01-27-11 / Scariest week yet…..
I have been waiting to sit and write for fear that the things I write might become twisted and tangled. I have spent most of this week in tears and scared to the point of childlike behavior. I haven’t been able to take care of myself, much less my son. After an amazing weekend filled with family, I was getting ready to start a load of laundry so Aaden and I could rise and shine Monday morning for work and school with clean clothes. Once I got him settled in with his cartoons I decided I should hit up the restroom before tackling the laundry. This is when my whirlwind of a new nightmare began, I noticed that I was bleeding; this might be too much information for some but my reality nonetheless. Experiencing something like this as a woman expecting a healthy baby is scary enough, when you’re expecting a baby burdened with something such as anencephaly it is beyond mortifying. Aaron was working and I was home with Aaden all by myself so I did what any 29-year-old scared girl would do, I called my mom. This was on a Sunday night, which just so happens to be one of my dad’s busier nights as a pastor, so Mom said she would get a message to Dad that she was heading to my house and she’d be here soon. I try to be a strong person, my mom says I’m not easy to help but I have to say I felt physical relief knowing she was coming. My mom can’t deliver babies, she can’t find the heart beat, she doesn’t have an ultrasound machine but there was comfort in knowing she was going to come sit with me and wait. Wait, wait, and wait. The story of our life!
As I was waiting to hear back from Mom, I sent a message out to our friends that I was supposed to meet for dinner; had to let them know that Aaden and I wouldn’t be making it. As I typed the text to them I began to really panic. What if this is it? What if he has passed away already and I am really in labor? What if we weren’t going to get the full 36 weeks with him? He doesn’t have a hat yet. He doesn’t have an outfit yet. He doesn’t even have a cemetery. Where will they take our baby once he’s born? I haven’t picked out his perfect resting place because I’ve been too selfish to just make myself do it. When I’m having a bad day I don’t feel up to it and when I’m having a good day I don’t want to ruin it by cemetery shopping. Will the nurses put one of those plain ugly newborn hats on him? I have looked at a million hats online and none of them seem right, since hats weren’t making any sense I hadn’t even entertained the thought of an outfit. Will the funeral home give me time to shop? I cannot bear the thought of burying my child in a stupid onesie; but will there be time to pick anything else out? I want my mom to make him a tiny quilt to be buried with but I haven’t found the “right time” to ask her to do it and now it might be too late. As all of these thoughts began haunting me I couldn’t help but cry. I try so hard not to cry in front of Aaden about all of this because it’s just so abstract that he simply doesn’t get it; I couldn’t resist this time and this time he noticed. He came up to me and said, “Why are you crying mommy? Are you scared?” I just smiled really big and said, “I’m crying because I love you so very much.” He literally laughed in my face and said, “Mommy, you’re so silly”, reason number 5 million that I love my boy. That was enough for him, he didn’t need to know exactly why I was crying; he just needed to know that I was ok. I started getting concerned messages from everyone that knew at that point and the tears would start back up; sometimes it’s simply overwhelming to realize how much our friends really love us. As I was corresponding with everyone I began sharing with Casey how scared I was and how I wasn’t ready for all of this. She is a photographer and quickly offered all of her tiny hats that she uses for newborn shoots, offered to find a cemetery and expressed that somehow our group of friends would get him the perfect outfit; there was a level of peace in that but I am his mommy, I feel I’ve let him down by not handling these things by now.
Mom finally got to the house and although I felt so much better, my mind just wouldn’t shut off. I don’t typically share what’s on my mind in person because I don’t like sobbing and more than likely once I start talking during these moments the sobbing is out of my hands. I think I just sat quietly, I don’t really remember. I do recall her saying that Mike and Sherry, they’re some of our adopted parents and consequently my kids adopted grandparents, were going to drive Dad to the house once church was out so he could be with us too. What wonderful people. This late at night and they’re packing up to drive Dad to Beaumont, not that it’s that far of a drive but I feel certain that isn’t how they planned to spend their Sunday night. These little acts of kindness mean the world to my family, I know many of you do not realize exactly how much it means; we thank you a million times over. They made it to Beaumont with Sonic in hand and we all enjoyed chatting while they ate, that alone helped turn my night around. Mom and Dad spent the night that night, I don’t think either of them changed out of their clothes just in case we had to fly to the hospital and they both slept on the couch; those are good parents.
