Baby Q and A

This is a follow up to "A Very Special Q and A" post. This mother contacted me in her seventh month of pregnancy after discovering her unborn child had Achondroplasia, a type of dwarfism. After a successful birth and tiring stay in the hospital, mom and baby are at home. She allowed me to interview her for this blog.

Gina, congratulations on your beautiful new baby! Many people followed your story, as you know. How are you and your daughter doing?

Alisha is doing good. She has gained a little weight but she is still so small, preemie clothes barely fit her!

Is this something that concerns the doctors?

Oh, no. She's feeding well and they're happy with her progress. They gave me a ton of information, including a growth chart. It's only for females with Achondroplasia. She's just a little dot on there now, but they'll measure her as she gets older and graph it on the chart. As long as she stays in those lines, she's growing okay, I guess.

The delivery went well? No problems?

This is my first baby, so I was terrified. I had a C-section and I was pretty sore afterwards. The delivery itself was easy. It seemed like it was over so fast, probably because I was so nervous. There was one moment when I couldn't hear her cry. The nurses were cleaning her up and I couldn't see her...then I couldn't hear her. I panicked and started yelling, "What's wrong? Why isn't she crying?" Then I heard her again, they told me everything was fine and not to worry. (They were sucking the stuff out of her nose). Then they brought her to me and asked me what her name was. "Alisha Ann" I said. Saint Ann was Our Lady's mother. My middle name is Maria after Mary so I thought it would be nice.

That is a beautiful name, it sounds lovely together. How did Alisha Ann fare in the NICU? A lot of people were scared when they heard she was in the intensive care.

She did good, she was in there almost a week. The first thing they did were xrays to confirm her diagnosis and look for any problems with her skull. There were none, thank God. But she is a dwarf, so they keep her in the NICU to watch her. She had a tube to help her breathe for a while and a feeding tube for a little bit. But every time I went to see her, she was fine. The doctor was so sweet, he kept telling me she was progressing the way they wanted her to. But I was still scared then; I cried a lot for the first, um, few days, I ---um---sorry--

Don't be sorry, Gina, it's okay. I cried too, it is a scary experience.

I just didn't want to lose her. She was so tiny. I prayed the Rosary in the chapel everyday. I prayed to St. Ann to watch over her. She was so small...well, she still is, but I'm used to it now. (Smiles). I remember in the NICU, there was a cd player they allow the parents to use to play lullabies. I, um, there was this sticker on it that said, "In loving memory of Daniel Manuel Ortiz". It shocked me for a minute. There were parents losing their babies there.

(After a short break we resumed our conversation.)

How was your first few days at home?

Oh, boy. Getting her home was a lot of work. I had to have all of this special stuff. She doesn't fit into a car seat, so they rented a car bed to me. It is only about this big, (holds hands out), it fits into the front of the grocery cart where children usually sit. Ha Ha. She has a CPAP, it is a machine that helps her to stay breathing at night.

My son had one of those too. I hear a lot of the babies with Achondroplasia do.

Yes, well it gives me peace of mind. You know? I don't have to worry about SIDS. I know she is breathing and safe. They gave us an alarm which will go off if she did stop breathing. I still keep her crib in my room though.

How are the nights going?

She barely makes a peep. I wake her to feed her. She doesn't roll over or anything. She's very much like a rag doll...they called it something...Oh "floppy". They said she would be "floppy for a while".

Yes, that is very common for babies with Achondroplasia. I took mine to Physical Therapy at 3 months because he still had hypotonia. (weak muscles).

That was the other word, hypotonia. They said she would be delayed in all of her physical milestones: sitting, walking, etc. They gave me a chart for that too. (Laughs). I have a pamphlet or chart for everything! But I read as much as I can about Achondroplasia. It is exactly like you said, everything is a little different.

How do you feel about that?

I'm getting used to it. Like I said, I have never had a baby before, so I don't have anything to compare it to. But, so far, I am used to her size, but we still think it is so cute the way she fits into her clothes. I feel like buying doll clothes. I roll the sleeves up and the baby gowns are all very long on her. But some of the preemie outfits fit her. My family just keeps shopping and bringing new things for her to try on. This girl is going to have clothes for a long time!

Nothing wrong with that! Girls should have a lot of clothes. Believe me, you will use them for a long time.

Is that how your baby was? Same clothes for a long time?

Yes, he was a 2T the summer before first grade. In a few months, you will probably start to tailor her clothes for winter.

