Baby Daddy Murad

Mikaela meets Dr. Judith Hall

2009-09-28T20:31:00.000-07:00

Ok, this here is probably the biggest, and most important point of our lives since Mikaela was born. This is the moment we got to sit down and meet Dr. Judith Hall, a geneticist who specializes in arthrogryposis. She is by far the leading expert in the field and we had the incredible opportunity to meet her at the 4th annual AMC convention in Philadelphia. She was able to answer so many questions for us about our daughter, and a lot of questions I'm sure you may have had about AMC. Not only does she talk about Mikaela's condition, she informed us about how most likely she will grow up, and about different types of arthrogryposis in general. Because of Dr. Hall, we found that Mikaela has a specific type of arthrogryposis called "Amyoplasia" in upper limbs only. If you ever wanted to know general answers about arthrogryposis, and find out more about what Mikaela has, this is the video for you to watch. It's approximately 33 minutes:

Mikaela meets Dr. Hall from Murad Ainuddin on Vimeo.

A couple things about Dr. Judith Hall:
Dr. Judith G. Hall is a Clinical Geneticist and Pediatrician. She trained at Wellesley College, the University of Washington School of Medicine and Johns Hopkins Hospital. She is presently Emeritus Professor of Pediatrics and Medical Genetics at the University of British Columbia based at Children’s & Women’s Health Centre of British Columbia in Vancouver, B.C., Canada. Her areas of research interest are human congenital anomalies and non-traditional mechanisms of genetic disease.
You can read more about her here.

Dr. Judith Hall is one of the co-authors of the book "Arthrogryposis: A Text Atlas". You can read a free soft version of the book by clicking here. I strongly urge anyone involved with someone with AMC to read this book... it is my bible.

Melanie and I can't express how grateful we are to have met her, and especially for her to give her valuable time to see us and answer our questions. Not only did she see us, but she made sure she met with any parents and children during the convention, volunteering her time to help us understand what our children are going through.

What?! Another one?!

2009-09-28T20:17:00.000-07:00

Ok, I know it's been a while. I'm in the works with updating some entries regarding our big trip to Philly in June for the 4th annual AMC convention. But before I did that, I thought it may be fitting to make a little announcement, we're having another baby! Another baby girl is on the way, and her name is going to be Naomi Alana Ainuddin. She's due Dec. 16th, which will make her less than a year younger than Mikaela!
Here's a nice picture of me and Melanie at Yury and Deborah's wedding.

Here's a nice picture of Mikaela holding pictures of her soon to be little sister:

So obviously, the number 1 response to our news has been "Wow, you guys are busy!" followed by a chuckle. Needless to say, there is a method to the madness as we feel that Naomi would be the perfect motivator for Mikaela to get up and at'em. We wanted Mikaela to have a best friend so to speak, to help her grow up and be there for her in school and in every day matters.

Sadly, yet another response to our news is the question of "Is Naomi going to be just like Mikaela too?" Not many people have asked us, but we are aware that there is a sense of wonder. So just to get it out in the open, Naomi is perfectly healthy and shows absolutely no signs of having any birth defects or contractures. What Mikaela has been born with is in fact a very isolated incident, as you will hear from Dr. Judith Hall if you are interested in watching the video.

Beyond that, Melanie, myself and Mikaela are very blessed to have yet another little girl come into our family. I'll post more on Naomi's developments as they come about.

Lots of catch up to do

2009-06-17T02:11:00.001-07:00

It's been months since I have updated. I'm still trying to learn how to balance family, work and time for other things. Needless to say, I'm going to take some time to put some new posts and updates, including lots of video and pictures. Melanie, Mikaela and I are heading to Philly this weekend for my mom's wedding... WOOHOO! After which, Melanie and Mik are going to stay on the east coast, and I will fly back to LA to get back to work. During that time I hope to get everything up to date. After which I will fly right back to Philly in July for the 4th annual AMC Convention, which will be our very first. We're really looking forward to finally meeting a lot of people whom we've read and heard their stories and have provided much support to us. So I'll have another big post on that.

In the mean time, I leave you with this:

That big scary word; Arthrogryposis.

2009-03-07T02:36:00.000-08:00

Arthrogryposis, is also known as Arthrogryposis Muliplex Congenita or AMC.

