drake's well being. He began putting him on Previcid to help with reflux. It seemed he was on a different kind of medicine from the pediatrician and Dr. Hill said sometimes it's known to cause headaches. Great, first I was starving my child, then providing headaches. He did reassure me this wasn't colic, I'm wasn't sure if this was good news or not, since colic usually subsided at some point in time.

The next set of people we started seeing was at the CDSA(Children's Developmental Services Agency). This is a place where Guilford County provides services for families that need help. I remember talking on the phone, in desperation, to a woman who was an Occupational Therapist. Her name was Kim Millsaps, she began to give me tips on getting Drake to use his bottle better. He seemed to not enjoy taking his milk like most children. I thought wow, here is someone that deals with this daily and I had never even heard of what an OT does. We went to visit the CDSA for temporary therapy with Kim. Silly me,thinking "we won't need such help for long". There we were introduced to Nancy Norman (head of the CDSA) who showed our family they really did care about Drake. And then Brooke Juneau with Family Support Network / M.O.M.S.(mothers of miracles).

We were assigned a "case worker" Carmen Ward. Yet another angel sent to us. I knew there was a long list of doctors and therapist for us deal with, as it turns out God gave us Carmen to over see the beginning of this endeavor. She began setting us in place with all the help we could get from therapy to support groups to contacting doctors when I didn't think I could make one more phone call. I was told she would be with us till Drake was 3 (CDSA protocol). Once again thinking, Yea Right, we won't need it that long.

Sometime in between all this, we began seeing the Audiologist(Claudia Mason) who helped get Drake his hearing aid! Which by the way took him 2 years to decide sound wasn't such a bad thing. He cried at every appointment which made it very difficult to see if he was adjusting to the sound the BAHA hearing aid offered!

Next,the Geneticist (Dr. Tamison Jewett), she proceeded to explain to us the unknowns of Drake and her deepest concern for his well being. She is doctor which has true compassion for her patients and took two hours explaining Drake's abnormalities and unusual features. That wasn't an easy appointment either, but one of importance. I guess this is where I realized we had a child with "Special Needs". You NEVER think you are going to hear those words come out of your mouth when taking abut your own child! I don't guess there is anyway of preparing for such moment. Drake decided he would be full of "moments"!

We saw the Cardiologist, Urologist, Physical Therapist, Nutritionist and a Develpomental Pediatrician(Dr. Mary Christiaanse, I'll tell her tale later) all with little excitement! Which was a good thing in my book since no news was good news! We even began Drake on Massage therapy(Wendy Cheek). She would come to the house out of the kindness of her heart to work. It was the first time I recognized Drake could relax. We joked it was the "Jesus Position" for him. After he finally let go and relaxed, he would lay there flat on his back with both arms spread eagle. I thought to my self what kind of drugs does she give him. Nothing it turns out, but there was this stuff called "Gentle Baby". It cost $75 for a half ounce bottle, I would have painted all the walls in my house if I could have. It was truly liquid gold, some sort of essential oils that seemed to help when Drake smelled it. Only a couple drops on your finger tips would do!

The optomologst(Dr.Weaver) proceeded to tell us how difficult it was to determine his ability to see. This was one doctor that got a zero in field of personality. He wasn't very polite or personable, which seemed odd since ALL the doctors till now went out of there way to explain there views of our son. He was actually down right abrupt, and it was like pulling teeth to get answers. After a couple months of once again consistent crying, at each appointment, he explained Drake was blind and might have no vision AT ALL! This was the first time I went for a second opinion at Duke to see a Dr. Buckley. He explained that Drake was in deed blind, but to what degree couldn't tell. He assured me that Dr. Weaver was one of the finest doctors he knew and thought Drake was seeing (funny analogy) one of the best. So I decided to put aside the personality conflict and settle for a great doctor. But for those of you that know me well, I did have to tell him that I'm not going to settle on being told the bare minimum about my son and that my questions need to be answered with out argument! Since then we have gotten along beautifully!!

