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.” haha.
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!