February 2002
02/01/02
Day two home from the hospital. Morgan doesn't cry that much. I thought babies for the most part screamed their heads off from dawn til dusk. Not Morgan. She sleeps so peacefully it makes you jealous. She's even nice and calm while Daddy struggles trying to change her diaper in less than an hour. She only seems to cry when she's hungry, and that's more of just a fuss than anything. Surely a blessing.
You know the phrase "hindsight is 20-20"? I have first-hand knowledge now that this is very true. Actually, it's not hindsight at all; it's you not knowing that God is putting his plan into motion by providing you with events to prepare you for the future. Let me explain.... Two years ago I began working for Lucent Technologies, working in their Optical Network Group. I started on January 3, 2000, agreeing to travel 25% of the 2000 calendar year. That year I spent roughly 282 nights in hotel rooms, airport terminals, and red-eye flights. Ina and I made an agreement that we would make the sacrifice then since we did not have children and the financial rewards would help us tremendously. In October of 2000 we again had to make a decision if I would renew my agreement for 2001. I told her that if/when she got pregnant, I would immediately reduce my travel schedule and find something else inside Lucent not involving travel. In June of 2001, I took Ina to London and Paris for our anniversary - actually more of a thank-you-for-going-through-hell trip. We needed the bonding time to keep us strong. As we were standing on our balcony at the Hilton Paris Hotel, Ina asked me if I was ready to be a daddy. Once I came back to reality, we began talking of how I could start reducing my travel schedule. I knew this would be extremely difficult because I had worked my way into Project Management for several of Lucent's projects at that time. By this time, Lucent had been through several rounds of layoffs due to its financial troubles, but none of those cuts reached my area. In early August, rumors reached me that Lucent would be greatly condensing the Southeast Region which I was a part of; the goal was to focus on the large market cities and close the smaller offices that couldn't generate revenue. I still thought our office was OK here because our entire office (all six of us) were always engaged in projects, we had the lowest overhead in the entire organization, and we were making Lucent a ton of money vs. our expenses. I had been contemplating quitting anyway so that I could be home full-time for Ina again - I had forgotten how to be a husband and was only concerned with providing financial support. My manager convinced me to wait it out because Lucent was still providing compensation packages for workers who were laid-off. On August 9th, 2001, confirmation of the closing of the Jackson office came to me via email. I cried like a baby. I had so much built up frustration and anger toward the company but I was also finally going to be home again. And I was going to be paid for the equivalent of about 90 more days of work. But I still had no idea that God was working already. I could only fear that I would not find another job that would provide the financial support my family needed.
I landed at the University of Mississippi Medical Center in November 2001 as a Network Analyst. I had to take a considerable paycut with the job, but the level of benefits and the rewards for long-term work are worth it. Instead of being home two days a month, I am now home every weekday by 5:30 at the latest and all weekends, not to mention holidays. I get to sleep in the same bed with my wife every single night - ok except for the last month of her pregnancy - and my stress level has all but disappeared. I was thankful to God for providing the job, but I still did not know what God had in store for me.
Morgan Ina's arrival has been excitedly anticipated by so many people it's overwhelming. In the three-and-a-half days that we were at the hospital, some 70+ visitors came by to say congratulations and see Daddy's little princess. This count does not even include the grandparents who spent virtually all visiting hours with us, and all of the hospital staff who came by to see Morgan and offer their prayers. Friends and people I didn't even know called daily to let us know we are in their prayers and to offer congratulations on Morgan's arrival.
I guess it was Monday, the 28th, that I first started to realize just what God had done to prepare me for dealing with having a child with Down's Syndrome. He provided me a way out of a job that would have kept me away from my family, he provided friends and family with unconditional love and support for all of us, and he provided the best nursing and medical care I could have asked for. The nursing staff at St. Dominic was so helpful in answering the thousands of questions new parents have, offering advice from experience, and most importantly, patience. They even offered the number to the nursery for 24-hour support if we have more questions or problems at home.
My spiritual life has also evolved tremendously over the past couple of years. I was raised in a Baptist church but never really gave God much of a chance to work with me. I walked down the aisle and professed my faith in Him when I was 10 or 11. That was shortly after my next door neighbor committed suicide and I was scared and didn't understand any of it all. I knew I needed God, but I thought my job was done when I was baptized. I went through the motions of going to church, but for years my priorities were elsewhere. When Ina and I got married in June of 1998, we faced the decision of where to start our own church family. Ina grew up Methodist, so we also had to decide which denomination we belonged in. Our plan was to visit several of the area churches, but after visiting Crossgates United Methodist church, I found the church I wanted to be a part of. As a first-time visitor, I didn't feel like one. I felt like I was already part of the church family. So many people introduced themselves and were so friendly. Not in the way I had imagined; welcoming someone to your church because you feel like you have to, but people were genuinely excited that we were at their church looking for a new home. We visited a Sunday school class called Crusaders. At the time, there were nine or ten couples in the class. But it wasn't anything like Sunday school. There is no formal teacher. The couples in the class take turns providing the lesson and leading discussions. This appealed to me the most because I didn't feel like I was being lectured to, nor did I feel inferior about someone knowing more about God and faith than I did. Crusaders is now up to, I think, 18 or 19 couples, all who attend regularly. It's being in that environment and Ina's support in me that has pushed me to opening back up to the Lord and listening to Him and actually *wanting* to go to church on Sundays. I've always heard that the more you think you know about God and your faith, the more you realize you don't know squat. But that's just it, that's what makes you keep wanting more. How can I not be excited about God and the miracles He provides after seeing my wife give birth to a living miracle directly from God's hand?
