Keegan's Birth

Keegan was born in June of 2006. My pregnancy was relatively easy, except for the fact that my doctor mistakenly told me I had Hepatitis C. After being completely freaked out, and having no clue how I could have contracted it (I have never had a blood transfusion or experimented with IV drugs), I found out that it was not true. Keeping that in mind, who could blame me for not thinking it was a big deal when they said it looked like he had extra fluid in his brain during my first ultrasound? I check with our pediatrician who told me that if they weren't making a big deal out of it, I shouldn't worry.

I spent the remainder of my pregnancy doing stress tests twice a week and everything always came back fine. I actually enjoyed the quiet time where I could just listen to his heart beat. I was scheduled to be induced at 39 weeks to prevent any undue stress on the baby. I am a planner so that was perfect!

I was told he would see a neurosurgeon at birth to check his brain and see what would need to be done. All in all I thought everything was hunky dory. We went to the hospital so excited to meet this baby, I was hoping for a girl. We didn't know the sex because they couldn't tell during any of our ultrasounds.

Induction is hardly fun but delivery and all that went well except that he was born face up. This caused his nose to be smooshed a little and he was working a little hard to breathe. I remember someone waking me up to tell me Keegan was being taken to the NICU because he was having some respiratory issues; they presumed it was from the delivery and that too much suctioning had caused some inflammation. I was exhausted and once again everyone seemed pretty calm so I didn't worry.

The calm only lasted until they didn't bring him right back to me, then the first wave of fear reached me.

This is what I saw when I went to visit him...

My little 7lb 14oz baby wrapped up in wires, beeping, eyes covered, mouth taped, ENCLOSED...Not what I was expecting!!!!

The first 3 days are still a blur, I pushed everything aside and focused on taking care of my baby. I spent as much time as I could sitting with him in the NICU.

He was also jaundiced so he was under the UV light with his shades on to protect his eyes. I remember joking that he was trying to get a tan for Summer.

He had a tube down his nose to feed him (it was originally in his throat but he wouldn't tolerate that); I remember that sending another wave to the pit of my stomach.

On the third day, my heart shattered. I was discharged and Keegan was not. I had to leave without my baby. I don't think there are many things harder than that; besides going back everyday and doing it over and over again for the four weeks while Keegan was in the NICU. It was extremely hard to watch so many moms leaving with their babies in their little car-seats.

During the first week a case manager sat down with his dad and I and told us Keegan was diagnosed with Septo-Optic Dysplasia. They couldn't say for sure but they didn't expect him to have very good vision. He saw an Endocrinologist who ordered blood work to check his hormone levels and we were told he would need to start medication to replace those that are missing. They went on explaining everything that was going on, and tried to reassure us it wasn't our fault, nobody knows why this happens, I didn't do anything wrong etc etc. They laid out the plan what needed to be done for Keegan to go home, the only thing that mattered to me. They had to get rid of the jaundice, he had to get his hormones within normal range, he had to eat enough on his own and gain weight.

I did the best I could to hold it together, only allowing myself to cry in the shower and in the car on my way to and from the hospital. I started to feel like he was never going to come home.

I had planned to exclusively breastfed but I was discouraged from even trying because Keegan wasn't eating enough on his own and the nurses needed to know exactly how much he was eating. This really upset me, but I wanted him to come home so I was willing to do anything. So I pumped all the time labeling each little bottle with care. At one point they thought he might be jaundiced from breast-milk, so they tried formula and Keegan threw up every bit of it. They tried soy based formula and he still wouldn't hold it down. They finally agreed to go back to breast milk, eventually the jaundice went away.

Keegan still wasn't eating enough so the doctors talked to me about putting in a g-tube, and I agreed because that would be the only way to get him home. The day his surgery was scheduled the Endocrinologist came in and urged me to hold off on having this surgery. She told me Keegan's growth hormone levels were very low and he needed to take medicine to replace it and that most of the time it will increase appetite. The medication took a week to be delivered and I had to learn how to give him an injection. After getting the growth hormone, he did begin to eat better.

Keegan was always a thumb sucker! One great thing about him is that he has always been really good at self-soothing. That thumb's gotten him through some rough times.

Keegan's dad had a lot more trouble dealing with everything and couldn't handle the emotions that came from Keegan having special needs, and our already rocky relationship took a nose dive. On the day Keegan turned a month old we got into a fight about him not going to see him at the hospital and things got out of control, again. I finally reached the point where I wasn't going to take his emotional and physical abuse any longer; I had him arrested and pressed charges. I had Conner and Keegan to take care of and I couldn't do that dead. That is another story and doesn't have much to do with Keegan so I will leave it at that.

