This is the story of my daughter Oliana who was born blind. To read her complete story start with the blog titled Oli's birth. You can email me at shannongardner@live.com




Saturday, November 24, 2007

Oliana and the Baby Food

Oliana has made huge accomplishments these past few months. Eating baby food was just one small feat for her. It may seem small for most people, but for a blind baby it was huge!! Not only can she not see her food or the spoon coming to her mouth, but she doesn't see other people eating and doesn't know that that's what everyone else around her is doing. For the first week that we tried she would just clamp her little mouth shut and wouldn't open for anything. Then after that she would push her tongue out and want you to put the food on the tip of her tongue, which, needless to say, didn't work very well. Finally, Seth just started prying her mouth open and shoving the food in her mouth. He would pry it open and say "open your mouth Oli" and put the food in. It sounds harsh, but it worked. After about a week of that she finally got it and all we had to do was tap her mouth with the spoon and say "open your mouth Oli" and she would. Now she loves her baby food! Good thing she catches on quick. She even grabs the spoon with her hands and puts it in her mouth to try to feed herself now too. She reaches her hands out to find my hands and when she finds them she finds the spoon and then takes over. Its quite neat to watch her figure it all out. She also has learned that I put the bowl of food on the tray. She puts her hands on the tray and finds it and has great fun playing in her food.

We started reading braille books to her. I read them and guide her hands across the braille as I read. At least I do sometimes. Sometimes she does it herself. I sit her in my lap and put the book on her lap so her arms and hands are free to roam the pages and she wishes. I put her hands on the pages so she knows right away that we are going to be reading a braille book and you should see her. Her little hand just starts waving back and forth back and forth across the page. Its the neatest thing. We only have a few braille books, but I would say that they are definitely her favorite.

Our latest trip to LA was exciting too. She got a flat conformer, or one without a peg in her right eye this time. So she's got flat ones in both eyes now. So nothing sticking out of her eyes anymore. They look really good. Her right eye is so much bigger now. It's almost the same size as the left. Our ocularist, Beverly, said that she should get her prosthetic eyes at about a year of age so only 5-6 more months to go!!!!! YEAH!!!! She's going to get green I think. Just like her Daddy.

One more piece of exciting news. She's just about sitting up. She can sit for about 10-15 seconds before she falls forward. Almost though. I'll keep working with her. Kekoa said her name for the first time today. He called her O-ee. How cute!! He's shown much more interest in her now that she's doing a lot more. He's always giving her his toys or his blanket (and he doesn't ever share his blanket with anyone). He still likes to kiss her and hug her. He's always very nice to her. I'm sure that will change once she starts taking his toys!! I'll hear "Mom O-ee won't share" HA HA!!

Monday, October 8, 2007

"Fixing" Oliana

I've recently been involved in a conversation about "fixing" Oliana. It seems strange to me that most people I encounter what to fix her. I don't consider her broken, but everyone else wants to change her. They ask me about eye transplants and assure me that in the future she will be able to see. I think the real problem is accepting something that is out of the norm. This world was created for sighted people and people who can see just can't imagine what it would be like not to. Anything that is different for us is very scary. It's alright to be scared and to worry about her and want the best for her, but she will have every opportunity available to her. While I appreciate people's concern we don't really need to be concerned about changing her. Everybody is born with imperfections. Oliana's is just more visible.

I am getting tired of having to defend her and her blindness. I constantly am having to reassure people that she is okay and it is okay that she's blind. I don't think she'll ever be able to see and there really is nothing wrong with that. I don't want her to grow up with people insisting that she will be sighted one day. Not only to give her false hopes, but I don't want her to think of herself as a "broken" person. She is who she is and she will always be.

Right now she is telling me to get off the computer because my typing is keeping her up. Even though she is in the other room!! She keeps grunting and groaning when I type, so farewell. Sleeping beauty needs her sleep!! Thanks for listening.

Saturday, September 15, 2007

KEKOA

Ten years ago if someone would have told me I would have two kids I never would have believed them. I couldn't picture myself having ANY kids at that point. Now, to have two perfect little people in my life...Two people I've known such a short while, but who have changed me forever. I don't think I can begin to put into words the love I have for them.

Kekoa is growing up so quickly. That first year seemed to last a lifetime (not the easiest baby) and now he's almost two. He's talking a ton and is a very opinionated little boy. He sure lets us know what he wants and what he doesn't. I think he's going to be a very knowing and compassionate person. Sometimes when I look into his eyes it feels as if he knows everything that I'm thinking and feeling. I get a sense that his soul is much older than he is. There is something very special about him. He's proven that to us with Oliana.

