Our greatest challenge yet...
When my daughter was born on a beautiful day in November, my husband and I were the happiest people in the world! We had a healthy and gorgeous baby girl who happened to have a harmless birthmark on her arm and parts of her back and chest that the doctor confirmed was harmless so we never thought twice about it.
At just under 3 months of age, Farrah became very sick and spiked a fever that required a trip to the emergency room. We imagined it wasn't a big deal and figured they would prescribe us some Tylenol to lower the fever and send us on our way... You can imagine our surprise when they admitted us and told us we would be in there for a week or more. As it turned out she was sick with not only a common childhood illness known as RSV, but she was also battling a urinary tract infection. We found out later that she was suffering from a condition called vesticoureteal urinary reflux. In simple terms, her bladder was refluxing her urine back into her kidneys and causing infections. We were told it was something she would grow out of but would need preventative antibiotics every day for the first two years of her life and then we would have to run tests to see if she outgrew it or if she would need to have surgery to correct the problem. To our delight, she outgrew it by the time she was two and we were able to take her off of antibiotics!
At around 18 months of age, I noticed that as she would be running around playing, Farrah's ankle would give out on her and cause her to fall. It concerned me but when I asked people around me, I was assured that it was a first mothers paranoia and that I needed to relax because it was perfectly normal for toddlers who are still perfecting the art of walking. I made a mental note and decided to file it away in my mind and not worry about it. A couple of weeks later, she was running around playing when I noticed her ankle give out, but this time, when she tried to get up, it was as if her legs were numb and she wasn't able to put herself back in a standing position. I immediately called my mom who rushed over to my house, but by the time she got here Farrah had regained feeling in her legs and was up and running again. I decided to call her pediatrician and went to see him that day. He said it could be normal, but wanted to get an MRI of her back and x-ray's of her legs to make sure everything was forming as it should be. His fear was that her birthmark was pressing up against her spine. It was at this point that the doctor explained that her birthmark was known as a hemangioma. Its basically a benign tumor that is formed from extra blood vessels developing in her arm. We could see vessels on the surface but inside of her arm, the hemangioma could grow deeper than what we could see. The MRI would show us any pressure on her spine caused by the hemangioma.
We took her for the x-rays and were told that her legs were forming perfectly well. So we went off to the MRI room. They had to put her under anesthesia so she would be still through the tests, but we were told the tests would only take an hour and a half. What should have been only and hour and a half ended up taking 3 hours. After a few days of waiting we were able to see the pediatrician and get the results. Her doctor explained that Farrah has a tiny little cyst in her spinal cord.We were assured that it was completely normal and most people live their whole life without even knowing they have it. Her ankle was probably giving out because the cyst was pressing against a nerve and she would grow out of it in no time. It was suggested that we take her back for an MRI every 6 months for a few years to monitor it. I was referred to a neurologist who agreed with the pediatrician and wanted us to monitor just as a precaution.
I spoke to Peter about it and we both decided since it was so minor, we didn't want to have to put her under anesthesia so many times and unless she had new symptoms we would leave it alone. Her pediatrician and neurologist made it clear that it was common and fairly harmless so why worry, right? WRONG! Although her leg stopped giving out on her by the time she turned 2, at around 2 1/2 years old, Farrah had been complaining of back pain about 1-2 times a month. It had been about a year since her last MRI so I noted the pain and brought it up at her 3 year check up. The PA at our pediatrician's office was immediately concerned. She questioned why we hadn't been keeping up with her 6 month MRI's and I told her we didn't feel it was a big deal. I explained how minor it had been explained. The PA made it clear that although she didn't want to alarm us, we needed to get another MRI as soon as possible. She explained to me that it may be growing and as it grows it can be causing nerve damage that may not be repairable. She even went as far as to say that she could just wake up one day and not be able to move a part of her body and never be able to get the movement back. The fact that she was having back pain was a major indicator that the cyst was growing. I made an appointment with her neurologist and started asking questions. I didn't understand why they made it seem so normal and safe to have the cyst. I never even thought twice or asked any questions before this point because of how calm and relaxed they acted about it. For the first time when I spoke to the neurologist I was given a name to her problem. She has a condition called syringomyelia. Her cyst goes from just below her shoulder blades to right above her belly button. I was infuriated. I was told it was tiny. When I questioned why it was explained this way, he told me it was because the cyst is very thin. Its only 2 millimeters thick and the thickness is what is concerning. Needless to say we had an MRI done right away.
Since they knew what to look for it went by much more quickly. She was only gone for about an hour and a half and the radiologist came in right away to give us the results. Her cyst had grown from 2 millimeters to 2.5 at the thickest point. Although it is a small amount of growth, given the amount of time and the simple fact that it was growing pointed to her most likely needing surgery on her spinal cord. She would need to avoid any contact sports and not play with anything that could cause her to fall and hurt her spine. This meant no roller skates, bikes, gymnastics, trampolines and so on...
