Out of Left Field

Two weeks ago Matthew had a MRI of his head to rule out (or in) mild cerebral palsy as the cause of his gross motor delay as well as several other issues. Nobody was expecting what the images showed. It turns out Matthew has what is called a Chiari I malformation. Essentially his cerebellum extends below the base of his skull. Many people have this and are completely asymptomatic. Others however, have severe issues related to this condition. Unfortunately it looks like Matthew falls into the latter category.  His excessive drool, low tone in his mouth and face, and choking on thin liquids are all signs that his Chiari malformation is causing issues.  His gross motor delay and spasticity in his legs may be caused by a related condition called Syringomyelia (fluid filled cysts along the spine) and/or a tethered spinal cord. He will be having a complete spinal MRI in the coming weeks to check for those related conditions.

After spending some time researching this condition and finding a Facebook group (because there are Facebook groups for everything) I found a pediatric neurosurgeon in our area who specializes in this condition. Thankfully his pediatrician is able to write us a referral to this doctor, as she has worked with her before.  I have already emailed the neurosurgeon asking what additional images she would like to have completed prior to his initial appointment. She was extremely quick to respond so now it is a matter of getting the MRI scheduled.

So what does this mean for Matthew? It may be as simple as watch and wait while limiting certain activities. It may be as complex as brain and spinal surgery to prevent further neurologic damage. The truth is, at this point we just don’t know. Someone asked if he was in pain. Honestly, I don’t know. He could very well be living with chronic pain, but because it is normal for him, he doesn’t complain.

Before his MRI, my biggest fear was it would show an inoperable, malignant brain tumor. This was my second biggest fear. Something that may not kill him, but will make his life even more challenging. There is no cure for this. Surgery will only prevent further damage. It may not even alleviate current symptoms. And no amount of Google searching could find a connection between food allergies and a Chiari Malformation. Trust me. I tried.

I don’t know much yet. We need to wait until the MRI of his spine is completed and we meet with the pediatric neurosurgeon. I do know that my son is the strongest, most stubborn child I have ever met. He has already fought through several challenges in his short life, and he will fight through this one. I just wish he didn’t have to. 

Long Term Consequences (Of Lives started too soon)

“They’re doing just fine.” It is something I have heard numerous times in the past 4 years and something I really wish people would stop saying. The fact is, while it may appear my children are doing just fine, they are not. I stated a long time ago that we wouldn’t know the full effect of prematurity until the boys get older. In my heart I knew I wouldn’t be able to breathe easy until both boys were in elementary school. We are slowly starting to see signs that both Jayden and Matthew did not escape their rocky starts to life unscathed. Each seem to have some lasting, possibly long term consequences of their lives being started too soon.

Jayden puked for the first 18 months of his life. He received both feeding and speech therapy through early intervention and “graduated” at about 19 months. From 19 months to 3.25 years I fought to get him qualified once again for speech services. Finally last November the speech therapist through Kaiser told me “yes, he is moderately delayed and does qualify for services”   and I cried. Not because I was upset he was delayed, but because someone finally heard my concerns and my son would finally get the help he needs. Currently he is receiving speech therapy every other week until a spot opens up for weekly sessions. In the spring I brought him back to early intervention to see if he would also qualify for speech through them. They looked at our history of evaluations and services and one woman proclaimed “wow, you have been asking for help for years”. I wanted to scream. I told her “I have been banging at your door for 2 years begging you to help my child. Only to be told ‘he is delayed, but 20%, not 25%. So we can’t help you’”. Given the evaluations from his current speech therapist as well as the results from their own assessments, he was finally qualified and will start receiving speech during preschool this fall. He has so many speech sound errors that when combined his intelligibility to an unknown listening is low.