I picture him in the future as a power house. Always driving forward trying to accomplish his dreams, not letting anything get in his way. It brings tears to my eyes thinking about how he's going to help his little sister. Not by doing things for her, but just by being who he is. I spent a lot of time in the beginning feeling sorry for him. Sorry that much of my attention would be focused on Oli. Sorry that he was going to have to witness humanity at it's meanest at such a young age. I'm now starting to feel that this will give him opportunities and life lessons that he may not have gotten had he had the "normal" family. Lessons I may not have taught him otherwise. Lessons I may have overlooked.

He'll learn to love himself and others for qualities not visible on the outside and that the "eyes" are not always the windows to the soul. He'll learn that beauty is not always in the eye of the beholder but rather in the heart. He will learn to appreciate the world through other senses to identify with his sister. He has already started to do this by closing his eyes and feeling his way through the house. Most importantly, he will learn that he can achieve anything he wants in life and not make excuses for what he doesn't have. I hope he'll be confident and never feel sorry for himself or his sister. I hope he learns that without grief in our lives we never fully appreciate happiness. Most of all I hope he knows how much I love him and how proud of him I already am.

Monday, September 3, 2007

Many new things

Hello everyone. Sorry it's been so long since I've posted. Lots of new things have happened in a month. Oli got her second set of conformers last Tuesday. The conformer on the right side is now twice the size of the old one. It has stretched a lot!!! The ocularist left the same size one in the left side in hopes of catching up the right to make them more symmetrical. We also saw the geneticist and she said that Oli does not have a syndrome. It was a gene mutation that caused her eye condition, along with her other abnormalities. She also discovered that she has a small pituitary gland. She said that we will have to monitor her growth carefully and make sure she is continuing to grow. If she doesn't follow a normal curve that's okay as long as she follows a curve. Otherwise she may need growth hormone which is a daily shot. Lets pray for the best. She said the mutation was either on the sperm or the egg and there would be a 5% chance that we would have another baby with the same condition. Oli however, has a 50% chance of one of her babies having the same problem because it is a dominant gene in her. And yes, she can have babies with 2 uterus's. She would just be at risk of going into preterm labor because each uterus is half the size of a normal one and the baby may not have enough room to grow to full term. She did give her hope though, because with gene therapy they may be able to remove her egg, fix the mutation and re implant the egg using in vitro fertilization. AMAZING!!!!

We also found out when they re-examined her kidneys that she still does have hydronephrosis (fluid in her kidneys) and kidney reflux. Kidney reflux is when the fluid in her bladder backs up her ureters (the tubes that connect her bladder to her kidneys) and into her kidneys causing them to dilate, which in turn causes the hydronephrosis. The radiologist said that she should grow out of this and her anatomy is normal. She just has to be on a long term antibiotic because she is at increased risk of having kidney infections. We will be seeing a urologist regularly to monitor them. If she does not grow out of the reflux by the time she is 5 they will do surgery to correct the problem.

While we were in LA last week we took the kids to the ocean. I think Oliana really enjoyed it. She was fussing before we got to the beach and as soon as she could hear the ocean she calmed. She was so content while we were there and kept turning her face into the breeze. Kekoa also loved it and never wanted to come out of the water. Our little water baby.

Oli continues to flourish and is more fun every day. She is now smiling. She has a little stuffed musical dog that always makes her smile. She squeezes him and pulls him to her mouth. She is getting better with her hands. She likes to touch our faces too which is really neat. She is finally able to "see" her mommy and daddy. It's funny because she'll throw her hand up and when she finds our face she just leaves it there clenching and unclenching her fist. She has a play gym that I put in her playpen and attached a kick mat to the end that plays music and makes farm animal noises. She really enjoys this too and spends a lot of time in there kicking her feet and batting at the toys hanging from it. It's in the play pen to make her feel more secure. Sometimes when she's lying somewhere that doesn't have sides she gets scared when she doesn't touch anything when she puts her arms out. She'll get really stiff and hold her breath. In the playpen she has sides to come in contact with when she throws her arms out. This is important for her development. Plus I want her to feel calm, secure and in control while she is playing. She is cooing also. She "talks" way more than Kekoa did. She just babbles away, especially when she has her hands in her mouth. It's funny.