I am very grateful that I know how to sew. My mother, my grandmother, we all sew. Do you do Jax clothes?

Uh, no. I am so clumsy with the sewing machine. I send his out to be tailored. Though, some brands I found fit him okay without having them tailored. You would think they wouldn't if his upper arms and legs are shorter, but they did.

I hope it will be the same for her.

How are others in your life responding to her?

My family loves her, of course. They say there is nothing wrong with her, she is perfect! I think so too. God made her this way and she is so beautiful. I can't argue with God's plans. I did as you suggested and wrote a letter to all of the members of our family, aunts, uncles, cousins ... you know. I explained what Achondroplasia was and how she will be just like any other kid with a few exceptions. I explained what words were okay and what is offensive and --gosh, I just tried to answer any question I thought they'd have. Everyone treats her like any baby in the family.

As it should be. She is like any other baby right?

Exactly. I am glad they don't treat her different. Strangers are much more curious. They tell me how tiny she is. But that would be the same for a preemie too, I guess.

So how are you doing?

I'm okay, I am so happy that she is with me. I still cry, I don't know what things will be like for her in the future. My family is very supportive, they remind me what a miracle she is. I thank God that I have her. Physically, I am tired. But I think I was more tired before she was born just because I worried so much. She is a happy baby, that makes things much easier. She's also very cuddly, I call her my little baby bird, because she lays in the crook of my arm and sleeps.

Newborns sleep a lot, don't they?

Yes, yes, they do. It is nice because I can sleep then. I don't want any one to help me too much, I like doing all of the things myself: changing her, dressing her, bathing her. I just love being with her. It is funny because I know more about how to take care of this baby than my mom does. If I have a question, I either have to figure it out myself or call the pediatrician...haha. I don't think my mom likes that so much. She will give advice and I have to tell her, "No, it doesn't work that way with her."



Well Gina, thank you so much for sharing with us. Your new sweetheart has gotten a lot of attention from my readers! I passed on the well wishes and congratulations and prayers. I'd like to interview you again in the future if you don't mind?

Not at all. Please tell everyone that we said thank you!

I will. You have given so many people a wonderful insight into this experience. Thanks again!

Common Ground: Milestones

"Common Ground: Milestones: Around New Year's Day of every year, my wife and I reflect on the highlights from the previous 12 months. For 2012, while she and I had ...".. great article by Gary Arnold.

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MAGICAL SPIDERS MAKE MAGICAL WEBS

Fortuitous Correlation...in pink or blue.

Being pregnant was something I'd waited a long time for. From the time I was a little girl, playing with baby dolls, through my teens, and into my late twenties, I dreamed of someday being a mother. When you are young, you are busy having fun, then studying, then working and studying, then working more, until that day you realize you are not getting any younger. Many of us feel a little panic as that biological clock begins to feel more like a Doomsday's Clock. We are set in our careers, our relationships, our life. By this time, we are comfortable with a 15 year mortgage, a retirement account, a bit of savings built up---but have never thought of saving for college for someone else. Some of us may have just finished paying off our own school loans. Then you say those words... ...out loud... "I want a baby." Soon that ticking turns to a gentle melody as you float through life, preparing to become a parent. You start to look at things differently. Not the logical, orderly, and sensible way you used to; no, now you have "baby fever" and everything looks like a fluffy pastel daydream. There is a new type of thinking which I like to call "first-time-mom-pseudo-reasoning". Everything you do is justified because you are on a mission to be the perfect parent. (This will last until reality sets in sometime after the first month.) Even before you begin to show, you are rubbing your belly tenderly. Maternity is filled with the day by day curiosity of what is going on in there. How big is it? Is it a boy or a girl? What does it look like at this stage? When will it start to move? Then, from the moments you realize it is about he size of a grain of rice, it has become real and tangible. Something bigger than a speck is living inside of you. Then comes the first sonogram. You try very hard to distinguish a face in that black and white fuzzy mess on the screen. Your belly grows until you can rest your hands on top of it--or slide them over the hump in loving embrace. The movements inside are something you wish you could share with everyone, but no one really feels them, except for you. For months, it seems at times like it is just the two of you in the world. The third trimester feels like forever. By now, you know who your baby is, you most likely know the sex and have named him or her. Life is about to change and you can't wait. You can't wait to meet your baby. The nursery is ready, clothes, toys... everything is set. For most mothers, their life will continue down that road.