The next morning, Monday, I got up right at 8:30 to call my nurse and newfound friend, Lanie, to fill her in on my night; of course she said to come on in. We made an appointment for 2:30 to see Dr. Sherman and we weren’t sure exactly how it would go. When we were first called back they told us to sit tight because they wanted to do an ultrasound, part of me was relieved to hear that we would get to see him and the other part of me started to feel anxious. I knew he was alive because he had been moving all morning but I was so afraid she might find something terribly wrong that would lead to an early delivery. Aaron and I started talking about what we would say if it was the same girl that had done our ultrasound on the 5th, the one that discovered his birth defect; we didn’t have the words quite worked out yet when we found that we had a different tech this time. In an attempt to make her a little bit more comfortable with us I practically shouted at her that he has anencephaly; sometimes I really wonder why I do the things I do. I just wanted her to know that we know that he is not a healthy baby; I was attempting to “break the ice” so we could hopefully have an open and somewhat friendly session with her. I think it worked, she thanked me for being so open about it and she shared that she has seen it several times in the past; see, my sudden outbursts aren’t always for nothing. She immediately found his heart and it was beating! That’s all I cared about for a split second but then I started questioning her; ultrasound techs do not like this by the way. I think their hands are somewhat tied on what they can and cannot say but there was one thing Aaron and I both noticed, his heart was beating, but it was beating very slowly. His rate is typically in the 140s and it was registering in the 70s, seeing this is a bad feeling for any parent. We quickly began to notice that it would speed up and slow down, it was ranging from the 70s to the 120s; any dummy would know that this is not a good thing. She felt comfortable enough telling us that her main concern was his irregular heart rate and I felt a small amount of peace that she only voiced one concern; although a major concern it was only one! We were placed in a room to wait for Dr. Sherman to come in and really discuss what was going on and hopefully answer some of the questions we had been wanting to ask her; while we were waiting, Lanie kept us company. We were able to talk with her about everything that was going on and gain some comfort from what she had to offer but as we were talking she was called away; in a situation like this, when your nurse is called away from your room all you can think is, “oh my, they’re all trying to come up with a way to tell us that our baby is almost gone”. Turns out, Dr. Sherman was suddenly very ill and her husband was coming to pick her up, we just had to return for our regular visit on Wednesday. Lanie gave us her cell phone number so we could call her anytime if something went wrong, I do love that girl. We left feeling pretty good about everything, even though his heart was beating irregularly, it was beating and he was moving and that’s all I cared about.
As the day progressed I started feeling a bit blah, I’m never sick so I was just writing it off to stress and lack of rest. Since Aaron had to go back to work, my parents took Aaden home with them so I could get some rest; they offered to stay another night but I honestly felt I would be just fine and this way they could sleep in their own bed instead of fully clothed on my couch. I was wrong again! Fever was setting in early in the evening and I was beginning to shake violently and could barely get up to use the restroom; I found the strength to get up around 1:00am for a potty break; I was bleeding again and it was far worse than before. I just sat and cried. All I kept thinking was that my baby is already doomed; I am going to lose my child; why can’t the remainder of my pregnancy just be uneventful and full of fun? Why do I have to worry about everything right now? Isn’t it unfair enough that our son will not survive on this earth that maybe we could be spared this additional stress? Again, I did what every grown woman does when she’s scared and alone, I called my parents. It was 1 in the morning so it took a few times to get them on the phone but I finally got through. Mom said she was back up rocking Aaden and hadn’t heard her phone ringing but she would get them all packed up and they’d head back to the house. I didn’t even have Tylenol in my house to take for my fever so my poor dad had to run into Walmart before they could leave for Beaumont. They finally arrived around 2:00, medicine in hand and a wide eyed child on the hip; bless his heart, he was ready for a day of activities after that little nap he got. First thing he said was that he wanted to lay with me so I turned my back to him, didn’t want to breathe in his face, and let him snuggle up to me and twirl my hair. I could literally feel his energy level rising, I knew we were in for a long night, he slept from about 8:00-2:00 and that’s all that kid needs. Dad gave me my medicine and they offered to put Cars on for him to watch so I could go lay in my bed and attempt to sleep. When Aaron got home around 5:30am he came in the room with Aaden, who was still awake, laid him next to me where he finally went back to sleep; that boy loves his mommy.
We woke up the next morning, I was feeling half dead so Aaron called Lanie for me to fill her in on the night before; she didn’t even make an appointment, she just said to get there as soon as possible. When you’re running high fever and haven’t had a shower, as soon as possible holds a totally different meaning. I managed to shower, without washing my hair, had no energy to put makeup on (anyone that knows me well can vouch for the fact that I don’t go many places without makeup and with dirty hair), and I proceeded to put clothes on that a blind person could tell didn’t match. This is the image you might find under “hot mess” in the dictionary. To top all of that off, Lanie asked that I wear a mask through the office to prevent blessing the other pregnant women with whatever plague I have encountered, which was later determined to be the flu. Let me say this, I do not like getting funny looks from people and walking in an office looking like that with tears streaming slowly down your cheeks and into your face mask will cause people to stare.