I'm feeling more comfortable in my new shoes these days. Being the mommy of a blind baby doesn't feel so overwhelming. It feels special. I have my work cut out for me, don't get me wrong but Oli shows me more everyday that what I'm doing is right and that she loves me and trusts me. She may not see where we're going but she trusts me to always keep her safe. She doesn't turn to the sight of me but she can identify my voice in a room full of people. And even though I know that she'll never see how beautiful she is, I'll be able to show her in so many different ways. I don't know why God chose me to be her mommy but I am truly thankful that he did.

Sunday, August 5, 2007

Mr. Haddad- Oli's ocularist

We went last Tuesday to L.A. for Oli's first visit with the ocularist. It went very well. He got conformers in both her eyes. It was a little harder on the right side than the left but he was successful with both.

A conformer is an acrylic apparatus that will stretch the tissue of her eye and will hopefully allow her to wear prosthetic eyes. It is made out of the same material as a hard contact. It is clear and fits under her eyelid and over her eyeball. It is a little uncomfortable when Mr. Haddad is putting them in, but once in they don't cause her any discomfort. (Believe me, she would let us know if they hurt!!) It is suppose to stretch the tissue but there is no conclusive research studies suggesting that it promotes bone growth.

He said he is very happy with her first visit. Although her eyes will never look completely normal and will always be a little small he thinks we will be successful in getting prosthetics in. I told him that I don't have any expectations. I know she will be beautiful no matter how big her eyes are. He said that as she gets older we may need to see an ocular surgeon about putting a permanent implant into her eye socket. This is because eyes only grow to the age of 3 years. With micropthalmic kids their eyes either don't grow at all once born or only grow a small amount. So as the conformers stretch the area around her eye, her eye ball gets smaller and smaller in her socket and is farther and farther back in it. This results in the conformer or prosthetic eye getting thicker and thicker to fill the space. A permanent implant would allow the prosthetic to be thin and less uncomfortable. It would be a surgery and we will wait until she's a couple of years old to decide if this would be right for her. It will also depend on whether or not she has any light perception.

She doesn't seem to mind them at all even though now she can't close her eyes completely. There is a little stem sticking out so she can't close them. The stem is there so that Mr. Haddad can grab on to it to take them in and out. They are so small there would be no other way to do it. It looks a bit archaic though, to have something sticking out of her eye. At least they're clear. She won't have to wear stem conformers forever. Just till they get bigger. It's really neat to be able to see her eye lid and eye lashes on the left side. I can see the iris better now too because the clear magnifies it. She has a perfect little blue eye. We also get to pick the color of her eyes when she gets her first pair of prosthetics. How lucky am I? It isn't all mommies that get to pick their baby's eye color!!!!

Saturday, July 28, 2007

MOST FREQUENTLY ASKED QUESTIONS

#1 WILL SHE BE ABLE TO SEE?

I don't think that she will be able to see. She is missing her optic chiasm and has very small optic nerves which they don't think will function. She really doesn't have much of an eye on the right side either. Only time will tell. When she gets a little older we will know more by what she reacts to. When she is much older she will be able to tell us.

#2 IS THERE A BLIND SCHOOL IN LAS VEGAS?

No, there isn't at this time. We will be moving states when she is a little closer to 3 years. There are a lot of states that have schools and we'll just have to do our homework to decide where we want to go. It has to be someplace that is good for the whole family.

#3 WILL SHE READ BRAILLE?

Yes, she will. We will all be learning braille. She needs to be exposed to it now just as a sighted baby is exposed to letters and words. A sighted baby has more of an advantage because he/she can see letters in books, signs, t.v. ect.... We will be getting braille children's books for her now so she gets to feel the braille letters and words and is exposed to it as early as possible. We can also get a braille label maker and label things in our household with braille. The more the better. Only 25% of blind people are employed. Of that employed 90% are able to read braille. This seems to be the key. Just as we would not let Kekoa be illiterate, we will not let Oliana.

#4 WILL SHE BE "NORMAL" OR WILL SHE BE MENTALLY RETARDED?

She will be normal. There is nothing wrong with her brain and nothing suggestive that she will be anything but smart.

#5 WILL SHE WEAR PROSTHETIC EYES?

Yes. We will be seeing an ocularist regularly to fit her eyes with conformers. These conformers will stretch her eye sockets and prepare them for a larger and more normal looking prosthetic eye. Don't call them glass eyes because they are not made out of glass. Most are acrylic. Mainly I just don't like the term "glass eyes". It sounds scary. If you want to see pictures go to the MAPS website that I have a link to and click on the info for conformers and prosthetics.