In addition to the articulation disorder, Jayden’s preschool brought to our attention some sensory issues they are noticing with him. Specifically chewing/putting everything in his mouth, constantly touching things/people, He is always taking his shoes and socks off, HATES his hair/head being touched (although we are making progress with hair washing), and has difficulty sitting still even for a few minutes. I have long noticed some of the behaviors they mentioned and brought them up at his last EI intervention in March 2015. They said he did show signs of sensory issues, but again, not enough to qualify. Now that he is over the age of 3, his sensory issues must have an impact on his ability to access the learning environment, which according to Child Find, they do not. So while his IEP will have sensory accommodations, he will not receive occupational therapy.   And while I believe there are some sensory issues at hand, part of me has a hard time sorting those behaviors from “typical” 4 year old boy behaviors. Where does the 4 year old boy end and the sensory issues take over?

Matthew has a whole other set of issues that are both a result of his prematurity and also mostly likely an unfortunate mash up of my husband and I’s genetic material. His food (peanuts, lentils, and black beans) and environmental allergies are sadly a result of his DNA of which he would most likely have even if he had been born on time.

With regards to his prematurity, Matthew has some gross motor delays is pointing to a mild cerebral palsy diagnosis. As the months zoomed by and he still wasn’t making much progress on the walking front, I called and scheduled an early intervention evaluation for him. His pediatrician wasn’t concerned but that mom voice inside of me was starting to get louder. I have been concerned about stiffness in his legs since he was about 6 months old but have consistently been dismissed. He was found to be significantly delayed in his gross motor skills by Child Find and we were assigned a physical therapist who meets at our house once a week. Within 10 minutes of our first session she was able to confirm my suspicions about the tightness in his legs, specifically his left. She also commented on how his gait is off when he does walk. I had mentioned that his left leg seemed to swing spastically around when he was pushing something (the only time he would walk at the time). When she asked about his birth history and his APGAR scores (1 at one minute 6 at 5 minutes) she asked if I knew that those were poor numbers. I looked at her and said “of course I do. Why do you think I am concerned about his movement?” She also asked if I knew anything about cerebral palsy.   After a few months his physical therapist grew concerned about his oral motor skills and excessive drooling. She suggested we have an occupational and speech therapist evaluate him while he is still under the part C umbrella. The occupational therapist recommended once a month sessions while the speech therapist will be coming once a week. Because we have added services instead of removing them, I contacted his pediatrician and asked whether we should pursue a formal cerebral palsy diagnosis. My concern is that after he turns 3, without a diagnosis, it may be much harder for him to continue to receive services under part B.  She was in agreement and we are now waiting for an appointment with a pediatric neurologist.

There are times when I find myself wondering what life would have been like had the boys been born on time. Would they have the struggles they have? Would I have to know terms like “age inappropriate sound errors” and “spastic gait”? At times if feels like the weight of our world is too heavy to carry alone. Yet it becomes infinitely heavier when family and friends make comments like “they’re doing just fine” or “it could be worse”.  It makes parents like me feel even more isolated and alone.  Of course I know it could be worse. Jayden was born at 31.5 weeks gestation. We are extremely lucky that speech and sensory issues are all we are dealing with. Matthew, while only being 5.5 weeks early, was born “floppy, lifeless, and blue”. If we are in fact dealing with cerebral palsy, it is a mild form that doesn’t seem to affect cognitive or fine motor skills. I am acutely aware it could be a whole lot worse.  Our reality however, is that they are not “doing just fine”. I have fought to get them the services they need and they have fought so very hard to get where they are today. They still have a ways to go though. So the next time a parent of premature infant opens up to you with their concerns, do not dismiss them with comments like “they’re doing just fine” or “it could be worse”. Listen to them. Ask questions like “what specifically makes you think there is an issue?” and “how can I help you ?” and realize just because the child is out of the hospital and appears to be doing well, looks can be deceiving. Understand it may take years to see the long term consequences of their lives being started too soon. 

My Son is Doc McStuffins for Halloween and it Means Nothing…and Everything

Last week I took my 3 year old son to pick out a Halloween costume. After looking at all of the costumes he seemed to settle on Spiderman. As we walked to pay, he spotted a Doc McStuffins costume and insisted he wanted to be that instead. I pulled it out of the bag and tried it on him and the biggest smile appeared. He then refused to take it off. I asked him if he wanted to be a doctor and if so, we could go look at the other doctor costumes and he said “No, I Doc McStuffins”. So after putting the headband on him (because the outfit isn’t complete without the headband apparently) we paid for the costume and went home.