What it basically is, is a rare disorder characterized by stiff joints and muscle weakness. Some causes include fetal crowding, muscle defects, maternal sickness, and neurological defects. What is known is that it is not genetic of hereditary. The rareness of it works out to be around 1 in every 3000 births. The term Arthrogryposis, as explained to me by one of our doctors, is a very loose term. Kind of like saying you've got a car, but not specifying what kind of car it is (Toyota, Ford, Honda). The word is broken up in Latin, literally means "Curved Joint Disease"

Arthro - Joints
Gryp - Curved
Osis - Diseased or Abnormal Condition

AMC is broken up like so:

Arthrogryposis - Curved Joint Disease
Multiplex - Multiple Parts
Congenita - Evident at Birth

Here is a list of resources you can check out to find out more about Arthrogryposis:

Websites:
en.wikipedia.org/wiki/Arthrogryposis
www.amcsupport.org
www.avenuesforamc.com

Books:
Arthrogryposis: A Text Atlas
Here is a website where you can download this book for free as a PDF:
Arthrogryposis: A Text Atlas (PDF)

Picture of the Month

2009-03-05T03:41:00.000-08:00

Get ready for some gratuitous abuse of power. Me forcing my will upon my daughter:

Hey, some parents force their religious belief upon their kids before they can form their own opinion. Other parents force their kids to conform to their customs. I'm just simply letting her know what the greatest hockey team is. When she gets older and starts to think for herself, then she can decide what to believe. She can do anything she wants...

...just as long as she's not a Devils or Rangers fan.

Supplemental pics:

Mikaela pouts!

2009-03-05T03:30:00.000-08:00

Alright seriously, my daughter is awesome and she rocks.

But before I continue, let me just say that I am not one of those dad's that go on and on about their kids. Personally, I think kids have to do exceptional things to warrant the ability to brag about them, especially to other men. What I'm about to say isn't bragging, it's just sharing with others something I finally got on camera.

So for whatever reason, it seems Mikaela is a very expressive girl, especially when it comes to her being annoyed or unhappy. I've gotten a lot of comments about her "hard" look... that look of "Dude, I'm going to pop you one right in the face if you don't stop messin' with me!" as illustrated here.
Anyway, another one of these expressions is this pout she does when she's either sad, or upset. I can't put into words of how cute this is.

So behold:

Mikaela pouts! from Murad Ainuddin on Vimeo.

Also note, my selfish need to continue to annoy her with my face rubs just to see her cute pout!

Oh yeah.

The Delivery of Mikaela.

2009-02-27T00:34:00.000-08:00

Wow. It seems quite feeble to try and encapsulate everything that has happened since I last wrote a journal entry. I'm not sure where to begin, considering what has happened. Needless to say, I experienced the greatest feeling I have ever felt, and the challenge ahead isn't scary anymore. My little girl is here and she's here to stay, which I am so thankful for, and I'm so thankful my wife is here with me as well.

Usually, I get into every detail that happened, from the emotional side, to the factual side. For reasons I have to myself, I'm not going to get into emotions, and I'm going to keep this simple and to the point.

Mikaela Frances Jane Ainuddin was born on Saturday, December 27th, 2008 at 2:46pm. She weighed 6 lbs. and 2 oz. and was 19 inches tall. She was born at Queen of the Valley Hospital which is part of the Citrus Valley Medical Group, and her doctor was Dr. Victor Morales, of Magan Medical Group. During pregnancy, she was considered a high risk baby, considering certain symptoms and suggested diagnosis. These were based on the 4-D ultrasound we had done when Melanie was 29 weeks pregnant. Her arms seemed rather stiff and she didn't bend them at all, and her hands looked like they were severely tucked under her forearms. The journal entry below is referencing that 4-D ultrasound, however, I edited to not show her hands and arms, since we didn't want everyone to see it yet without knowing what exactly was wrong. Based on this ultrasound, we were referred to Dr. Greggory Devore, who is an expert at fetal ultrasounds. One diagnosis suggested Trisomy 18, another being Arthrogryposis, and another being Down Syndrome. Despite these many diagnosis, by many doctors, Melanie and I remained quite confident and sure that we had ourselves a healthy and beautiful baby girl that may need a little extra help growing up. Meanwhile, to make things even less smooth, Melanie developed a DVT (Deep Vein Thrombosis, or blood clot) while she was on bed rest. Basically, the lack of activity and movement reduced her blood circulation and she developed the DVT. As a result, she was hospitalized and given blood thinners to control the clot. The DVT made matters more difficult especially if she were to have a C-Section, which is a major surgery. It was clear that a vaginal birth was the safest route for Melanie since it would avoid the surgery and reduce the risk of major blood loss and a possible blood transfusion.