But not for you.

Medical professionals have just informed you that your lil' baby will not be like the others. Your baby will go on to live a long and happy life as a Little Person. NOT! The first words you are likely to hear are, "There is something wrong with the baby". Immediately, the blood drains from your face as they explain that they think your child isn't growing properly, or that your child might have a skeletal dysplasia or any number of things that you hear in muffled jibberish echoing through the room, which has now begun to spin on a Dutch Angle. Times slows down as if you were in a car wreck. The smile slides slowly off of your face, your shoulders slump, you try to swim through the fog to hear what they are saying. In reality, you want it to freeze there. Just stop. A few seconds ago, your bundle of joy was going to be born with bright eyes, was going to toddle around the house, go to school, make friends, and lead the life you had planned. The same one everyone else's child will live. Why my baby? Why my sweetheart? He never did anything to anyone? She deserves a good life. How dare they tell you your child has this fearsome disease or condition or whatever it is! It just isn't possible. Your child was going to be popular, and go to birthday parties, and college, and get married....yes? Yes. What they do not tell you, is: Yes your baby can have all of those things you planned. Those things will just look a little different. Life will be different. Your child will be different. No one tells you at the time that different doesn't mean bad. It doesn't mean ugly, or sorrowful. It doesn't mean the future is doomed. It doesn't even mean the future you planned is over. It has just been given a new name, a new look, and a bunch of new paths. Ones the others will not -- cannot go down. Less than a couple of months ago, a mom contacted me because her unborn baby was diagnosed with dwarfism. No one had told her what all of those strange terms really meant. With nothing but the ugly postmortem pictures in the medical books to go on, she turned to the internet. Many parents stop there. "Let this one go and start over." They might think to themselves. And some do. This mom went further. She wanted information, not on how to save this baby from a horrible fate, or how to heal it...but deep down, she was looking for a reason to fight for it. She wanted to know what the truth was and what it was going to take to successfully keep and raise her child. In the face of other's doubts, she searched for that knowledge to arm herself against it. When I spoke with her father on the phone, once the baby was born, he was beaming with joy and pride. I could hear it in his voice, as I clearly as any new grandfather. I am excited to see what the next few months holds for them. How they will all change. I had seen her grow from the confused girl in our first correspondence, to a strong and capable woman during our last. She was ready to be a mom. She had told me that this experience was what truly prepared her for motherhood. It forced her to confront the reality of caring for and protecting her baby. She is a special mom, they are a special family. I am convinced this child will have everything she needs to grow into a healthy adult. If you have not read Gina's story, please follow this link. http://dwarfaware.wordpress.com/2013/01/20/a-very-special-q-and-a/ There will be more to come in the future, as I plan on keeping in touch with them.

A Very Special Q and A

The following correspondence was condensed from it's original forms. After talking with this mom, I introduced her to the people who will guide her through this. I can honestly say she seems considerably less stressed and ready to handle what comes her way. She allowed me to reprint portions of our correspondence.