I posted a photo of him in his costume and a few friends commented on how great it was that I was allowing him to be himself and not forcing him to conform to society’s expectations for boy costumes. While I understand completely where the comments are coming from, it got me thinking: If he was a girl and chose to go as Spiderman, would it be such a big deal? I have read so many articles about how unfair the Halloween market is for little girls. The boys have so many professions to choose from but girls have few and the few overly sexualize little girls. But the reality is, we spend so much time telling little girls they can be anything and do anything boys can do -which they can- and no one makes assumptions about their future selves. But when little boys choose to do something that is traditionally seen as feminine society starts questioning their sexuality and gender identity. Which is ridiculous at best and offensive and inappropriate at worst because he is 3. He is choosing to be Doc McStuffins on a holiday that allows everyone to transform into something or someone else. His costume choice implies nothing of his future self.

Had I told my son that he couldn’t get the Doc McStuffins costume because it was a “girl” costume, other than making me vomit for say it, it wouldn’t have made a difference. He has no idea what that means. We have never gender labeled toys or activities and he has never heard “no you can’t play with that, it is a girl toy” from either myself or his dad. He has a toy kitchen, a baby doll, and doll house along with a million cars, trucks, sports equipment, and trains (seriously, he has too many toys!).

While I am completely fine allowing my son to wear a typically female costume this Halloween, I am still filled with anxiety because of it. I have seen how some people react to similar things and it makes me afraid for my son. He has never met a person he doesn’t like and calls everyone his friend. His heart is full of love for everyone and I don’t want to see it get broken by the cruelty of others. But these are my fears, not his. He has never witnessed such cruelty. All he knows is that his costume makes him feel great and his already strong confidence is lifted even higher while wearing it…and that means everything.  

"Mommy, Where Heaven at?"

        A few weeks ago my family and I were at Olive Garden celebrating what would have been my father’s 65^th birthday. My 3 year old was excited to celebrate “Bampa Gim’s birfday”. When we arrived, he was confused as to why Grandpa Jim wasn’t there. (Let us not forget that my father died 7 years before my son was born). I explained once again that Grandpa Jim was in Heaven, so we have to celebrate his birthday without him. While still confused, he seemed to accept it and moved on. Except to tell everyone he saw it was “Bampa Gim’s Birfday”. As we were packing up to leave, he once again asked where Grandpa Jim was. I told him he was in Heaven, to which my son cocked his head to the side and replied with a smile “Go see him?!” I explained we couldn’t go see him because he was in Heaven. “But, why Mommy, why?!” was his response. “Because when people go to Heaven, we can’t see them anymore”. He paused for a moment, thinking and with the innocence of a child he hit me with   “Mommy, where Heaven at?” Thankfully he didn’t notice my lack of answer and like all three year olds, he was easily distracted by something shiny. Because I didn’t have an answer. Because I didn’t know where heaven was at. It is a question I have been asking since the day my father suddenly and unexpectedly died 10 years ago and one that was renewed when my mother passed away 3 years later.

        Last week Stephen Hawking released new information regarding black holes. He hypothesizes that black holes are not bottomless pits in which all matter is destroyed. Through his voice synthesizer he stated “black holes might also be passages to other universes – but with a caveat. Anyone who enters one wouldn’t be able to come back to our universe” (ABC News). I believe it is possible then that black holes are actually passage ways to Heaven. That our souls are not destroyed upon death, but in fact travel through space and time, and with this new information, black holes serve as the doorways to Heaven.  

        I have found myself thinking a lot about my son’s question the past few weeks. Trying to come up with an answer that will satisfy his curiosity when he decides to ask me again. Every night when I put my boys to bed, I tell them I love them to the edge of the universe and back. When my son decides to ask me again “Mommy, where Heaven at?” I will look him in the eyes and tell him, “Heaven is on the other side of the edge of the universe. Black holes are just a short cut to the edge”.