#6 DID I KNOW THAT ANYTHING WAS WRONG WITH HER WHILE I WAS PREGNANT?

No. Some people that have babies with micropthalmia do find out about it while they are pregnant. I, unfortunately, was not one of them. The ultrasound tech should have measured her eye sockets but failed to do so. If she would have measured them properly I would have known that they were abnormal because they would have measured small. This would not have changed anything however, I would have just been a little more prepared and it wouldn't have been such a shock. It would have made those first 3 days a little easier.

#7 HOW AM I DOING?

I am fine. I will not break down if you ask me questions about her or ask how she is doing. I just had a baby and am very excited about that. She is just fine. She can't see, but she is fine. It's okay to ask questions about her and to be excited for me. I wouldn't trade her for the world. I'm not ashamed of her and I don't like it when people just ignore the fact that I had her. Which some people have been doing. She's a wonderful, peaceful, happy baby and I am proud of her.

Sunday, July 22, 2007

Guilt

I just wanted to write a quick note thanking everyone for reading my site and caring about my baby and my family. Some days are easier than others and a lot of times it's just really sad. Everyone keeps telling me how strong I am, but many days I just don't feel very strong. It's very hard to know that your child is not going to have a normal life. Life is hard enough with all of your senses and I just can't imagine what hers will be like. I feel very guilty too. I keep wondering if there was something I could have done to prevent this. Someone recently asked me if I thought she was born this way because I work in the hospital. Like maybe I caught something there that made her the way she is. That was a very hard thing to be asked. I wonder if other people are thinking this to. Am I to blame? I don't know. The doctors say that it is probably something that just happened. Unless it is some kind of genetic syndrome that Seth and I carry. We will know more about that once we see the geneticist on August 2nd.



I know that in time it will get easier and that she will adapt, grow, and develop normally. I know that she will be fine, but right now it's hard to picture the future. I really would give anything for her to be able to see. If I could trade places with her, I would do it in a heart beat. Many days I'm angry too. Why did my baby have to be born with a disability? I'm sure a lot of parents with special needs children feel the same way.



I just hope that I can give her everything that she needs. I hope I am good enough. I guess I'm just feeling overwhelmed today....everyday. I try to give myself encouraging words and know that she really will be okay. I worry about what the future holds for Kekoa too. I worry about him being teased and him overhearing people talk about his sister. I know that these things will happen and it makes me very sad. I don't want people to say bad things about her or stare at her. I'm sure it will happen though. It already has. People ask questions, they want to know whats wrong with her and why she is missing her eyes. We as a family have to get used to this. It's very hard right now. I just want to stay inside all the time and protect her and Kekoa. I suppose it will make us stronger and make us more appreciative of the little things. Our lives really are what we make of them. Who knew what emotions a little 6 pound package would bring. Lots of happiness and sadness all at the same time. Most days more happiness. She really is a very beautiful, special baby.

Tuesday, July 17, 2007

A Special Bond

I have one more interesting and special story about the day that Kekoa met his sister. It may be unbelievable but it truly happened.

Seth brought Kekoa to the hospital on Friday afternoon the day after she was born. First he ran around the room, of course, then Seth lifted him up so that he could see her. He looked at her, said "bee-bee" (his word for baby) and gently kissed her on top of the head. What he did next shocked us both and still makes me cry every time I tell this story.

Seth put him on the floor and he immediately closed his eyes and started walking around the room with his hands out in front of him. Like he was blind! It was the most remarkable thing that I have ever seen!

Some people may think that he was just doing it because she had her eyes closed and was sleeping, but I swear to you, he had never done anything like it ever before. I honestly in my heart believe that he knows that she is blind. Still to this day, sometimes after he kisses her he walks around the house with his eyes closed and his hands out in front of him.

From the moment that I saw him do this I knew that he was meant to be her brother. I know that he will always help her and be her eyes and they will share a special bond that will last forever.

By the way, Kekoa was only 17 months old!

Friday, July 13, 2007

Back from L.A.