Things seemed to go according to plans. Melanie was induced and she went into labor. It became apparent that every time Melanie had a contraction, Mikaela's heart rate dropped greatly. Dr. Morales was troubled by it and assumed something may be wrong. Ultimately, a decision had to be made regarding how to conclude the delivery. Continuing with a vaginal delivery seemed to put Mikaela through more danger and it seemed that she may not make it. The alternate choice was to have an emergency C-Section, which would be the safest route for Mikaela, but be very dangerous for Melanie since she had the blood clot. In the end, the decision was made by Melanie to go ahead with the C-Section despite our doctor's recommendations. We were instructed that because of the situation, Melanie would have to be transported to the Intensive Care Unit after the C-Section to be monitored for her blood clot. Also, because of the medications she has been on, she would have to be under general anesthesia, which would put her completely to sleep. We knew Melanie would not be able to see Mikaela right away because of this.

At 2:00pm, Melanie was taken to the operating room. She was accompanied by Dr. Morales, who would be doing the surgery. Also with her was Dr. Wanda Brady, of Magan Medical Group who was there for support, Dr. Fermin, a neonatal specialist from the Neonatal Intensive Care Unit, the Charge Nurse from NICU, the anesthesiologist, and Dr. Yang, another Neonatal specialist. I had to wait out in the hallway, but I was accompanied by our Doula, Lorie David, whom we hired for the labor. Despite many setbacks during the procedure, including the power going out twice, the surgery was a success, and Mikaela was born at 2:46pm. Melanie was immediately taken to a recovery room after.

When I saw Mikaela for the first time, it was pretty much exactly what everyone has said it would be when you meet your first child. One thing for sure that I realize looking back at what I experienced, is that any form of doubt and uncertainty of my ability to be a father went right out the window. I remember seeing Mikaela and how vulnerable she was, how all these strangers were touching her and holding her and poking her. My first instinct was to reach out and punch every single person in the room and snatch my daughter to protect her from them. She was crying and she didn't know where Mommy was. The nurses notified me that Melanie's decision to go ahead with a C-Section was the right decision. It turned out that Mikaela's umbilical cord was wrapped around her neck three times. Which explained the sudden drop in heart rate every time Melanie pushed. It's sometimes common for an umbilical cord to be tangled or wrapped around a certain part of the body, but three times seemed unbelievable. It made plenty of sense when I remembered that the doctors made a note that Melanie had an above average amount of amniotic fluid, which allowed Mikaela to move freely and "bounce" all over, increasing the chance of cord entanglement. Quickly enough, I noticed her arms and hands and I snapped back to reality and had to let the nurses and doctors do their job. It was clear as day that Mikaela was going to be a little different than the normal child. All that remained was my dedication in protecting this little baby and doing everything in my power to give her the help she needed. It took a few minutes, but eventually I came to terms with letting these nurses look after her, and I felt that she was safe, and my focus then shifted to Melanie.

I was taken to where Melanie was, and surprisingly, she just happened to wake up as I approached her. I immediately told her she delivered a beautiful baby girl, and to not worry that she is being taken care of. Melanie asked me questions about her, particularly about her hands, and all I could say to her was "She's going to be fine." I pulled out my cell phone and showed her some of the pictures and video I took, and Melanie seemed much more at ease. As much as I wanted to stay there, I couldn't ignore Melanie's wishes, which was to leave her be and stay with Mikaela. I gave her a kiss and I left her to get her mom so that she could be with her. I went back up to the NICU and stayed with Mikaela. Dr. Fermin approached me and said "Well, she isn't an 18, so that's good news." 18 being short term for Trisomy 18. He couldn't say anything else about her since he wasn't sure, but he told me that they will find out through the help of other doctors. The fact of the matter was, this was going to be a long process, one that no parent really prepares themselves for. All I could hope for was the doctors and nurses would do the best job they could to help my little girl. This NICU would be our new home for the next 20 days.

A day later, Melanie was released from the Intensive Care Unit and brought back to the Maternity Ward where she was given a postpartum room. A day after that, Melanie finally got the strength to get up and get in a wheelchair. It's been two days for her since she went to sleep with a big belly, and woke up an hour later with no belly at all. This was a significant moment for us since it would be the first time Melanie and Mikaela would meet. The moment came as Melanie wheeled herself into the NICU, and I remember her asking "Which baby is mine?". She was guided by one incubator after another, and I remember seeing her head turning side to side as she passed them, checking to see which one was hers. She was wheeled up, the last incubator, and finally Mikaela got to meet her Mommy. It's quite a trip for me to think back at it. I mean there was my daughter, in a box, with a jaundice light over her, and tubes going in and out of her. And then there was my wife wheeling up to her, with tubes going in and out of her. To see Melanie's hand reach inside the incubator, and touch the hand of Mikaela was something I will never forget.

