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Isaac Ayden Muir

Isaac Ayden and his family

12/21/2006-12/28/2006

When I went in to my first ultrasound appointment, my husband came with me. We were excited, this will be our 6th child and after 5 years we were ready for another infant in our home. At 15 weeks along, we could hopefully see the sex of our child too!

The technician started moving the wand across my abdomen and we were able to see beautiful legs, feet, and arms, and a little round belly and a perfect heartbeat. This is exciting! It's a boy! Wow! It'll be our second boy! All four girls will be happy about that!

Then she, (the technician), kept on going over what looked like the top of his body. She kept on repeating herself saying," Well I can't quite see the brain yet, his head is so low in the abdomen."

So she moved me in different positions and yet couldn't quite reach a great view of the development of his head, so she just said she'd reschedule us later, "Then maybe he'll have moved to view his head better."

Ok, so we leave with a few photos of his beautiful body of what she saw. Oh, and showing that he definitely is a boy!:)

The next morning I get a call from my OB and is told to come back in right then for another sonogram. So, not thinking anything is wrong, took my 10 year old daughter with me for company.

The technician started out the same but this time she just kept on saying she couldn't see the head, about 7 different times, so now I am wondering why she is an idiot at doing her job. They tell me to go over to the hospital to the perinatologist floor to have them look and "hopefully they'll see his head with their machine."

So my 10 year old daughter and I drive down the road to the nearby hospital. She looks at me and asks me if everything is alright with the baby with a worried expression on her face. "Yes, I am sure it's fine", wondering what they weren't telling me yet.

The perinatologist looked and then told me to look where she was pointing at and told me "This baby is not viable, it has no brain. If you go through the pregnancy and if it is born to term, it wont be able to live." She started telling me about the name of the defect Anencephaly, or something, I don't know it started sounding like blah..blah..blah.

My daughter right there by me was crying, I kept telling myself I had to stay together emotionally for her, and couldn't. I cried for a second, then saw it scared my daughter Sarah, even more, so I controlled myself and stopped.

I asked some questions about the safety of me and the safety of the baby. And then was told the best thing to do is get induced as soon as possible. I said that I needed to talk to my husband and then I'd let them know.

Then Sarah and I left. Me carrying a card from them and a box of tissue. Sarah holding onto me and trying to dry her eyes.

I made it to the car and then drove home in a fog, I don't remember the drive home other than it being quiet and me trying not to cry until getting home because I didn't want to get in an accident.

I got home and went to my bedroom and cried and couldn't believe what I was just told. I cried each time I thought of calling my husband and telling him. I thought it may be better to wait till he came home that night but no, he'd want to know now.

After the shock of finding out what anencephaly was and that my baby was diagnosed as that, we decided that God gave us this baby for a reason, which we may not know for awhile or ever, but we know everything happens for a reason.

We decided to call him Isaac Ayden Muir. The initials spelling I AM.

He is our special guy.

With faith in knowing he was going to live long enough for us to get to know him outside of the womb, we bought a carseat just for him to come home in. We didn't know how long he was to live for, but through meditating and prayers my husband and I knew Isaac would live to see his sisters and brother.

I previously told my doctor that I want to deliver c-section because I felt that would be the only way Isaac Ayden would survive his birth. She was a little concerned about doing a cesarean surgery since I had never had one before and so she would induce me first and see how that went, and then agreed to do surgery.

At the hospital, 42 weeks along, I get induced. After my water is broken with every contraction Isaacs heartbeat dramatically drops. So my doctor tells the NICU doctors to get ready, we're doing a c-section to get this baby out safely. After they discuss there disclaimer stuff and we tell them that we know what all anencephalic means and no we don't want them to intavate him once he’s born and etc., they then agreed to let me have a cesarean, and wheeled me and my husband away from our kids.

Isaac Ayden, baby with anencephaly

My husband has truly shown me through all this his strength and support. He watched the whole surgery, later telling me he didn't want to miss anything about his birth.

He was born not breathing but the doctor rubbed his chest lightly and he responded by taking in his first breathes of life out of the womb.

I was scared at first at what he was going to look like and if I could handle it, but looking at him swaddled in the blankets and in his daddy’s loving arms I don't think it would've mattered whatever he looked like I still fell in love with him, just as with my other children. He was 6lbs. 4oz. and 18 inches long. He was beautiful.

After finding out his palate wasn't shaped to be able to suck, and 12 hours later, he was hungry, we got the nurses to eventually put in a feeding tube and instruct us in that as well.

On the 23rd of December we left the hospital with our son in his brand new car seat, and drove home. That was a ride home I will never forget.

Our family didn't have much for Christmas that year, but the material things were not noticed, it was the most beautiful Christmas because of having our miracle baby home with us. Our little I AM.

He had a trace of oxygen on him at all times as well as the feeding tube. We would change his bandage every day with a clean one. We’d cover Vaseline on a clean gauze pad with sterile gloves and cover that by wrapping tape gauze all around to hold it in place and tape the sides to his ears and the back to his neck then put one of his little hats on.

One time he spit up some of the formula that I had just fed him in the tube, and it scared me. I did not want him to aspirate, so that’s when I realized why my milk had just "came in", I pumped and fed him and from then on he never spit up again. I knew that was a blessing from God.

He had a big seizure the morning of the day he left us, it was scary to me while he was seizing, since it was worse than the last one, I had a feeling this was the day and I kept on saying his name and telling him, "Not yet, please not yet!" I woke up dad and told him something was wrong, he checked his stats three times before we called the hospice nurse to tell her to come out.

When the loving hospice nurse came and checked him she looked at us with sympathy in her eyes and said, "He's leaving, you better call everyone you want, and start saying good-byes, now."

Isaac Ayden, baby with anencephaly

That was not the confirmation I wanted to hear. But knew that was what little guy was doing.

We took out his feeding tube and his oxygen, so he could really go when he wanted to. He stayed for 3 more hours with us. Right before he passed, he cried out, which he hadn't been able to do before, he made some other yells of joy and freedom, you could tell he was happy he no longer was constricted to the tubes. Then took one breath, turned and kissed his dad and then turned and gave me one last kiss and exhaled his spirit up to heaven.

My children received the best Christmas gift that year, they got their very own angel to watch over them forever and always.

I am grateful for the experience that we had, if I had been told the same diagnosis with Isaac Aydens little brother, I would do it all over again in a heart-beat.

 

Last updated March 3, 2008