Well, we're back from LA. We saw Dr.Goldberg. He's supposed to be one of the best opthamologist's in the country. He told us that her eyes are really not that bad. HOORAY!!!!! They're in about the 10th percentile. He said that it's very good that she has all her eye structures, her eyeballs, eye lids, eye lashes, and eye sockets. Sometimes kids with micropthalmia do not have all of these parts. He said that her eyes will always be small but they may catch up a little. He recommended an occularist (also in LA) that can fit her eyes with conformers which will help stretch the eye sockets and prepare them to be fit with prosthetic eyes. He said we can wait up to a year to see the occularist or we can go now and see if he is able to fit something into her right eye. He said that the occularist will probably start with her right eye first because it is the smaller one. We will of course go as soon as possible. Unfortunately there's no one in Las Vegas. I asked him about her vision also. He said that if she is truly missing her optic chiasm she will not be able to see anything. If she has part of it she may see some light. The MRI report said that she is missing it, but it depends on who is looking at the scan and how proficient they are. He also said something that really surprised me because he is, after all a doctor. He said even if she is completely missing it that maybe she will see something. "After all, we're just doctors and science isn't absolute." Hope!! I'm more used to the idea now that she'll never see anything, but wouldn't it be wonderful if she could. Sometimes she fools me because it looks like she's looking at me with her left eye. I try not to get my hopes up and no matter if she sees or if she doesn't she's still my perfect little angel.

While we were in California we drove down to Sea World. I think Kekoa had fun. Except for the pigeons. He's terrified of them!! They were at his feet when we were eating lunch outside and he absolutely FREAKED OUT!! I got a good laugh about that. It was pretty funny. He liked the Shamu show the best. I know that it's silly, but when the whales swam out and started jumping, I started tearing up. They were so beautiful and graceful and I looked down at Oli with her eyes closed and thought, this is something else that she will never see. Someday maybe I won't have these thoughts anymore.

So.... a little bit of hope from the opthamologist. Oli's developmental specialist came out today and said that she is right on track for her age. She is reaching her arms out and she said that this is a very positive sign because a lot of blind babies keep their arms and hands by they're body and don't like to reach out. She does. She's always reaching out. When she's up on my shoulder she also likes to pick up her head and turn her face towards mine. I turn my face in towards hers and she bops her face against mine. She likes to feel my breath and my lips moving against her cheeks and mouth. It's very cool and the developmental lady said this is a very good sign. We're starting to play with her more and put things in her hands and will continue to do more once she is more awake. She still sleeps most of the day. She loves music. Especially Hawaiian music, go figure. He roots are shining through. This makes my husband very happy. So.... I'll keep every one posted. We go to the pediatrician on Tuesday for her 2 month shots and to see how she's growing. Thanks for caring about my baby and following her story.

Monday, July 2, 2007

DOCTORS, DOCTORS, AND MORE DOCTORS

We took Oliana home on Saturday and on Monday morning we had an appointment with an opthamologist. At that point Oli's eyes were still fused shut so there wasn't a whole lot she could tell us. She was worried that they were still fused and hoped that they would open on their own. She did give us some very important referrals. One was to a Blind foundation in town and one was to a doctor called an occularist.

She did look at the CT scan and tell us that her right eye is extremely small as is her left, but her left eye is twice the size of her right!!! So her right eye is very,very,very tiny. The CT report said that her optic nerves were also extremely small and hard to visualize. The opthamologist's opinion was that it was unlikely that she would be able to see. We had prepared ourselves for such news. She told us that we needed to have endocrine labs drawn right away because her pituitary gland is located in such a place that it was likely there would be something wrong with it as well. She said the pediatrician should order those labs stat!!



We went home to enjoy our beautiful little baby. For a few days at least.



That Thursday we had a pediatricians appointment and an invitation to an open house from the Blind foundation. There, we met the family that started the foundation. They had a son with the same eye condition as Oli and they gave us some good information. They told us to keep hope, that maybe she would see something some day. The doctors told them that their son would be completely blind and now he can see a little red light. He is now 3 years old. They also told us that it was imperative that we see an endocrinologist and have labs drawn because kids with micropthalmia almost always have something wrong with their pituitary gland. This is the same thing that the opthamologist had said.



We went then to the pediatricians office and were not impressed. She didn't want to do anything. She wouldn't order any tests at all. She said we didn't need an MRI of her brain yet, she didn't want to order endocrine labs until she talked to the opthamologist and she wasn't worried about the fluid in Oli's kidney's and wouldn't send us to a urologist until she was 3 months old for a follow up ultrasound. Even though her partner told us in the hospital that we needed to have this done. Needless to say... We never saw her again. But she is only the start of our frustrating journey with doctors and insurance. No one seems to mind taking their time. It's not their child, so why should they hurry.

