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.