There was also the plastic surgeon(Dr.Argenta) who needed to see his ears. The shape and placement would be something to keep a measure on. He said when he was 5-6 years old we will talk the possibility of surgery along with Dr. Kirse. This will be an on going observation to deal with of Drake's deafness. Dr.Kirse had previously ordered a CT scan where Dr. Argenta found Drake also has a submucus cleft pallet. This is where he has a cleft pallet, but covered by a normal shaped mouth. We were told he would check back also in 5 years with this. There is a 50/50 chance weather children need surgery for this. Yet, again another reason he probably couldn't suck on the bottle well. Drake was also found to have a floppy pallet and narrow passage ways, the reason he sounded like he snorted and had a week cry all the time. The doctor was also concerned with Drake's head size(microcephaly) and shape. There was little opening at his soft spot(fontanel) and referred us to the neurologist.

This is Where the Whirlwind Begins!!!

Let me begin by saying, God has brought people into our lives to help us through this.Family and friends included! It has been interesting to see how people react to such news about a child. A person's true colors really do shine through at times. For those of you that have truly been there you know who you are. And we thank-you for being here and holding us high to help Drake and our family deal with such obstacles.
There was an angel nurse with Guilford County Dept. of Public Health, Joy. She came to weigh Drake and check on me.(Guilford Co. does this with all new borns now) I think the hospital gave her a heads up about the crying spells. (Thank-you Guilford Co. for trying to keep an eye on the new postpartum mommies!) Not to mention I was listening to Drake cry more than myself.(colic?) Her job was to come 3 visits in a two week period and check on the baby.I'm still not sure weather it was me or the baby she really came to check on. Joy came to our home for over 9 months and helped us understand the importance of advocating for our child, (she also has a special needs grandchild) Little does she know the impact she made on our lives.
She was very concerned with the fact he cried all the time and wasn't gaining weight. She listened to everything I thought it could be. She had plenty of suggestions to help, some worked, some didn't. I was desperate to do anything to get Drake to sleep and stop crying!!!
With in two weeks Drake had an appointment with the Audiologist at Women's Hospital. This is where we found out that Drake was indeed Deaf. She tried to explain he had a Bone Conduction Hearing Loss. This is where his cochlea works, but somewhere between the outer ear and inner ear, there was trouble.Probably due to the lack of open ear canals, who knows?. She referred us to an ENT in Greensboro,Dr.Jacobs.
The following week, I had a follow-up with my OB, Dr. Lowe. (which by the way delivered both my children) This is where I started taking medication for the crying spells. He assured me I didn't have to feel this way all day long. He never belittled that I might be crying because of my circumstances with the baby. I'm so grateful for the recommendation of the medication! Even though I still cried, it seemed I could focus on the importance of taking care of Drake and Grant!!! I think what might have done it for me was when I was sitting on the side of the tub one afternoon, crying AGAIN, when Grant came in. He asked"Mommy, why do you cry all the time?" Too much for a 3 year old to have to understand! That's when I thought I'd better "Put on my Big Girl panties and deal with it!" So thanks again to Dr.Lowe for allowing me to do so.(take the meds that is, he,he!)
So in the mean while, I was once again blessed, to have a group of family & friends from MOPS (Mothers of Pre-Schoolers), which started bringing my family meals. For almost 6 weeks, my kitchen was wondering what happened! Who ever could imagine that something as simple as not having to cook could be such a BIG deal? I will admit I missed 95% of theMOPS meetings that year. ( more details later)