Later that week after the pediatrician appointment, Oli opened her left eye. I finally got to see her beautiful little eye. I know it sounds silly, but all I wanted from the moment I first saw her was for her to open her eyes and look at me. Now I know that she will never look at me but I'm getting more used to that idea. A mother really does need to look at every single part of her baby's body and I just felt something was missing until the moment I got to see it. It was very tiny and just kind of danced around in her head, but to me it was the most perfect eye I had ever seen.

I called the woman from the foundation that has the son with the same condition to ask the name of her pediatrician. I knew that our doctor just wasn't comfortable taking care of a sick child, which is really sad because that is what she went to medical school for. She gave me the name of her doctor and we got in to see her that week. Dr. Rosemary. She has been a godsend. From the moment she found out what was going on with Oli she has been all over it. She made an appointment with an endocrinologist that day for us and 4 hours later we were on our way to see him. She also made a referral for us to get an MRI done of her brain that same week.

The endocrinologist told us that he was concerned about her pituitary gland, mainly her growth hormone. At this point she was 3 weeks old. He ordered some labs and we had them drawn the same time we had the MRI done. And guess what.....it's now 5 weeks later and we still haven't gotten all the results back!!!! We really did like this endocrinologist but come on! What is the problem. I have called their office at least 3 times a week since then. I called last Friday and spoke to him directly to tell him we are very frustrated that the labs are not back. He did tell me that if they don't come back this week he will go directly to the hospital to get the results himself. We'll see. The only abnormal lab that we have gotten back so far is her Prolactin level. That's the hormone that is secreted in breastfeeding moms for milk production. It's only a little bit elevated and I wonder if it's because she's being breast fed and my hormones are secreted in my milk? Her growth hormone did come back normal on Friday and he said that it would be unlikely that she would develop a problem in the future. Like I said, we're still waiting on a few more pituitary labs.

We had the MRI and the lab work done at the hospital that I work at. I asked a nurse I worked with to come down and draw her blood for me. I didn't want a lab technician drawing her blood because they typically just deal with adults and I know how hard it is to get blood from a baby. My friend came down and drew the blood. I had to put my nurse hat on that day and be strong for Oli and Seth. Seth did not do so well with our poor baby screaming her head off, not to mention the fact that needles poking into skin just about make him pass out!!!!

It's hard to separate between being a nurse and being a mom. I slip into the nurse role easily because I do this every day at work, but its just so hard when its your own baby. I don't want to nurse her. I want her to be normal and healthy. I have to be there for her though and it's much easier to deal with doctors and other nurses when they know your one of them. They really do take care of their own. Seth told me in the hospital that he thinks I became a NICU nurse to prepare for Oli. God works in mysterious ways doesn't he. Who would have thought....

After the labs we then took her for her MRI. It was nice because we got to stay in the room with her. Afterwards we went up to my unit to have one of the doctors I work with look at the scan. (Like I was going to wait a week for the report to be sent to our pediatrician!!!!) When the Dr. pulled up the scan on the computer my heart was just pounding in my chest. I was so terrified that her brain was going to scrambled. As soon as the image came on the screen I was relieved. I'm not real familiar with reading MRI's but I knew enough to see that everything looked to be in the right spot. As usual the doctor starts talking about everything except what was really important to me. He was going on about how small her eyes were, especially her right. I was polite though and saying "Yes. Oh yes, I see." What I'm really thinking is, why can't you tell me about her brain!! I already know her eyes are small!!! Finally, he says her brain looks good and that he doesn't see any abnormalities. Whew!!! The next week we went back to our Dr. Rosemary because Oli has this thing where when she spits up it comes straight out her nose. It looks very uncomfortable and I'm pretty sure she has reflux. The doctor put her on Prevacid and told us to go see a pediatric ENT. The MRI report was back and she gave that to us as well. It said that she has severe bilateral micropthalmia with small atretic optic nerves. She is also completely missing her optic chiasm. The views of her pituitary showed that she as a ectopic posterior pituitary gland which means that the posterior part of her gland is in the wrong place. It may or may not be functioning correctly. We'll see what the labs say.

The next week we took her to an ENT. He said that her the bridge of her nose and her nasal passages are very wide and this is why she spits up through her nose. There is nothing he can do for her now. Everything else looks normal, but she may need to have it narrowed when she gets older if she still has trouble.

We are also taking Oli to Nevada Early Interventions. They will help us with her development. She will have a vision teacher come out to our house at least once a month to teach us how to teach her.