Baby Boy Born Blue

It has taken me a while to write this post. Nearly 9 months to be exact. Partly because being a mom of 2 is a lot more time consuming than being a mom of one. Mostly it is because it deals with trauma that is still very real to me, despite how I act on the outside. 

It was Happening Again
I thought I had done everything right. I lost weight, Matthew was conceived without the aid of fertility drugs. This was my second pregnancy and I was being watched carefully by a team of doctors. By all accounts, my risks for pre-eclampsia were lower than they were with Jayden. Starting around 30 weeks I started experiencing blood pressure fluctuations. I spent a lot of time going back and forth between the doctor’s office and labor and delivery to be monitored. Each time they told me I was fine. I knew they thought I was overreacting because of my experiences with my first pregnancy. They should have listened to me. They should have done something. Perhaps if they did, my sweet little boy would not have been born blue. 
I kept asking for steroids for his lungs. I knew in my heart he would not make it to 39 weeks. They told me he was fine and he would indeed make it to term. I should have pushed harder. My MFM doctor said he would have a low threshold for giving me the steroids given my history and we would discuss it at my next appointment. Unfortunately he experienced a family emergency and was unable to be at my appointment. The doctor who covered for him did not have the same threshold. Therefore he did not receive steroids to speed up the development of his lungs. 
On July 18th, I went back to labor and delivery for a reoccurring headache and high blood pressure.  I was 34 weeks and 2 days. I was monitored and sent home on modified bedrest. Over the weekend my headache got worse and so did my blood pressure. By Monday morning I was in tears from the pain.  I called my doctor's office and they told me to get there as soon as I could. After finding a sitter, I left for the appointment. 
All Hell Breaks Loose
At my appointment I was quickly taken back for a blood pressure check and a non-stress test. A short while later they informed me I was going to be sent to labor and delivery for additional monitoring. Once there, my blood pressure was still high and rising. The doctor came in and informed me that the criteria for diagnosing severe preeclampsia had changed and that despite not having protein in my urine, my increasing blood pressure combined with my horrific headache was enough to make the diagnosis and I would be delivering my child that night. At that point I asked when I would be given the steroids. She informed me they no longer give steroids past 34 weeks. I was 34 weeks and 6 days. My heart shattered. I know from experience how important those steroids are. I begged for them for weeks. And now they were telling me it was too late, but he would be fine. He was far enough along and that his lungs would be fine. They couldn't have been more wrong. To say I was angry is an understatement. I am still angry.  I tried to remain calm when relaying this information to my husband who was still at work. The doctors "graciously" gave me enough time to line up a night sitter so my husband could attend the birth of our second son.

3 Hours shy of 35 weeks
I asked to speak with a NICU staff member before my c-section. I was informed that since he would be born a few hours shy of 35 weeks, he would automatically be taken to the NICU for observation, but they were expecting he would be back with me quickly. I learned later that the nurses were even discussing how to forge the time so that he could be given the chance to prove himself with me in my postpartum room. None of them were expecting the complications that were about to arise. 
Go Time
My husband finally arrived in time to gown up and wait while they prepped me for surgery. Thankfully the anesthesiologist inserted the spinal on the first try. I was then laid back on the operating table and waited. My legs became numb quickly but when the doctor tested to see if my abdomen was numb, I jumped. It was not. I started to panic. I don't even want to know what my blood pressure was at that point. The anesthesiologist said he would wait 5 more minutes to see if it took effect, otherwise he would put me under general. 5 minutes later I still wasn't numb and the last thing I remember is the mask going over my face. 
Baby Boy Born Blue 
I woke up in recovery with my husband sitting next to me. I immediately asked him how our baby was. I was told that Matthew Walter arrived at 9:19 pm but there were complications and he was intubated. It was if I had been sucker punched. I didn't understand. Before going into surgery, they were talking about him being able to be in my room after recovery. How the hell did this happen? The neonatologist informed me that it took a lot longer to get Matthew out than they expected and because of that he received too much anesthesia and combined with his prematurity, he wasn't breathing on his own. Upon delivery he was blue and floppy and his one minute APGAR was 1. They had to begin chest compressions because his heart rate was very low. He responded to the intubation and compressions and his 5 minute APGAR was 6. He was being transferred to the NICU. The place I worked so hard to keep him from every having to go. 
My Heart Aches
It has been 9 months since Matthew entered this world. I worked so hard to get him to term, but ultimately my body failed once again. After battling pre-eclampsia twice and post-partum preeclampsia this last pregnancy, I was told I should be done having children. That my chances of having Pre-E again were 100% and my survival was not guaranteed. So if I don't comment on the photo of you holding your newborn a few minutes after being born, please don't think I am anything but happy for you. If when you are talking about your birth experience and you see pain behind my smile, do not think I am anything but happy for you. The pain stems from sadness and guilt over not being able to carry my babies to term. The photos I see in my news feed are beautiful, but my heart aches when seeing them. The first photos I have of my boys are of them hooked to machines to finish doing what I failed to do. It is my hope that one day I will be able to make peace with the past. To quote my favorite TV show The West Wing “The goal is to be able to remember the past without reliving it”.  In the meantime, I will continue to hold my boys tightly and love them fiercely to the edge of the universe and back. 