After 37 long days in the NICU, he finally came home! During those four weeks I felt like my life was on hold. I didn't want to do anything. I felt guilty for going to see fireworks on the fourth of July with friends and family. I spent my days pumping, making trips to and from the hospital, and trying to spend time with my 3 year old Conner. Even though the NICU was not exactly a positive experience for me, I am still so grateful for the nurses who took care of my baby when I couldn't, and the doctors who diagnosed him. Keegan was diagnosed extremely early, mostly because his case is more severe on the spectrum of this disorder. It is common for kids with this disorder to go undiagnosed for years. Overall I learned a lot from the whole experience, and it only prepared me for what was, and still is, to come.

Despair

On the ride home I feel like one of the puddles on the ground, a collection of many little raindrops; cars splashing through and disturbing its peace.

I cry quietly because I do not want to upset anyone else in the car but I am secretly devastated. I wonder how many times can I possibly be completely devastated in one lifetime, and over almost the same thing: Keegan.

We were so excited about the Berkeley trip, and to find out what Keegan can see. Never did I expect to hear that he flat out doesn't see. The last time we went Keegan was 18 months old and it was such a positive experience: they did tests to see what his potential vision was and gave us all sorts of information.

That was not the experience we had this time around. First of all it was raining, which spoiled most of our plans so we were already disappointed. We were lost, walking around the campus at Berkeley for a half hour with no clue where we were going. After multiple phone calls I finally reached someone at the low vision clinic and stayed on the phone with her while we walked back to our car, loaded the kids up, and found the right building.

Keegan was soaked (we never expected to need the rain cover for his new stroller so we didn't have it with us) and my hair was a wreck but I was relieved we made it. I expected the appointment would fully make up for wandering in the rain, and then it didn't. We spent about 20 minutes in the little room, with the same women we saw four years ago. They each looked into Keegan's eyes and exchanged hushed words; one woman told me that Keegan is blind. He doesn't see. I can't remember exactly what she said because mostly everything was silent in my head for a good minute or so.

She asked me why we were even there, what his ophthalmologist said. She explained very bluntly that he doesn't see. She works only with children with low vision, and he doesn't respond to light, his optic nerves are very small and all twisted, and some other terms that essentially meant he doesn't see. He might have very little light perception and that's it. She asked me if I had any questions, I couldn't even form a coherent thought. We probably talked for about 5 minutes in which she told me not to even focus on vision and to switch tactics and focus on his other senses because there is no point wasting our time with vision. I told her we were expecting to see a neural-ophthalmologist and she made it seem like it was pointless, she also told us not to bother with glasses they won't do anything.

I remembered the nurse who told me not to get so excited about Keegan's seizures being under control because it never lasts long, and wondering if this woman was wrong too. My internal reaction is that she is wrong. I explained some of the things he does that made me think he can see some things and she dismissed it saying he must have used his hearing. I had to keep telling myself to hold it together, just a few more excruciating minutes. I didn't allow myself to even begin processing what happened until we were on the road back to my mom's house.

Watching the rain I wondered what it would be like not to see and how much I take that for granted, how much I take for granted period. If you know me, you know that I am not a negative person; I always look for something positive in any situation. Maybe you think it shouldn't be such a shock to hear that Keegan is blind since we were already under the impression that he was legally blind with a potential vision of 20/500.

I even thought – why is this so gut wrenching? Then I think about the stories of kids who can do much more with the little vision they have than anyone expected. I wondered what this means for Keegan now. Will he ever be able to learn to walk without any vision? He already has so much going against him with the brain abnormalities that make everything so difficult and he can't see?!

Then the knockout punch: I can't fix this. I am always fighting to make him normal, as normal as possible. I am always fighting to help him move forward developmentally. I try to make him appear as normal as possible. I would do anything; give ANYTHING for him to be normal. But he isn't, and without a miracle he will not be. I can't fix this with therapy or medication or anything within my means. That kills me! I don't like to entertain the thoughts but I wonder if it's my fault. The what if's flood my mind and my heart breaks all over again.

People say things all the time about having to care for him for his entire life, and I never think that far in advance. I always hoped that he was just going to be delayed, one, two, five years. I think one day he will catch up and it won't matter that he is five years behind. It is becoming blatantly obvious that my hope is not a reality; the alternative is overwhelming. I can't even imagine going on like this for years and years. So I wonder, do I just give up now? All of this fighting in hopes of helping Keegan progress with so little improvement. So much time and energy and I'm seriously running out of fire. Then I realize I need that fire rekindled, I need encouragement.

I love my friends and family but all they can do is sympathize. Even reading this cannot impress upon you the severity of my anguish, many just can't understand. My desire to attend the conference in Chicago is even stronger now. It isn't simply a want; I need this. I feel very strongly that I will gain more than just knowledge; I need fellowship with these families. I need to spend time with people who are in my position and I crave encouragement from those who are further down the road. So I guess this is just another time to adjust my sails. I have to focus on something else, work towards something positive and that will be the MAGIC convention. I still need a ton of help to keep pushing forward, and to focus on something positive instead of letting all of this sadness swallow me whole.