We took her to see a urologist to follow up with her kidneys. He said that we need to have another kidney ultrasound and a procedure called a VCUG. That is where they will insert a catheter into her bladder and inject fluid into it. They are looking to see if she has reflux, where the fluid is backing up her ureters into the kidneys. This can cause kidney infections and if she has it she will need to be on a daily antibiotic. Babies can grow out of this but sometimes if it is prolonged they will have surgery to correct it. The kidney ultrasound will be looking to see if she still has fluid in her kidneys. If it is bad enough, it could cause kidney failure. We hope that this issue has resolved on its own, but we will just have to wait and see. We saw that doctor a week ago and his office is supposed to be making an appointment for us. We still have not heard back. Surprised??? Oh, and he will be out of the office all month anyways and we will have to wait for him to come back to read it anyways. How convenient. Am I becoming a bit cynical??

We had her chromosomes drawn to check for abnormalities and they came back last week normal. We are waiting to get in to see the geneticist. She will make the final determination whether or not Oli has Frasers. There's a guy in LA that is supposed to be good also and we may go see him to.

She also went to a cardiologist because her doctor heard a murmur. She had an ultrasound of her heart which showed a small hole that is normal before a baby is born but that should close after birth. Sometimes it just takes a little bit longer. The right side of her heart is also enlarged which is because that side of the heart has to pump harder to get blood into the lungs because they are filled with fluid before the baby is born. Both things can be normal in a newborn baby, but we have to go back when she's 6 months old to make sure they have resolved.

Let's see...Did I forget anyone???? Like that isn't enough. I have an all new respect for the parents of the babies I take care of. I had no idea there was so much. It seems like all of her tests have come back just a little bit abnormal, but the main thing wrong with her is her eyes.

We go next Monday July 9th to see the occularist in LA. He is a plastics guy that will fit Oli with some sort of a prosthetic for her right eye. Hopefully just her right and not her left because we don't want to cover her good eye just in case she can see something. You use it or you lose it. She needs the prosthetic for her right eye in order for that socket to grow normally. We will know more once we go. I'll keep you posted.

OLI'S BIRTH

When I found out I was pregnant with my second child I was elated, even more so when I found out it was a baby girl. I had my son a year earlier and was wanting to add a little girl to the mix. My pregnancy was completely normal. A little morning sickness in the beginning but nothing to complain about. I had an ultrasound at 18weeks and it showed her to be completely healthy. Although she was healthy, she did have one major problem that the ultrasound failed to pick up. She was blind.

There were a few bumps along the way while I was pregnant. It was going well until I was 32 weeks along. I have had a back problem since I was 11 and have had multiple surgeries. My back is a major concern when I am pregnant and I was hospitalized with my son, Kekoa, at 20weeks for extreme pain which in turn caused me to go into premature labor. Thankfully they were able to stop the labor and I never had any other problems with him. Even during labor I didn't have any back pain!!!


When I was 32weeks pregnant with Oliana I hurt my back again while I was lifting Kekoa. I ended up in premature labor and was hospitalized overnight. They gave me 3 doses of Turbutaline which stopped the labor. My doctor then put me on bed rest. He wanted me to stay on bed rest until the baby was delivered, but...... 2 weeks later I convinced him I was fine. No more back pain, no more contractions and I had a one and half year old son to take care of!!! The doctor put me on Procardia to prevent premature labor and they even did a test to predict whether or not I was at risk to go into premature labor. The test came back negative and I agreed to take the medication, unaware of how horrible it would make me feel.


I work at a children's hospital as a nurse in the neonatal intensive care unit. Although I do work 12 hour shifts my charge nurses were aware of my situation and only gave me feeder-grower babies to take care of. This means that I get to sit a lot and feed babies. I wasn't expecting how horrible the Procardia would make me feel. I was scheduled to work Saturday, Sunday, and Monday. I took the medicine as ordered (4 times a day) and I couldn't function at work on Saturday. I felt terrible. I had no energy and was light headed. I knew then that if I wanted to continue working I had to stop taking it. Not the brightest idea I had ever had, but I needed the money for my maternity leave. I wouldn't be getting paid for the majority of it. So I stopped taking it on Saturday and by Tuesday morning I was contracting every 5 minutes. At first I thought they were Braxton Hicks but they were pretty regular. When my husband got off of work that evening we drove to the hospital 1 hour away. Once there they gave me another 3 doses of Turbutaline and sent me home with strict instructions to take the Procardia as ordered, complete bed rest and absolutely no more work!! I did as they said but Wednesday I was once again back in labor and delivery contracting every 10 minutes, dilated to 4 with a bulging bag of waters. 3 more doses of Turbutaline and THEY STILL SENT ME HOME!!! I couldn't believe it. My doctor was not on that night and when I went to his office the next day, still contracting every 5 minutes, he was not happy. He checked me again and I was now dilated to 5. This baby girl was ready to come out and we were tired of driving back and forth to the hospital every day. I told him I was not going back unless it was to have a baby. He agreed and said it was time.