Dear Jenovesia, I am 7 months pregnant. The doctor found something during the last ultrasound and told me my baby has dwarfism. I'm not sure what to do. A friend searched on the internet and found your blog. It is a lot of work to care for a child with needs .... my family suggested not keeping the baby, but I'm not sure I could give her up....is there a cure?... it just isn't what I expected, I mean I'm afraid kids will make fun of her ... Why did this have to happen to her? She did nothing wrong! ... I know what I'd tell someone else, but everything is different now that it's happened to me ... I keep asking myself, what will she look like? Will she ever have a boyfriend? ... I'm really scared and confused. --Gina Dear Gina, It took a lot of courage to write to me, I am glad that you did. It is a shock to hear those words. They were the last words I ever expected to hear. But once your head stops reeling, you will realize there is a beautiful child waiting to be born. This is your child, the one you have been waiting for. She was meant to be exactly who she is. I promise you, you will fall in love with her just as you would have if she were any different than she is. After all, you already know her; she's been with you for these months. We all have ideas in our head about what our baby will look like. We all have ideas of what our child will grow up to be. The real truth is, dwarfism or not, none of those ideas are ever accurate. Yes, you are justified in your concern -- any mom would be. You should also allow yourself to grieve from time to time... Is it easy? Not always. Sometimes it seems as if everything is a puzzle. Then, I look at him and I see how he naturally adapts and works to find his own way. He teaches me and inspires me. Caring for him has pushed me to do things I would not have thought myself capable of. But everyday I find the work is worth it. It has been an amazing life so far, one I would not change for anything. I am also very pleased to say that he is happy with who he is. I've always told him that he has been given a gift, what he is to do with it is for him to figure out. He allows himself to grieve too sometimes. He knows that he is not as fast as the other kids, can't go in the bounce houses at parties, or play some sports as well. Sometimes he feels left in the dust. However, on most days, the fact that he is a dwarf alludes him. There is too much life to live, stuff to do, and fun to have. He has girls chasing him already, (which he loves). He will, like any young man, have heartbreak and break hearts too. It is inevitable. He will also find love, I am certain of it. There will always be bullies and prejudice, very few of us escape that. However, I have found that other children have been especially kind to him because of who he is and how he feels about himself. There are many scared parents who come to LPA, after awhile, they have blended in so well that you'd never know they weren't expecting this. Please read "Welcome to Holland", which is posted on this blog, visit lpaonline.org and see the beautiful children. If you contact LPA, they will get you in touch with folks near you who have children with dwarfism. You can see for yourself how wonderful they are. Just seeing a picture helped me, I fell in love with her, I am still friends with the family to this day! ...Enjoy your child. You are about to step into a life that is, at times, a different world. Consider yourself privileged, not everyone sees this world, not everyone asks or is asked to visit. You said you only have one life, so does she. Everyday, remind yourself of what has been entrusted to your care. Above all, raise her with high self esteem. Let her know how precious she truly is.

Those are some excerpts from the many emails we had. There is so much I wanted to tell her, all of the great stuff and memorable moments. I wish I could reprint it all here. What I would like to tell any parent out there who has received news that their child has a dwarfism is -- don't isolate yourself. There are experts closer than you think and a pretty large group who are just like you and your child. Don't expect the worst or the best. Yes, your child will have medical concerns and you should equip yourself to take care of your baby. No there is no "cure", most of us don't see this as something that needs to be cured. Don't for a moment think that this child is not worthy of you. You didn't think that way moments before you got this news, nothing should change. Your life will be very different than the one you expected---embrace that! You too will see it in a whole new way.

This Christmas is bittersweet for so many families in America. It leaves us, as parents, to keep the joy alive in the midst of ongoing tragedies. It is challenging to listen to the joy of my child, expressed in his innocent laughter, while remembering the last evening news report. I never want that innocence broken. However as the years pass and he grows, I know that protective shield is getting thinner. He does ask questions which are difficult for me to answer. I inevitably walk away doubting my parenting skills. I wonder if I answered him in a sensitive, yet supportive way or if our talk is going to be part of a therapy session later... I cannot count how many times I have called my mother and apologized for ever being a kid---because being a parent is harder than I ever imagined. She usually chuckles and reassures me that everything will be fine. (That's what moms do.) I felt the need to reassure all of the moms out there. Things will be fine. No matter what the future holds, you have an instinct built into you which will help you help your child. For those of us who have children who have a life different from others, I say pretty much the same thing. Even if you don't think you know what to do, you probably do. We also know when to seek advice from other parents. This is the time of the year when we feel the real need for support from those who've been there. I invite parents of children with dwarfism to join us at Little People of America. This is an organization started by actor Billy Barty 50 years ago. Originally, it was a place where LPs could go to be with other LPs. As it grew, more and more average height people were joining with their child or other family member who had dwarfism. Today, it is a beautiful mix of people who have this one thing in common. Today, it feels like family. I've met so many friends and someday, most likely, I will welcome some of them into my family. For your child, it fulfills the need to grow up with high self esteem, to be apart of something so close to their heart. It is something which will be a life long connection for you and your child. You can find out more by visiting them online at lpaonline.org. Jax and I wish all of you a peaceful and joyous holiday season.

Dwarfism Awareness Month Event -- Follow up

Written by Gary M. Arnold

It is not like any thought that putting a lot of effort into Dwarfism Awareness Outreach would eliminate the need to do more dwarfism awareness outreach But it can be a little discouraging when you are reminded about the critical need for awareness in the midst of, and very soon after, a fabulous dwarfism awareness event.  Last post I talked about traveling to New York for the Dwarfism Awareness Month Launch.  The event was empowering and the event was infused with pride, no doubt about it.  But the event wasn’t without its challenges.....

Find out what happened and why the need for a human blockade...
http://dwarfism-lpa.blogspot.com/