The Tiny-Toed Angel

On July 18th my life changed! After a very easy delivery Aidan was born at 8:20 pm. (We placed bets earlier that day and I guessed he would be born at 8:15 pm!) He weighed 6 pounds 3 ounces. I remember the moment the doctor laid him on my stomach. I remember thinking he was way bigger than the doctors had anticipated. I also remember thinking he looked nothing like I had imagined!

He brought immediate joy to me, Jason and everyone who was in the room with us.

We had 2 hours with him before we received the first bit of bad news…

Had I known we would only have those few short hours with him to be blissfully ignorant to what was about to come…

Jason went to go get food. I was able to breastfeed Aidan. It would be the only time I would get to do that. He appeared completely healthy to me. We had no clue that Aidan was struggling.

The nurse took Aidan to the nursery to bathe him. It was in the nursery that the nurses noticed he was having "seizure-like behavior". I knew something was wrong because they didn't bring him back to me for a long time. The next time I saw him he was with the NICU nurses. They explained that they wanted to watch this behavior and monitor him more closely.

So on the night he was born, Jason and I had to go up to our new room without our baby. It would be the first of many nights without our son.

That first night Aidan went through many tests. We didn't hear any news until the following morning. When Aidan was only 12 hours old we heard the devastating news - the doctor (one of many who worked with him) sat us down and told us that his brain didn't develop as it should have. I remember at that very moment wishing the doctor hadn't even told us. I just wanted to take Aidan home and pretend none of this was happening. Because outwardly, he appeared very normal and healthy. It is hard to see him as being "sick". I also remember my life flashing before my eyes.

The news from here on just kept getting worse and worse. At first the doctors said he would just develop more slowly. They kept saying we needed to tackle the problem of his seizures first. Immediately Jason and I began searching for some signs of hope. We asked if there was anything we could do for him and the doctors at first would dodge our questions in a way. We didn't think anything of it at the time. Looking back we should've known how bad it was when all the doctors and nurses who entered his room were crying…

Then, inevitably, we had to hear the worst news a parent could ever hear. At one point I asked one of the doctors what would happen when Aidan's "baby" seizures began turning into "adult" seizures (his baby seizures are basically just slow rhythmic movements that most people wouldn't even notice). That is when the doctor said "He won't ever be an adult". I think I stopped breathing at this point. The doctor had to repeat that over and over to us. We could not grasp the concept that our baby was going to die. The doctor explained to us that Aidan had a severe brain condition and that most babies with this condition do not make it past 6 months of age. While some do live to be 2 years old or maybe even past that - it was very unlikely. Either way, his time with us will be short. Most will pass away from pneumonia because a lot of babies have a hard time sucking or swallowing and they get fluid into their lungs. With Aidan, his seizures might be what does the most harm. There are times when he seizes for 12 hours straight. His little body is under so much distress. Any one of those seizures could stop his breathing. The medicine he is on is already at its highest level. The medicine itself could also stop his breathing.

How does a parent deal with the death of a child?! I don't even know anyone who has had a child pass away? Does this even happen?!?

We wanted to know what caused this? Was there something I did or didn't do? Could we have caught it in an ultrasound?

This was something they could not see in an ultrasound unless they were specifically looking for it for some reason. But I had a very normal pregnancy and the doctors didn't really suspect anything was wrong. The doctors first addressed the fact that it may be genetic. They did genetic tests and so far the tests have come back negative. We are still waiting on a more in depth genetic test to come back - and if it comes back positive it means that I am a silent carrier for this condition. The doctors feel this is highly unlikely though. However, since he is our first born they just want to make sure. It is horrifying to think that this could happen again to another child of ours.

The doctors also checked me and Aidan for any infection that may have caused this during my pregnancy. Everything came back negative.

It all seemed to boil down to one answer - that this happened randomly. The doctors describe it as a "moment". For one moment during the first trimester there was a lack of blood flow to Aidan and it occurred when the cells were migrating and developing the brain. So that was it. That was our answer - it just happened. There was nothing I could have done or that the doctors could have done. And the saddest part is there is still nothing we can do.

The hardest part is all the ups and downs. We grasped and grasped for even a glimmer of hope. We never really got that. We just had to take Aidan for the gift that he is - our little treasure. The doctors stressed to us that he could stop breathing at any moment.

One of the hardest parts during all this time involved signing a particular piece of paper. Jason and I made the decision that if something were to happen - if Aidan stopped breathing - to not resuscitate him. We did not want him on a ventilator for the rest of his life. We decided to let nature and God guide us. We did not want our son living only because he was being kept alive artificially. Ultimately, we do not want Aidan suffering in anyway.