Her neurologist advised us that he could do no more for her case and she would need to see a neurosurgeon. He also suggested that we see a genetics specialist as well as a dermatologist to see if there is any correlation between her hemangioma, the syringomyelia and her previous urinary tract issues. We had to see the neurosurgeon in El Paso in order for insurance to cover the appointment, but we would need to go to Austin to visit a Genetics Specialist and a Dermatologist.
The neurosurgeon at the local children's hospital went against everything the neurologist, pediatrician, PA, radiologist and nurses we had spoken to had said. He said the growth meant nothing and she was fine. We wouldn't need to monitor her and she could continue with any sports or activities she wished. This left us relieved but very bothered. Why would he go against everything we had been told by so many different people? But at the same time, this is his specialty, he would know more than they would, right?? We addressed our concerns with Farrah's pediatrician and they agreed that we would definitely need another opinion. Since the last MRI we have seen the Dermatologist as well as the genetics specialist and received no answers. Perhaps the most concerning aspect is that the complaints of back pain have increased exponentially since her last MRI. We go through phases where she complains almost every day and on Christmas Eve she took time out of playing with her cousins so she could lay down because she said her back was hurting. We have scheduled another MRI to check for further growth. As per the genetics specialist and dermatologist we will also need to check the birthmark to see how deep it goes underneath the skin. Since it is on her left side and is an issue with her veins, they fear it could affect her heart or her blood flow or vessels and valves. She has had an ECHO and an EKG and both have come out normal. Her next MRI will last for about 4 hours and from there we will take the results to the new neurosurgeon that we have been referred to at the Texas Children's Hospital in Houston. As you can imagine, we are eagerly awaiting our appointment.
Friday, February 24, 2012
Ok... Sooo... When I first started writing this blog I did it with the intention that I would be completely open and honest about whatever topic I chose to write about. Today I'm going to take on a topic that I've been avoiding for the past month and a half. As much as I'm forcing myself to write about this, I know that in the end, putting it out there will make me feel better and help to prepare me to move on.
It all began the first week of October. I had had a ROUGH week with Farrah. I was trying to sleep train her and she was just not having it. I was living off of almost no sleep and did not think I was going to be able to make it. After a few anger outbursts and mood swings, I realized my period was a little late. Before turning to a bottle of wine to ease my sleep loss pains, I decided to make sure I wasn't pregnant and got a digital test... I really had NO idea that I was in for the shock of my life.
As you can probably guess from here, the test came out positive. I figured I was about four and a half to five weeks along. My husband was SUPER happy and excited, but because of my week of struggling to sleep train Farrah and getting no sleep at all, I had a bit of a breakdown. It wasn't just that I was tired and having one baby was already proving to be a 24 hour near impossible job, but there were a lot of other reasons I had for being upset. I had just finished breast feeding, so I was just starting to feel like my body was my own again. I also had just lost all of the 50+ pounds I had gained with my previous pregnancy and was really dreading being big again. I had gone on a crazy diet and was hardly taking in any calories (see blog post: How I lost the baby weight and then some). The diet was SUPER unhealthy (effective, but unhealthy) and I felt like my body would not be able to handle it. I knew my body was on such a nutrient deficiency that having another baby would just make all of my teeth start to fall out.
After a day and a half of crying and kicking myself in the butt for getting pregnant again before my first child turned 1, I remembered something my mom always said, "If you can't change it, change the way you think about it". I decided this was going to be a good thing thing. It was meant to be. God's will. I did everything possible to make it a positive new chapter in my life. I went through every reason that I had for not being happy about the pregnancy and found a reason to make it a good thing. I started walking at the park religiously. I went EVERY day for an hour long walk to prevent gaining more than the recommended amount of pregnancy weight. My whole diet changed. I refused to eat anything that wasn't good for me and the baby, and I stocked up on salads and nutrient rich foods. I started mapping out where I would put things if it was a boy and I had to re-decorate my daughters room so that they could share it. I made a list of the items my daughter had worn out and I would need to save up for to get new for the coming addition. I started to take weekly pictures of my belly to get me more excited. I even went as far as figuring out my due so I could ask around to find out who would help me when I wouldn't be able to lift my older daughter while my husband was at work after the new baby came... Guess what... IT WORKED! I became ecstatic. I was more excited than I was for my daughter because when I found out I was going to have her, as happy as I was, I was also nervous. This time, I knew what to expect. She had shown me how amazing it is to have a baby and I knew that this was going to be a new addition that I would adore, no matter how hard it was on my body or how hard it was to have a one year old and a new born. My motto was even though having a baby was the most difficult job in the world, it was also the most rewarding. I created accounts on all of the mommy to be sites. I started rubbing cocoa butter on my belly to prepare it to get big again. I made my appointment with my OBGYN for the first sonogram. I signed up for prenatal health care benefits. This time I knew what to expect and I was finally thrilled.
I was in the start of my 7th week when I got a call from my childhood best friend. She called to tell me that she was expecting and we figured our due dates were only 10 days apart! I couldn't wait to go through a pregnancy with her. This was going to be so much fun and the excitement was just doubled.