The next day, was New Years Eve. I remember this day because two great things happened. One, Melanie was cleared to go home, and Two, we got some great news from a doctor. I visited Mikaela that day, and her nurse told me that Dr. Hanes, an orthopedic specialist came to visit her. He took x-rays and studied her arms and based on his assessment, Mikaela's prognosis was good. All she would need was rigorous Physical and Occupational Therapy. He said her bones looked great, but she needed to stretch out her tendons which had tightened severely in utero. While there were still plenty of questions to be asked, the news that she was going to be okay was the best news I've heard in my life. I remember Melanie breaking down in tears of relief when I told her the news. That day, I took Melanie home to get cleaned up and dressed, so we could go back to the hospital in time to say Happy New Year to Mikaela.

On Thursday, January 15th, Mikaela was approved to be discharged from the hospital. The past 20 days were filled with so much joy, and so much stress and fear. We still didn't know exactly what had caused Mikaela's condition. Specialist, after specialist came and went, did their tests to try and find something. Geneticists came and went, Neurologists came and went and still nothing. We still weren't exactly sure what Mikaela's condition was. Everything from Hyper-tonal muscles, Arthrogryposis, and Holt Oram were still possibilities. Once we were home, the next several weeks consisted of doctor follow ups, and 2nd and 3rd opinions.
We finally got our answer on Tuesday, February 24th. That day, we went to Children's Hospital of Los Angeles and met with Dr. Lightdale, who specializes only with children's orthopedics. Dr. Lightdale confirmed to us that what Mikaela has is indeed Arthrogryposis, which is a rare congenital disorder, usually involving contractures, muscle weakness, and fibrosis in the joints. The good news is that Arthrogryposis (or AMC, Arthrogryposis Multiplex Congenita) will never get worse over time. The way to treat it is intense physical and occupational therapy to help loosen and stretch the joints and muscles, with surgery as a possible option down the road. Despite what she has, the most important thing for us as parents is to understand that her life is limitless. Mikaela will be able to do anything and everything that any regular person can, but just do it a little differently.

In the end, it's been quite a roller coaster to get here, and through it all, Melanie and I have been blessed with this amazing little baby. Despite what we have been through we are so thankful for everyone involved, even those doctors. I've heard several times from family and friends that we should seek legal action against some of those doctors for putting my wife through a lot of things she didn't have to go through. My quick response is "If it bothers you so much, you are more than welcome to sue them." I guess our point is that we hold no anger, or regret for anything that has happened. We're moving forward like any other parent would when put in any similar situation. We've done a lot of research on the possible situations we could have been faced with based on some of these doctors opinions. Let's just say I'm glad doctors can be wrong too. Mikaela is now receiving PT and OT from San Gabriel Valley Regional Center, by someone who comes to our apartment. She also has several splints that have been made for her arms to help with stretching. Aside from those two things, we can't wait to watch her grow up into a beautiful, young lady.

Any day now

2008-12-14T15:37:00.000-08:00

It's December 14th, and Melanie and I are pretty much waiting in anticipation. A lot of things have been taken care of in terms of prep. For example, we have 2 strollers now, one really good one, and a backup stroller. The idea came because we have 2 cars and we wanted to have a car seat for each. Also I picked up a Pack 'n Play system that can collapse and be taken with us on trips. I fitted our bed with a waterproof mattress cover in the event Melanie's water breaks, and I have another one fitted on the sofa bed mattress as well, in case the water breaks there. Melanie is currently on bed rest right now, so that's the reason the sofa bed has been used a lot. It's getting pretty hard for her to do normal things now and to make matters worse, she's in a lot of pain just doing normal motions. She barely sleeps, maybe an hour at a time. I haven't seen her get more sleep than that, because she's either woken up to go to the bathroom, the baby kicks awake, of her back pain gets the best of her. Because of her being on bed rest, I've arranged through my company to be able to work from home 2 days out of the week. These days coincide with the times she has to go to the doctors for her fetal monitoring. My company has been pretty understanding and really supportive through all this, and the timing has been perfect, since there really isn't too much work to do right now. The only sad thing about this is Millard and Janice having to run the store during Christmas season without Melanie's help. Needless to say, they have been managing really well, and I'm not surprised; after all, they have been doing this for 30 plus years. Our hope is to be able to send Millard and Janice on a nice vacation after the season ends, maybe to New Jersey so they can meet their new grandson.

Time is ticking, yet not going fast enough. Soon we will be parents, and we will begin the path of trying to be even better parents than what ours were... which is a pretty ambitious goal.

Unpacking the Pack 'n Play from Murad Ainuddin on Vimeo.

4d ultrasounds are not really 4d! Go figure!