I know this is long, but I'm not writing this for your reading pleasure. I do this for my own therapy of sorts. I grew up with computers. This is my vehicle to escape from stress, problems, reality. This is my way of unburdening myself of my inner-most thoughts, concerns, fears, dreams, and thank-you-God's.
02/03/02
Morgan Ina is one week old today. She's also displaying little bits of her own unique personality. She's a quiet baby, at least so far. She can get fussy right after feeding, but wouldn't you if you were full of gas and didn't know how to get rid of it? But pop in the magic pacifier and she's as happy as can be. The constant debate is how dependent are we going to let her be on the pacifier? Everyone has their own opinion, but here's mine: if my baby is crying cause she wants her passy and it helps her get to sleep, then by golly she's gonna get that pacifier. I'm sick of hearing all the old wives' tales.... you'll spoil your baby if you hold her too much. That's a crock and my baby will be spoiled regardless. Your baby won't feed if you give her a pacifier too often and you'll have major trouble breaking her of it later. She eats when she's hungry (about every 3 hours), and we'll deal with breaking her of the pacifier when that time comes. And on and on and on. But anyway...
I never thought changing a baby's poopy diaper would be something that I enjoy. I think it's the one-on-one bonding time that I treasure so much. She wakes up during diaper change and does little more than kick her legs around getting her exercise. And afterwards we sit and talk and coo and work on saying "I love Daddy". ;)
Morgan is off the billi-blanket as of yesterday afternoon. The billi-blanket is something babies need for jaundice. It's perfectly normal, and because Ina and Morgan have different blood types, it was all the more likely Morgan would experience this. So for 48 hours, she had to wear basically a vest around her tummy with a pad against her back that literally glowed when the unit was turned on. No need for a nightlight either. We have a follow-up appointment Monday morning to make sure it's all gone. Hopefully so. I can't stand to have them stick her little feet again to draw more blood. The poor child has been through enough already and has so much more to endure. Her first pediatrician's appointment is Valentine's Day.
We expect to get the results from her blood tests from UMC late this week. This is the test that will tell us what type of Down's Morgan has.
02/08/02
CAUTION:
Lots to read today. Proceed at your
own risk of sudden sleepiness.
If
you haven’t already noticed, the counter is broken. I threw it in there from some HTML editor to get an idea if
anyone was checking out the site. I’m
taking the counter off today and will put one back on when I get it fixed up.
So far the site has gotten about 45-50 hits a day.
OK.
If you don’t know anything about Down Syndrome, let me try to explain
in English what it is. Down’s is
a genetic disorder which results in an embryo having three number 21 chromosomes
instead of two. This is commonly
referred to as Trisomy-21. There
are no degrees of, or severity levels
of Down Syndrome. There are
three differing types of Down’s.
Before, or even at, conception, a pair of #21 chromosomes fail to
separate. As the embryo develops,
the extra chromosome replicates in every cell of the body.
This is referred to as nondisjunction,
which is responsible for 95% of all cases of Down Syndrome.
Why this happens remains a mystery, although there is some relevance to
the mother’s age. Mosaicism occurs when nondisjunction of the 21st
chromosome takes place in one of the initial cell divisions after fertilization.
There is a mixture of some cells containing 46 chromosomes and some
containing 47 chromosomes. Those
with 47 contain an extra 21st chromosome.
Mosaicism is responsible for only 1% of all Down’s cases.
Translocation occurs in 3-4%
of all Down’s cases and occurs when part of the 21st chromosome
breaks off during cell division and attaches to another chromosome.
Even though the total number of chromosomes in the cells is still 46, the
extra part of the 21st chromosome attached causes the features of
Down Syndrome. In about one-third
of translocation cases, one parent is a carrier of a translocated chromosome.
Now….
Clear as mud? It’s all a bunch of
medical mumbo-jumbo, but the bottom line is Down’s occurs because of faulty
cell division before or at conception. With
the very minimal exception of one of the parents being a carrier of
translocation, there is no evidence to what causes this to happen.
When
the doctors told us Morgan had Down’s, my mind escaped to some other place.
I really don’t recall the laundry list of features they detected that
indicated Down’s. But as I’ve
read and re-read the list of most common physical traits, I can identify
several. It’s very difficult for me to step out of “daddy
vision” where I see nothing wrong with my child, but it is important for me to
know the signs to keep a realistic perspective.
So in my expert medical opinion, here they are:
· Flat facial profile, a somewhat depressed nasal bridge and a small nose – Morgan does have the somewhat depressed nasal bridge and a smaller, perhaps flatter, nose.