I was nervous about having the baby at 35weeks, but I do work in the NICU and know that most 35weekers do fine. Sometimes they need a little help breathing, but most are okay. I was starting to wonder though, if anything was wrong with my baby. Why did I keep going into labor? I was healthy and no longer in pain. There was no reason my baby should be born preterm. Earlier in the pregnancy I kept having dreams that something was wrong with her. I just chalked it up to working where I do and being paranoid. I even told my husband that my job was starting to get to me. He agreed that I probably kept having these dreams because of the babies at work. Even though it never bothered me when I was pregnant with Kekoa. I just had a feeling something was wrong with her. Turns out, I was right.



Oliana came into this world on May 10, 2007 with her eyes closed. One of the neonatologists I worked with was present at her birth to make sure she was breathing okay and didn't need to go the the intensive care nursery. She came out pink and crying. He examined her, dried her off and congratulated me on a having a healthy baby girl. No one noticed there was something wrong with her eyes until they tried to put the newborn eyes drops in. Seth, my husband, came back from the nursery and told me that the nursery nurse thought that her eyes were still fused shut. I laughed. What 35weeker still had their eyes fused?? Little did I know..... I told him not to be silly, that they were just swollen. In the back of my mind I did think they looked a bit odd. When most babies are born they are very alert and open their eyes right away. Kekoa did. I kept telling myself that they were just swollen. Even when the nurse came in and told me that she was worried about her eyes I told her not to be, she would open them tomorrow once the swelling went down. She said that she would let the pediatrician know that Oli wouldn't open them and we would see about them tomorrow.



The next day was Friday and by that afternoon she still hadn't opened them. I was starting to worry, but only a little. Once the pediatrician came in and looked at her my whole world was turned upside down. Seth had left the hospital to take Kekoa home to feed him and take a nap. I was all alone to get the worst news I had ever received in my life.



The doctor came in, introduced himself and began examining her. I thought it was a bit strange because he was looking every where except her eyes. Finally he looked at them. Tried to get them open and couldn't. I said "They're just swollen right?" He said no he didn't think so. He thought that she either had very small eyes or no eyes at all. No eyes??? How could she have no eyes. Very small eyes?? I wasn't even thinking blindness. Then he said he thought that she had micropthalmia. Something I had never seen or heard of. I have never taken care of a baby with small eyes or no eyes. He said that it was very likely that she would be blind. My heart stopped. I couldn't breathe. How could this have happened? How could this have happened to me?? Where the hell was my husband!!!! I called my mom right away crying and saying that my beautiful baby girl might not have any eyes. Seth came in the room then with flowers and a huge mother's day balloon. Mothers day was in 2 days. I felt so sorry for him at that moment. He didn't know that his baby was blind and I didn'twant to have to be the one to tell him. I had no choice. I hung up with my mom and he kept asking me why I was crying. I think he already knew something was wrong with her eyes. I told him what the doctor had said. I don't even remember his reaction. I just felt terrible. This was my fault. I was supposed to grow us a healthy baby and I failed.

Later that day I called the doctor I worked with that had attended her delivery. He had already heard about what was going on and was calling Oli's pediatrician to get her a CT scan right away. The pediatrician was concerned that she might have something called Frasers syndrome. He had only seen one baby 15 years ago with micropthalmia and that baby had Frasers. He was concerned that she might have reproductive and kidney abnormalities. He ordered a CT scan, and a renal and pelvic ultrasound. They were all done a few hours later. The micropthalmia was confirmed, she had mild hydronephrosis (fluid in her kidney's) and 2 uterus's. What else could possibly be wrong with my baby? Was her brain okay? Would she be smart? These are all questions I wanted answered right away and no one could answer them. The pediatric group we were using was terrible and they didn't want to do any more tests. So the next day they sent us home with our beautiful,peaceful, blind baby girl Oliana. It would be a long time before we would have any answers.