So on to the First in the series of Drakes Medical appointments:
Dr.Jacobs (ENT), proceeded to talk to me about the minor concern of Drake's Ears and the BIG concern of his feeding habits. She played the biggest part of his nourishment and feeding issues. This was a time I was truly happy I hadn't tried to breast feed, since I found out he didn't even know how to suck!! Dr. J suggested a particular bottle called a Haberman Feeder. Never heard of one? Well, they don't sell them at Walmart or Target! My mom (bless her) ,who was with me at the time, and I had to go to the hospital and get them. At $25 a pop!!! Yes, can you believe it?, And that wasn't a 3 pack either like the Gerbers or Dr.Browns.
The concept with the Haberman was made for children with cleft pallets.( but, Drake didn't have one of those?) All the child had to do was to bite down or press their lips together on the nipple and the milk would drip or Squirt if you will, in the mouth. It came in a 5 part nipple and yes, the parts were TINY and go down the drain EASILY!!! But all the same he immediately got the idea and began feeding. Nothing like starving your child for 3 weeks, only to figure out this concept.
She also said she needed to refer us to another doctor because she felt Drake had more issues than she could handle. She began talking about different "syndromes". At the time, I had only heard of Downs Syndrome and began to panic. I think that was a moment of whirlwind when I realized things are far more serious than I originally understood.
Now I need to remind you that through all this Drake was crying approximately 20 hours a day. Of course The feeding was the first consideration of the culprit, only to find it didn't stop with a full belly.

Happy Birthday Baby Drake 08/24/05

The delivery was a c-section. Between the docs and ourselves, we thought it would be a better choice , not knowing how things would go with the "only baby in the world syndrome" delivery. Things went beautifully!! I think I even heard a sigh of relief in the room after Drake was born.

The first thing I noticed after they handed him to me was the shape of his ears. I said "somethings wrong with his ears!" They were the shape of little ruffled potato chips. I had never seen anything like them, cute, but different. The docs didn't say much about it. (I have since learned they seldom do)

Afterwards, Shane and the baby went off to do the first bath thing while I tried to enjoy my last few moments of rest and recovery. ( I had joyfully prepared for this moment since my first son "Grant" was a cesarean baby too.) After a while in recovery Dr.Dees, the pediatrician, came in to see me with an update. She told me that his ears had very small openings called aural atresia. The shape was also defected called microtia. At that moment I knew all wasn't well. Call it mothers instinct, call it paranoia or call it whatever you wish, but this was the moment I knew things were never going to be the same. I cried as they wheeled me to the room where everyone could come to celebrate in the birth. All I could do was cry every time someone asked me how we were. (maybe a little postpartum, maybe not) I think I stopped long enough to take a nap, just enough to wake and find Drake liked to cry too. I should have known he cried more than usual. Weren't they at least wait suppose to wait till you get home to start that?, not Drake. He wasn't feeding well either, but we were learning his ways the best we could. I did feel a little more confident with the second child, after all who can't deal with a child that cries every time you touch him? ( a little foreshadow for those interested)

The next day the pediatrician came in to tell us that Drake didn't pass his hearing screen. Shane and I still today laugh about how we talked that night saying"No problem, we can learn sign language!" Dr. Dees also mentioned his chin was slightly small. At the time we didn't think that was something to be too worried over. (they forgot to tell us he was considered "a poor feeder".) So four days later, we headed home to live happily ever after.