2008-10-31T23:29:00.000-07:00

So throughout our time going in and out of the doctor's office, we picked up a brochure to get one of those cool 4d ultrasounds so that you can actually see what your baby looks like. This is a really exciting part, almost up their with going to Disneyland for the first time in your life... after all, you'll be getting your first peek at the baby. Much like a Coming Attractions trailer in the theatres. It really is exciting. The place we booked our ultrasound at was a place called 'Treasured Moments" in Glendale, Ca. A couple things I must note about the 4d ultrasound.... it is in fact NOT actually 4-d.
The nerd in me consistantly entertained the idea that maybe, just maybe, this modest facility in Glendale, Ca. will actually break through the space/time continuum, sending all sorts of particles and matter through dangerous worm holes and anti matter, in order to transmit images of our baby back to our world of 3d. Could this tiny facility have actually solved the riddle of the 4th dimension that the likes of Albert Einstein, Carl Sagan, Stephen Hawkings and Neil deGrasse Tyson could not solve? Of course it's a catchy way of luring customers, after all, normal people wouldn't actually break it down to the Treasured Moments people that they are wrong. But still, the 4th dimension is a big deal! And I feel kind of stiffed for the false advertising! Just check out what I'm saying:

Ok, now that I've got the 4-d thing out of my system. On with the real reason we went there and how it went.

I can remember tension building up for myself and Melanie. Throughout the night before, we played a game of what our baby would look like, whether she takes after me or Melanie. So when we got to the facility, we were just so excited. Eventually you get brought into a room where the ultrasound tech performs the procedure. At first, she starts the music, which happens to be Enya, which I guess they were trying to go for the new age/emotional/ soothing music... personally, all I could think about is a bunch of hippies and hobbits playing tunes for my child, but its not about me, it's about the baby. Anyway, there she is, our baby, but in regular black and white sonogram mode. She takes a few measurements, and checks the heart beat. And then the real show begins. The technician switches to the "4d" mode and Melanie and I can finally see Mikaela. And it was... amazing. Beyond the fact you can see her nose, and eyes, and mouth, you can see her whole face solidly. The first feeling that I could remember rushing through me was "My God, did we really make that?" She was so perfect and little and everything was working. All I could keep thinking was that I couldn't believe I helped make her. And how she was inside my wife's tummy. I wanted her out, and I wanted to hold her so bad. It's just an incredible feeling to see her turn and move right then and there. Melanie and I both cried. One thing is for certain though, I definately think she looks like Melanie, with my lips and nose.

4D Ultrasound of Mikaela Pt. 2 from Murad Ainuddin on Vimeo.

The crib is ready!

2008-10-14T12:48:00.000-07:00

The room we're turning into the nursery finally made some dramatic progress. There's still some work to do in there, particularly getting rid of my oversized office furniture. But Melanie and I put together Mikaela's crib and it is absolutely beautiful.

We're still waiting on a dresser and a changing table, but things are definately coming together. Our "nesting" stage has definately started.

Crib Assembly from Murad Ainuddin on Vimeo.

Picture of the month

2008-10-13T00:16:00.000-07:00

Alright, so Melanie and I decided to go to Disneyland cause we had 2 tickets from when we were supposed to go with Patrick and Summer when they visited us. You can check parts of their visit here and here.

Anyway, so we're at Disneyland and Melanie snaps a photo of me in the California Adventure section of the park. This picture pretty much sums up my attitude about becoming a father. I know I'm going to love every minute of it... but I'm not sure how much Mikaela will love it. Especially when I'm still looking like this on her first date and her sweet sixteen.

Daddy's Ready:

Locked and Loaded!

My First Entry

2008-10-12T21:15:00.000-07:00

First off, I refuse to call this a blog. I don't like the word "blog". "Blog" sounds like something someone does in the bathroom. I don't like the word "diary" either. When making the website for Mikaela, I knew I wanted to keep a catalogue of events that Melanie and I have done throughout our pregnancy. The goal was so that Mom in Philly can keep up with what's going on with our life, as well as other family and friends. So naturally, the idea of a diary was appropriate. I told Melanie and she agreed it was a great idea. So I made a "Mom's Diary" for Melanie. Then I was going to create "Dad's Diary" when it occured to me; Dad's DO NOT keep diaries. They keep journals. So here it is, my journal. But not just any journal... it's my journal about the experience of pregnancy and what it's doing to our life. I will not document what I did this past weekend, how the Flyers did, my views on politics. The only entries here will be those of the evolving, involving, and revolving world of our future daughter Mikaela.

I'm Murad Ainuddin and I approved this message.