They placed us immediately in a room where the little heart beat girl comes in with her little heart beat machine to check for none other than the heart beat; which she could not find to save her life. Although I had already somewhat prepared myself for this due to the decrease in rate from our Monday visit companied with his lack of movement since Monday night, it still stung. I wanted to scream at her, “just go get Dr. Sherman, she’ll find it” but I refrained. She walked out and we were then informed that I needed to get dressed and head to ultrasound so they could attempt to find the heart beat, I put my non matching clothes on but I refused to bend down and put shoes back on so picture the previous hot mess, minus shoes walking back through the halls to the ultrasound room; not pretty. I slowly climbed up on the table somewhat holding my breath but it was almost immediate, there was his heart beat and it was stronger and faster than it was on Monday; I knew that girl just couldn’t find it! His rate was in the 150s and that made us feel so much better, not sure why he wasn’t moving but that was irrelevant because he was alive and I saw it with my own eyes. As we walked back to our room I began to wonder what those people in the waiting room must be thinking, I’m sure we’ve been discussed among spouses and I can only imagine the horrible things they’re thinking; not that I blame them, I would be the very same way. We were visibly unhappy and in pain, deep emotional pain; it was written all over our bodies, not just our faces, we looked completely beaten down.
Dr. Sherman finally came in and we were able to discuss everything with her. She went through some of the previous blood work I had done and explained that I do not metabolize folic acid the way I am supposed to. This means that for future pregnancies I will have to be on 4 times the normal dose of folic acid and if I understood her correctly, it’s a specific type of folic acid. This apparent mutation has a name that goes like this, methylenetetrahydrofolate, nice huh?! I have researched it and it blows my mind, I can’t seem to comprehend it all so I will just ask her about it again when we go back. I can tell you this; Aaden has never appeared to be more of a blessing than he does now. If my body does not metabolize folic acid and this is why Thomas will be born this way; Aaden is nothing short of a miracle. I did not take my prenatal vitamins with him the way I should have and the Good Lord knows I didn’t eat healthy but my boy is perfectly healthy and smarter than any other kid I know; he is our miracle. I guess by all medical standards Aaden should have been born with a neural tube defect of some sort but God chose to make him completely perfect, science can’t prove otherwise.
We also had the chance to speak with her concerning organ donation. We received bad news on that topic and I think we handled it better than we might have expected. I truly believe that seeing his heart rate so low and so irregular prepared me for them to say, his organs aren’t the quality required to sustain life in another baby; I was not expecting this whacky reasoning. Apparently in the state of Texas, these babies are not allowed to be organ donors due to the small amount of brain stem activity they are born with, sad but true. The law here seems to think that we would be “allowing” our child to die so that his organs could be redistributed. I don’t know if I should take offense to that or not but a small part of me does. If there were a small chance our son could survive and live a life full of quality, one where he enjoys the taste of food, takes in all the sounds around him, falls in love with certain colors for no reason other than he just loves them and like all other children touches everything within reach because he longs to know what it feels like; I would never consider “allowing him to die” and donating his organs. My son will never have that life and our state, which I love by the way, has decided to rob another child of the possibility of having such a life because of a dumb law. My interpretation of this is that the state of Texas feels we should insert a feeding tube and place our son on life support. My question for them is; until when? At what point have we not “allowed” our son to die so another can live? I don’t want my baby to die, but this outcome is what we have been handed; I would love nothing more than for another baby to live because of him. I think we feel a bit shortchanged to be honest.
When we first found out that Thomas had anencephaly I felt so angry that I was being forced to carry him for several more months knowing his fate. I was dreading each little part of it. After experiencing the week we have experienced I can say with full assurance that I am thankful for each day with him and I am not ready to let him go yet. I do not want this to end right now. Do I want the weight gain, nausea and occasional vomiting to end? Without a doubt! But I don’t want my time with my son to be over yet, I am most certainly not ready to say goodbye. I pray that God will grant us this small favor, I pray we get to have him until 36 weeks where he will be born alive and we can spend some time with him before he passes. I promise I will not take one bit of it for granted and to cherish each moment, I just don’t want it to end so soon.
My parents have been tending to Aaden since Monday, this can officially be recorded as my longest amount of time away from him and I am ready to have him back. We decided to pay him a visit and to check out some cemeteries closer to the Orange area, I don’t think either of us expected to find anything we liked but we feel obligated to see all of our options. Turns out, Dad found us the perfect cemetery! I know that sounds nuts but we knew instantly that it was where he was supposed to be. It is beautiful, everything is symmetrical and clean and the best part is that they have a baby land. He will be with other little babies under a beautiful statue of Jesus holding baby lambs; it’s amazingly perfect. I think my favorite part of today was watching Aaden climb up and down on the Jesus statue, we all know Jesus would have loved that so I tried not to stop him. At one point he climbed up there with his “instrument”, which is his harmonica, sat down right at the feet of the Jesus statue and started to play; it was sweet and hilarious all at the same time. I honestly felt we would stand and sob when we found where we would lay him, I didn’t. Aaron cried a bit but it wasn’t the way I pictured it; I think we both just found a little bit of peace there, it’s as close to perfect as I think we’re going to find. Nothing will ever be good enough for our little one but that place comes very close. I love it. Odd to say, but I love that cemetery; it will hold my son’s body forever and I will always love it. Today was the perfect ending to a perfectly crummy week.