Matthew Walter Sommer 7.21.2014 5 lbs 17.75 inches

Matthew Homecoming Day 8/4/2014

Matthew 6 months old February 2015

Combining Blogs because 2 is much harder than one :)

I have decided to combine Jayden's blog and the pittiful attempt at a blog for Matthew into one. Here are the 2 entries from Matt's blog. Sorry Matthew, your blog fell victim to the curse of the second child.

1/22/2014
Approximately 8 weeks ago I wrote a blog entry about how my 20's were not just hard, but heartbreaking. I am pretty sure God was listening. Because later that week, unbeknownst to me, Jay and I conceived our second child - without the aide of fertility drugs!

I am still in shock. I honestly thought my cycle was being weird because of the holidays and because I have been training hard for a half marathon. Since having my son, it has been so out of whack, I really didn't give it much thought until after Christmas. Then I joked with my husband that I needed to test.  Seeing as our son was conceived after 4 years of trying, 4 failed IUI's and finally a successful round of IVF, my being pregnant was not the first thing that came to mind. We were still in Chicago at his Mom's house. I had wanted to wait to test until we got home, but we were snowed in so I thought, hey why not, at least I won't have to worry about it another day and I can resume training. To my BIG surprise, the test was positive. Very positive. I had to look at the box again to make sure I wasn't confusing the "pregnant" line with the control line since it showed up almost immediately. I told Jay to come look. He knew right away it was positive because of the look on my face. The pregnancy was confirmed by ultrasound and a blood test a week later. While some people have said we shouldn't have announced it so early, my thinking is this child is a gift. For however long I am allowed to have this gift, I am going to celebrate it.  

Everything about this pregnancy is different. From how this child was conceived to how my body is handling it and everything in between. With Jayden, it started the month before his and his twin's embryos were transferred into me. There were so many ultrasounds. So many shots. So many hormones. Then there was the two week wait. For anyone who is trying to conceive and going through fertility issues, this is the longest two weeks of your life that can happen over and over and over again. Usually leaving you devastated because your period starts. With this child, there was no two week wait. There were no ultrasounds, shots, or hormones (except for the ones my body is producing rapidly). We never expected this to happen due to our form of infertility, but it was always in the back of our minds, the hope that we would be the exception.

 I am trying desperately not to be afraid. I am trying to enjoy this pregnancy as much as I can, because it will most likely be my last. But the ending to my last pregnancy weighs heavily on my mind. I have a 40% chance of having another preemie and I do not think my heart can handle that again. I am trying not to focus on it. I know I will be monitored even more closely this time around.  I also know that I have done everything I can to reduce my chances of pre-eclampsia. I have lost 70 pounds since having my son and my lifestyle is so different. I know that pre-e is more likely to occur in first time pregnancies as well as pregnancies that are conceived via IVF. Neither of which this one is. But my mind is still filled with the images of my child struggling to live his first few weeks of life. I am choosing to believe that it won't happen again. You see, I am 30 now. All the heartbreaking stuff was in my 20's. Yes, the second time around will be amazingly different.