·
Oblique
palpebral fissures, an upward slant to the eyes – I’m not totally convinced. Morgan
looks a great deal like me, and I have somewhat slanted, squinty eyes.
She has my eyes in my opinion. I
don’t see an upward slant.
·
Dysplastic
ear, an abnormal shape of the ear – Well, they’re kinda smallish.
Is that abnormal? I see
“normal” people everyday with huge ears and teeny tiny ears. Again, I’m not convinced of this one either.
·
Hyperflexibility,
an excessive ability to extend the joints – My understanding of babies in general is that
they do tend to be more flexible at this age.
You can’t tie her arms up like a bow, or bend her legs back the wrong
way, but everything bends as it should. I
don’t see it.
·
Epicanthal
folds, small skin folds on the inner corner of the eyes – Perhaps, but teeny sounds like a better
descriptive word.
·
A
single deep crease across the center of the palm – It’s there. Look at
the palm of your hand and study the lines going across.
Notice how none go from one side straight all the way across to the other
side. Mine are curvy and stop
roughly ¾ across. Morgan does have
the single deep crease that extends from one side to the other in a rough
straight line.
·
Muscle
hypotonia, low muscle tone
– No way. Morgan is strong. Today she is 13
days old and she is already trying to hold her head up by herself at times and
puts her arms and feet down in a crouching position and tries to crawl during
her bath while we’re cleaning her backside.
And she can grip a pinky with the best of ‘em.
The
results from her echo test showed good wall structure in her heart.
None of the doctors and nurses was able to hear a heart murmur.
The doctors also say that there is virtually no chance of Morgan
developing heart problems in the future due to Down’s.
Weak
intestines are another concern I’ve read about in Down Syndrome cases.
No trouble there that I can see either.
Morgan is where any infant should be at this stage in her stool
development. If only I could teach
her how to get out a really good burp.
Have
you ever been
sick and tired of being sick and tired? I’m so sick of reading in every Down’s literature about
how loving my child will be and how much more enjoyment I’ll get from her
accomplishments. Wait a sec….
Aren’t children supposed to be
loving?! Aren’t I supposed to be proud of any
of her accomplishments?! I finally
did read something in an email sent to me from a woman with a child with a
genetic disorder. Down’s Syndrome is not what my child is; it just happens to be a part
of her. After all, she still is
a child and will grow and develop like one.
You can tell me about mental retardation in Down’s kids until you’re
blue in the face, but I will not make excuses for my daughter. She has already beaten many obstacles by carrying full-term,
and I refuse to lower my expectations of her.
She will walk, talk, feed herself, go to the bathroom by herself, go to
school… all the things “normal” kids do.
If you don’t believe me, bookmark this page or come get to know her.
You’ll see.
02/18/02
Morgan’s
first pediatrician’s appointment went well on Valentine’s Day.
She’s was 8 lb. 4 oz. clothed, so probably about 7 lb. 14 oz. or so
realistically. She’s also grown
an inch-and-a-half to 20 ¼ “. The doctor is happy with her muscle tone and overall
development to this point. Cradle-cap
has set in and caused a little rash on her face, so still a very typical baby.
Some nifty ointment and dandruff shampoo should knock it out in a couple
of days.
Morgan’s
umbilical cord stump finally came off, too, so now she has graduated to her baby
bathtub. Since she cannot support
her head by herself, it’s an adventure but still better than the sponge bath
on the bathroom counter.
The
video capture card is finally installed. Bookmark
kevcrowe.inetcam.com.
This is where the webcasts can be viewed.
We’ll try to post on here when we’ll have Morgan on ahead of time,
otherwise just check in every now and then.
I’ll also be able to post some video clips from the hospital and
coming-home tapes now.
My
brother and his wife came to see Morgan this weekend.
They are expecting their first child (also a girl) June 2nd. I found it pretty amusing to watch Shane handle her and ask a
billion questions. And when asked
if he’s ready? He says yes.
I said that too. You may be ready, but I promise you are not prepared.
There are several more rolls of film from the hospital and the week we came home that I’m waiting to get my hands on. I also have some more recent video to grab some still-shots of Morgan from and post here soon. Most of the pictures on here today will be replaced with newer and better resolution pictures soon.
I recently subscribed this site to two Internet "rings". I have received the code for placing the banners on the site and should have that done soon. I never thought I'd join a web-ring because I never liked those annoying banner ads stuck everywhere; however, this is not for commercial profit or some geeky club. The sites that belong to these web-rings are for support, understanding, and education for people with Down's and their families.
02/19/02
I've received some emails concerning the webcam link. If you go to kevcrowe.inetcam.com and get an error message that the page could not be found or something like that, this is just telling you that I am not currently running the See Me Now software. If I have the software running but not broadcasting, you would see a page with an image of a camera with a slash through it. If you want to know if I'm around and want to see Morgan, find me with one of the instant messenger clients. I use Trillian most of the time which logs me into MSN, Yahoo, AOL, and ICQ all at the same time.
MSN = kcrowe2k@hotmail.com
ICQ = 151181012 (wow... sure wish I still had my 3-digit and 4-digit accounts)
AOL = kcrowe2k (Trillian often has problems logging in here)
Yahoo = kevin_crowe