Ultrasound City

At this point, I began going to Duke for ultrasounds apox. every 2-3 weeks. Since none of the doctors knew what to expect they offered a couple test to try and help see the chromosomes better. AT Mt.Sinai University in NY,there was one particular test that set us back several hundred dollars.We felt the need to try this to find out what we were dealing with to help us make the best decisions and know what to expect. (Little did we know that we would spend the next two years trying to figure this out.) This particular test called the CHG, was the most advanced test to see if there was any parts of the chromosome missing(called deletions) or extras(called duplicates). The results showed neither and gave us an 80% chance that there would be NO problems. ( What a plan GOD had for us!!!) Who wouldn't like to go to Vegas with those odds?So we proceeded to go to genetic counseling, even though it seems all I did was cry. The counselor was very reassuring and good at explaining that it was nothing we could have done to change this. I was worried "Did I take too many Advil or maybe I should have been better about keeping up with those damn BC pills". That wasn't the good part, you should have been there when she asked us " is there any chance you two are related?" Of course I replied" Yes, we are married." The counselor said,"No, I mean like cousin, sibling, etc." And yes, she has had all of the above imaginable.So after that I decided to make the best of our situation and try to research this rare problem all I could. How it happened, why this occurred, what did others look like that had such a chromosome abnormality, what was the life expectancy? Wondering what I found? NOT A THING, zilch, zero, nada, nothing. I kept forgetting that Drake was the ONLY one in the world with this particular chromosome abnormality. This seemed to be the beginning of finding out the extreme rareness of it all and everything isn't so cut and dryLet me go back a little bit and explain what exactly A Complexed Balanced Translocation is. In the world of chromosomes every one has 46. 23 from the mother, 23 from the father. At conception Drake's decided to rearrange them little selves differently (called denovoed). In a typical "translocation", it occurs with only two. It's sort of like two pens switching tops. The counselor said this happens quite often and people don't even realize it. As long as there is nothing missing or added there shouldn't be any problems.(that is where the 80% chance no problem came from) With Drake he has 3 chromosomes involved,#1,4,&14. With out a picture to show, these 3 little buggers mixed themselves up and put themselves back together again. Think of 3 pens broken in about 5 different places and while mix/matching taped back together.So the counseling continued throughout the pregnancy, just to say what great parents we are.(like we didn't know this) The Duke doctor held several Level 2 ultrasounds(really cool 3D pics). They wanted to keep an eye on his growth from his head to his toes. I held my breath every visit and every visit showed a perfect(which he is) baby boy. They even did an electrocardiogram on his heart. It seems a lot of people with chromosome problems have heart trouble. Not Drake, once again, perfect!With that sigh of relief, we were ready to have a baby!!!(keep in mind aprox. 20 weeks have gone by since all this started)Now don't get me wrong I cried myself to sleep several nights. And some say why would you want to know or it's better not having that stress on yourself and the baby. For me and Shane we wanted to know! We wanted to prepare and know the facts. Little did we know, how little we didn't know.But it made us feel better, It made us stronger together. I can look back now and still to this day know I would have done the same thing!!!!!!!!!!

Drake's Story

This is something I should have done for Drake the day he was born. I will do my best to recreate the past and bring you to present day. Please keep in mind as you read our journey, this is not a published book, there has been no proof reading and I will make several mistakes in grammar and spelling. It's just me, really me, a mom trying to share Drake's story.

You must remember; "The days seem long, but the years short."-unknown. This has held so true for our family. Shane, Trish, Grant & Drake

When I was 17 weeks pregnant there were several routine blood test done . We were told to come back in for a retest, that our baby had a chance of Nero Tube Defects (ie;spinabifida). The tests were known to show false positives on such a regular basis, we opt to have a second one done. This time the results were 1 in 2 chances of Downs Syndrome. It was so unusual for these tests to show so different results we chose for an amniocentesis at 21 weeks. The results came back one week later. It's amazing how 5 weeks of waiting to hear everything is going to be okay, can seem like a eternity! I'll never forget the phone call from the doctor. The three of us(Shane, Grant and myself), were heading out to dinner when the phone rang. I can remember the whole conversation with Dr. Lowe. All he could tell me was " Your son has a something called a Complex Balanced Trans location of 1, 4 & 14. I've tried calling others and no one seems to know what this is. We've contacted doctors at Duke, Wake Forest and Mt.Sinai in NY. This is the reason for the false positives not showing correctly.We are referring you to genetic counseling to try and help you understand. I'm sorry for the lack of information we have to give you."
I hung up the phone after several, "I don't understand and could you please explain that again". I thought at the time doctors knew everything.
Have you ever had a moment where time seemed to stop and nothing you've ever been told or heard before seemed to matter or make sense? This was that moment for us. Not only had I forgotten from school that we each had 46 chromosomes, but that the miracle of each person coming to being was truly "A Miracle".