4/1/2014
My oldest child defied so many odds. That's a fact and this baby boy is no different. He defied the odds by being conceived in the first place. At 10 weeks I was given a 50% chance of miscarriage due to a subchorionic hemorrhage and he has proven he wants to be here.  There were a few weeks where I could barely eat anything and if I did I couldn't keep it down and he continued to grow despite my increasing weight loss. So yesterday when we were told there is a very small, but still possible chance our son could have trisomy 18, otherwise known as Edward's syndrome, I have to believe that he will defy that too.

I was nervous going into our 19 week ultrasound with the high risk (MFM) doctor. For 9 weeks I had been worried that the small tear in the placenta and subchorionic bleed was still there and if it was  what that meant for the remainder of the pregnancy.  I was worried about my risk for preeclampsia and having another preemie. I was worried that the medications I am on were affecting my son despite my primary care and OB nurse practioner telling me that while they are class C drugs, there is no evidence to suggest the have a negative affect on a growing fetus. I was not worried about my child having any chromosomal abnormalities. The ultra sound tech commented numerous times on how extremely active our son was. Something the doctors and techs during previous appointments would say too. When the MFM doctor came in, he started going over our ultrasound results. Apparently he was watching it in his office and taking notes. He told us his growth looks great and we are within a week of our due date. He also eased our fears telling us there is no longer any evidence of a tear or bleed. My placenta had healed. Then he pulled up the image of our son's brain. He pointed out a dark spot and told us it was something call a choroid plexus cyst. He explained that they occur in about 1-2% of all pregnancies and alone have absolutely no affect on brain development or intelligence. However, its presence can be a marker for trisomy 18. A fatal chromosomal disorder. He then pulled up an image of our son's heart. Because of scar tissue (on me, not him) and the fact that my son would not stay still very long, the image wasn't as clear as the doctor would have liked. He suggested a repeat ultrasound in a month to get a better look. He said from what he can see it appears to be fine, but he just can't be sure without a better look. He pointed out that without other markers for trisomy 18, provided the heart is fine, that our chances of our son having this condition are still very low. After talking to the lab to discuss my quad screening results, he put those odds at 1/820 without the cyst and with the cyst he said some doctors would lower those odds to 1/600, but he wasn't going to.

Jay and I both really liked this MFM doctor (as opposed to the one I saw with Jayden). He did an amazing job of explaining everything to us and reassuring us that at this point, he does not think our son has trisomy 18. He told us if we wanted to know for sure we could undergo an amnio, but at this point the risk of miscarriage from an amnio was higher (1/250) than the risk of our son having trisomy 18 (1/820).  I asked if we could wait until our next ultrasound when we are able to get a better look at the heart to decide. He said of course we could, but if the results would affect how we choose to proceed with the pregnancy, then the earlier the amnio is done, the easier it would be. Without explicitly saying it, what he was really asking was if the results came back positive, would we choose to terminate the pregnancy?

Before having children, before infertility and heartbreak, the answer to that question would have been unequivocally yes.  I wouldn't keep carrying a child who was going to die. I used this exact situation in so many pro-choice/pro-life debates during my teens and early 20's and I couldn't understand why my pro-life peers couldn't see the difference between this situation and terminating a pregnancy because a woman just doesn't want to be pregnant. But then I finally got pregnant with twins and I saw my children's heartbeats on a monitor. A few weeks later there was only one heartbeat and I silently grieved for the life that was lost, even though I was only 10 weeks pregnant. Being pregnant changed me. While I would never judge someone for terminating a pregnancy due to a fatal disease, I couldn't do it. I could not be the one to make the decision to stop the heart that is beating inside of me. If after our next ultrasound our doctor says he thinks we should have an amnio, we will. Jay and I are both the type of people who would want to know what, if any, challenges we might face. The results however, would not cause us to be the ones to terminate the pregnancy. We would leave that decision up to God.