Another week of pregnancy joy progressed when it happened. I started bleeding and rushed to the hospital where I found out I had a miscarriage. The timing couldn't have been worse as my husband was out of town on business and would not be returning until the evening of the following day. Thank God I had my family to help out while I was at the hospital and support me throughout the process. Having the sonogram taken at the hospital and knowing in my gut that the tech couldn't find a heartbeat was the single worst feeling I have ever had in my life. It's amazing how much you can bond with a baby in only three weeks time.
The day after I miscarried I could not wait to see my husband again. I was so devastated that I was on the verge of vomiting all day. When he finally got home and I was able to see that he was just as upset as I was I knew I wasn't alone or crazy for being so sad when it had only been three weeks.
By the second day after the miscarriage I went to my OB to find out what happened. He assured me that it was very common and 50% of all pregnancy's end in miscarriage and there was nothing I did wrong, nor was there anything I could have done to prevent it. I was able to see where the baby had been and found out I was correct in assuming I was almost 8 weeks along. He said we could wait one cycle and then try again.
I know that losing the baby was what was meant to be. I know that it happened for a reason. I know that it could have been a lot worse. I know that something could have been very wrong with the baby and the loss was likely a blessing in disguise, but none of these things makes it hurt less. They help to mask the pain, but they don't take it away. I feel guilty for being so upset when I first found out I was pregnant. I feel like I cursed myself. I know, I know, its not my fault, but that twinge of guilt still plagues me from time to time. I should have been happy and thanked God from the start. I shouldn't have said so many times that it better be another girl because I want Farrah to have a sister. I should have just been happy that I was going to be a momma again.
I have spent the past few weeks trying to not think about what happened. I do a pretty good job of it too. When the topic gets brought up I try to make it a joke and laugh about it because it is easier than facing what happened. I break down every time I open Facebook and see an update from my childhood friend about her pregnancy. I know that every sonogram and baby bump picture I see is where I would have been if I had not lost the baby. Don't get me wrong. I am beyond happy for her, but it kills me to see it.
I have been trying to run from what happened and pretend that period of my life didn't happen for the past few weeks and I know that by doing that I will only make things worse for myself. I am going to have to face what happened so that I can move on from it. After suffering such a great loss I realized that I would love nothing more than to have another baby. At the end of this week, my husband and I are going to start trying again. I am terrified that we are going to have a hard time getting pregnant, or that we are going to have another miscarriage, but I cant live my life in fear and I have to pick up the pieces and move on. I will never forget the baby that we lost. I will likely never fully heal from it, but I have learned a lot in this whole situation. I learned a lot about myself and a lot about the amazing man I married.
I hope to be updating my blog in a few weeks letting everyone know that I am expecting again and asking for prayers that everything will work out. Its not a matter of if, its a matter of when.
Wish us luck!!!
Saturday, September 17, 2011
I never thought I would be sitting on my couch and posting a blog. Partly because I just never imagined that I would have something substantial to talk about. That paired with the fact that I never stick to anything I do always turned me off from blogging. Let me start off by doing what I do love the do the most and telling you a little bit about myself and what brings me here today.
In November of 2010 my prayers were finally answered and my husband and I were blessed with a baby girl. After having her, I decided that I could not bare to put her in daycare so I quit my job and am now a full time stay at home mom. While having a baby is most definately a handful, I have found that staying home has opened the door for me to start taking up hobbies that I have always had an interest in but have never had the time to do.
About a week ago I decided that I want to get into digital photography and start really learning how to take amazing pictures. I never had motivation to stick to anything else, but since I had my daughter I realized that I do not have enough quality pictures of her and I would like to change that. My hopes are that it will eventually lead me to a potential business venture.
Another hobby I have that I would like to share is my passion for cooking. There is no better feeling than to put together a meal and watch your family come together at the table enjoy it. I like to think that I am on my way to becoming a fabulous cook and would love nothing more than to document some of the meals I experiment with along with some of my favorite classic recipes. As a side note to this, about two years ago, I decided that I wanted to put together a celebrity name based cook book with meals like the "Christina Applecake" and "John Besushi". I know what you are thinking... That is completely retarded and I will never do it, but the more I cook and document what I do the more material I feel like I will have to one day put together that book. Its ok, judge now, but in 20 years when this has made me millions we will see who the retarded one is!
I plan to use this as an outlet to post pictures and document my new journey. I don't want to limit this blog to just photography and cooking. I really want to add in all kinds of things that will really show who I am. You may log in one day and find a book review, or I may just go off with a story I need to share about being home with my daughter or challenges that I am facing. I want to try my best to keep this blog very positive and fun, but my cousin who is also my very best friend that I love and adore has pointed out that I sometimes sensor myself to please other people, and I refuse to do that here. I only plan on sharing this blog with my closest friends and family members, but that being said, I plan on being as blunt and honest as you all know me to be.
I hope you all enjoy my blog and come back to visit often!