Aidan spent a total of 2 weeks in the NICU. The nurses and doctors were all so great. At one point we had to face the fact that Aidan was not going to "get better". He could've stayed in the NICU forever - or we could just take him home and love him. We chose to take him home and to try to make him as comfortable as possible.

Now we are at home - enjoying our time with our son and soaking up absolutely every minute we have with him.

We, as have a lot of people, have begun to see him as a little angel. We believe he has a great purpose here on earth. He was born and has made it this far for a reason. He has touched so many peoples lives. He has brought many people closer together in ways that cannot be explained. He is an absolute gift.

While we know that he is an angel of some sorts, it doesn't take away the fact that we as parents are human. We are absolutely devastated and heart-broken. I wake up every morning and cry because this isn't a dream. I fall asleep with tears in my eyes because I'm afraid I'll wake up and Aidan will be gone.

We as parents have been robbed of the simple joy of just having a baby. While he does fill our life with happiness, at the same time we are grieving. We grieve the loss of the dream. The dream of having a healthy child. Not long ago Jason and I were out for a walk and we were discussing what we think our son will be when he grows up. We talked about taking him fishing and playing baseball with him… we just assumed he would have it all.

Not only are we as parents grieving, but our parents are grieving the loss of a grandchild they had hoped for…our siblings are grieving the loss of a nephew they had dreamed of. And at the same time, we are all falling madly in love with who Aidan is now - not who we imagined him to be.

It is amazing how much I have taken things for granted. I breezed through my pregnancy. Was I foolish to think at the end of my 9 months I would have a perfectly healthy baby? I mean - this doesn't happen to people does it?! The chance that this could happen to Aidan were 1 in a million. And it happened! And it's not a dream…it is real. This is our life now - this is his life. He was never even given a chance to live! I find it extremely unfair - not so much on our part but for him! He shouldn't have to fight this hard to live. He shouldn't have to struggle.

Everyone asks if I am okay and if there is anything we need. Well, the truth is - I am not okay. I am changed forever - I am depressed. My heart breaks when I see him struggle. Is there anything we need? Yes - A Miracle! We need a miracle for Aidan.

I'm not okay with people (social workers, doctors, clergymen) asking me if we have Aidan's funeral plans arranged (I understand they are just doing their job). I just gave birth to a beautiful little boy and now you're asking me to plan his funeral?! This still doesn't seem real. What is real to me is that Aidan is here and he is alive and I don't want to give up on him. I'm his mother! I don't want to imagine my life without him…

I often wonder will he make it through the night? Will he survive this seizure? Not only do I ask that but I wonder will I survive? Will all this pain and sorrow eat me alive? Will I be strong enough for him? At this point I only eat so I have the strength to hold him. I only sleep so I have the energy to care for him. Everything I do is for Aidan.

It is so hard as a mother to see her child struggle and know there is nothing I can do for him - except give him love. But as a mom I want to go beyond that. I would trade my life for him in an instant. I'd give up everything I have…

As parents we could accept what the doctors have told us and prepare for Aidan's death. But innately as parents we don't want to give up on our child! We want to see him live, we want to have hope - we DO pray for a miracle.

It is extremely hard for me to see other children, other babies…pregnant women. I flash back to the time when I had hopes and dreams for me - for my children. Everything I had ever thought or dreamt about has changed. I had always wanted many children. Now I am deathly afraid to have more. Not only that - I do not want to replace Aidan in anyway. My whole life all I have wanted was to be a mother. But I never wanted to be a mom who has to watch her baby die.

I see other pregnant women - I see my friends with their children and my friends who are pregnant and I think how lucky they are. How lucky to not have to worry that their child will stop breathing in their sleep. How blessed to go though a pregnancy and end up with a baby who will live! All this time I had taken life for granted. I just assumed that I would have children and that they would be healthy and that they would live long lives…

I do not take life for granted now. I do hope everyone appreciates their children, their spouses, their family, their blessings…

Aidan is an angel to us and to many others. I really do hope he touches many lives while he is here…I hope he teaches us many lessons about life. Even though all this is extremely hard to handle - he still fills me with a happiness unlike any other. He completes me in ways I cannot explain. I love his yawns, his squeaks, his scent and his kissable lips (you have to see them in person!)…


More can be read about Aidan on his Caring Bridge site:
www.caringbridge.com/visit/aidansamuel

Aidan also got professional pictures taken in the hospital when he was 4 days old through a program called Now I Lay Me Down to Sleep - taken by Evans Photography. They can be viewed at:
www.evanscreativity.com
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The password is Aiden (yes they spelled his name wrong - it should be spelled with an AN not EN)

Thank you again to everyone for all the love, support, thoughts and prayers!