The name we have chosen for our son means "Gift from God". And while the chances of him actually having trisomy 18 is very very small, it is still extremely terrifying for us. If he does it will be devestating. It will change us forever but it will not destroy or define us. But in my heart I know he is fine. I just don't believe that this child, who's mere existence in our lives has defied all odds and who's presence alone is truly a gift from God,  would be given to us to be born with wings. I choose to believe that he will be born perfectly healthy and on time. Because right now, the majority of the evidence and mother's intuition is telling me so. And with that, my son kicks me hard as if to say, "I whole heartedly agree!".

More?!?!?!?!

Ever since Jayden was around 6 months old, people - including strangers - have asked me if we are planning on having more children. It has become and increasingly popular question and one that for me isn't easy to answer. First of all, I don't really see how it is anyone's business whether Jay and I decide to have more children. For strangers, I know they are just curious and none of them know the struggles we have faced in even having one child. But to the people who DO know our history - the pain and heartache we have endured in the hopes of having  a family - please stop asking. It is a deeply personal question to which I do not have an answer. Is there a part of me who wants more children? Of course there is. But it isn't as simple as just having unprotected sex. We have 3 embryos frozen. The comment I get a lot after explaining that we would have to do IVF again if we wanted to have more kids is "well I know so and so who did IVF and then got pregnant naturally. It is like the pregnancy reset the body". That is great for so and so. For us and our form of infertility that is not likely to happen. Could it? Of course it could, but I am not holding my breath. Because of the risk a multiple pregnancy would create knowing my history with pre-eclampsia, we would only be able to transfer 1 embryo at a time. This lowers the chances of success considerably. 
If I were to get pregnant I have a 40% chance of having pre-e again. Because of how early Jayden was, I have a much higher chance of having another preemie. I do not know if my heart could handle that. Knowing what I know now, knowing how incredibly lucky we have been with Jayden and not having any significant long term consequences of his prematurity, I don't know if it is the right decision to bring another child into this world. 
I mentioned the other day that infertility isn't just a battle, it is a war. It is a brutal and unforgiving war that had left me heartbroken and shattered. The birth of my son has healed the wounds of this war. I do not know if I can handle another battle, let alone another war. For the first time in many many years I am truly and unbelievably happy. I never want to feel that way again. Willingly allowing myself to enter into war in my eyes, at this point in time, is madness. I never want Jayden to feel like he isn't enough. I don't want to miss my son's childhood because we are so desperate to have more children. And what happens if I do get pregnant? In my eyes, the worst case scenario is losing another child. But to my husband and my child, the worst case scenario is not just losing the child, but losing me. As a mother I would gladly give up my life so that my child could live, but what happens to the child I already have? What happens to the man that has loved me since we were 17? Before Jayden and in the depths of depression, I believed that no one would miss me if I was gone. I see how my child looks at me. I see the love in my husband's eyes and I know if I were gone their lives would never be the same. I am not trying to be conceded, but truthful about what could happen should we choose to have more kids.
Asking someone if they plan to have more children is a deeply personal question. It is a simple question but one that does not have a simple answer. If we choose to only have one child, why is it anyone's business? I am sure I will be looked down upon by others because I only have one. How hard could raising only one be? There is such a stigma associated with the title of "only child". People believe they are selfish and they think the world revolves around them. If Jayden is indeed an only child, he will continue to be raised to be a kind, caring, giving child in hopes that he will become a kind, caring, and giving young man who knows the true value of the people and things in his life. If Jayden is indeed an only child, I shouldn't have to give an explanation as to why. Just as I do not judge those who have several children, people should not judge me for only having one. Undoubtedly some will. I will have to work had at suppressing the rage that will begin to fill me. I will have to fight the urge to justify our choice to others because it isn't any of their business how many kids we choose to have and the reasons why.
A few months ago I was told by a daycare worker that I "Owe it to the world to have another child" because Jayden is such a beautiful, delightful, and intelligent child. I do not owe the world more children.  What I do owe the world is to raise the child I do have in such a way that he makes the world a better place. I owe it to my son to continue to be happy and healthy and to be alive to watch him change the world for the better, as he has already changed mine.