I'm hoping to do a real update at some point soon. Hugs to anyone still following this blog ;-)
Sunday, December 20, 2015
Jack: 8 Months
I'm hoping to do a real update at some point soon. Hugs to anyone still following this blog ;-)
Friday, November 13, 2015
Jack: 7 Months
Well, things have been interesting around here.
I'm in therapy. Hubs is in therapy. We're both on anti-depressants. (Mine seem to be working a bit better than his.) We're also both in PT twice a week for our backs. My parents left last week and I've been cobbling together help from friends and family every day since. It has been hard for me to take care of Jack on my own because a couple weeks ago I pinched a nerve in my neck and twisted funny at the same time, knocking my top 8 vertebrae out of alignment. That was fun. Thanks to PT I'm definitely on the mend and can now hold Jack (and lift him in and out of his crib) so that's a huge improvement. Next week we're going down to just Nanny J in the mornings and all me in the afternoons through bedtime. Hopefully I'll be ok physically at that point. I'd be lying if I said I wasn't a little nervous. Luckily though, we have a lot of loving people in our lives that are willing and able to help if I say the word.
Mentally/emotionally it's been a roller coaster. I mentioned in a previous post that Hubs has been struggling with paternal postnatal depression, anxiety and OCD. It got really bad (and quite scary) for a while there. Turns out he had a bad reaction to the first med he tried so once he switched he got a bit better. Then we got some tough medical news about Jack (more about that below) and he really spiraled downhill again. That one lasted for a while. I don't have the energy to write about the hard times except to say that when it's hard it is REALLY REALLY hard, but luckily he seems to be coming out of the worst of it again now. Thank God. But during the brief respite of relief I think I was able to finally take a breath and focus a bit more on myself and it was then that I realized just how bad I was. I realized I've been fighting PPD (post partum depression) and I reached out and got some help. Through therapy I'm now discovering I've been depressed for a long time, starting probably 2 years into infertility and extending through losing Petey, grieving, all the difficulties that go along with being pregnant after loss, receiving the shocking news at the end of my pregnancy about Jack's dwarfism, and now adjusting to life not just as a new mom with a baby but as one with a baby with special needs. My therapist made a point to say that I have been through multiple traumas over the past few years. I never thought of it that way but she's right. I'm working on being okay.
As for Jack, he's doing awesome. He is such a sweet baby and really is the light of my life. The medical news I mentioned previously was two-fold: We happened to find out on the same day that 1) he'll need to have surgery soon to place ear tubes (it's scheduled for the day after Thanksgiving) and 2) his sleep study results came back and confirmed that not only does he have obstructive apnea (which we expected), but also central apnea which is the one we were hoping wouldn't be present. Unfortunately the episodes of central apnea were much more prevalent than the obstructive so it's unlikely he'll grow out of it (central = neurological). This past Monday we went to Boston Children's Hospital yet again (quickly becoming our new home away from home) and met with a pulmonologist and the head of the sleep clinic. Jack is now set up with oxygen at night which will hopefully help him breathe better and more consistently. Right now he is not in a C-PAP mask (likely because he is so little) but in three months we have our follow up appt to evaluate the effectiveness and have a repeat sleep study to see if he's receiving enough oxygen through just the nasal cannula. We haven't started the oxygen yet because we are still waiting for a part to come in but it is very weird to have respiratory equipment in his nursery now. I am not looking forward to having to try to wrangle him into this thing now every time he sleeps and honestly I'm going to be even MORE concerned about him at night now because I'll be worried he'll get the tubing wrapped around his neck :-(
As for the ear tubes: It's a routine surgery for lots of little kids so normally I wouldn't be concerned about it but he does need to go under anesthesia and kiddos with dwarfism often have complications with anesthesia. This will be his first experience with it so I'm not sure how it will go but I'm hoping for the best. (I'm trying not to think about it much honestly.)
I feel like I've been taking the news in stride but Hubs hasn't been able to do that. He is in much worse shape than me and with every additional thing he just feels overwhelmed and extremely negative. He's having pervasive catastrophic thoughts so when I told him that Jack's study came back as positive for obstructive and central apnea he can't see it as: "Ok, we'll meet with specialists and figure out what will help him breathe better at night", he sees it as: "Oh my god, there's another medical issue with our child and he could die in his sleep and since it's central apnea he will have neurological issues and likely has spinal compression too (since central apnea can be a marker for compression) so he'll have to have back surgery and he'll probably have complications with the anesthesia and and and..." I am sure it is exhausting. The anxiety reduces him to a paralyzed crying heap of a man who is stuck in his own head and unable to see his way out or gain perspective. It's hard. And it's hard on me too. I am learning mental illness is a scary and unpredictable beast. It's an ailment - like a broken arm for instance - for which you need treatment (therapy and meds) but unlike a broken arm, you can't SEE your progress. You can't see it heal in tangible ways. You don't know what will re-injure you. You don't know how much longer it will take to be able to be back to full strength again. It's tough. And I am already dreading the next "bad" news we get because I fully expect for him to spiral downward again. I just have to hope that he's learning tools in therapy, as I am, to be able to better handle the things that are thrown our way.
Our relationship, our marriage, is very different right now because he is very different right now. He's not himself. And I am different too. It's impossible not to be now that Jack is here. And I think it's also impossible not to be after the things we have been through. It reminds me of this quote:
I think we'll be okay though. We're working through it; in our own ways and together. It will be a long process though. In the meantime I'm taking one day at a time and enjoying my little guy as much as I possibly can. He is just amazing.
Sunday, October 18, 2015
Dwarfism Awareness Month
October is Dwarfism Awareness Month! Just as I have done previously with Infertility Awareness Week, I am using my Facebook feed to try to raise awareness about dwarfism by posting interesting info and links. I've gotten some good feedback so far, lots of interest and quite a few people thanking me saying they're learning a lot. That's exactly what I'm going for :-)
Below are the posts I have made thus far. I'll add to this periodically as I post more. If you'd like to also help raise awareness about dwarfism feel free to copy and paste any of the below info you like! Very few people know anything about dwarfism so the more awareness that can be raised, the better!
------------------------------------
October is awareness month for two causes that are near and dear to my heart: Pregnancy and Infant Loss Awareness, and Dwarfism Awareness. I'll be posting about both this month because neither are as well understood as they should be and my hope is that I may be able to provide you, my friends, with some information about them. [Hubs] and I never thought we'd have to say goodbye to our first child and we never thought our second would be born with Achondroplasia, the most common form of dwarfism. We miss our angel every day and we are thankful every day for the amazing son we hold in our arms. I hope you'll take a minute to read my posts this month!
Learn some facts about dwarfism!
Did you know that the majority of children born with dwarfism (80%) have average-sized parents? Dwarfism is caused by a spontaneous gene mutation at conception. What prompts a gene to change is not yet clearly understood. It is seemingly random and unpreventable, and can occur in any pregnancy. That means you too could one day have a child with dwarfism!
Did you know that there is over 200 different types of dwarfism? Jack's form is called Achondroplasia, which is the most common form. It is characterized by a large head, average sized trunk and shorter arms and legs (think: Peter Dinklage aka badass Tyrion Lannister from G.O.T.).
We are grateful to have a diagnosis as it helps us and Jack's doctors know what to expect and what to watch out for. Many babies with dwarfism won't have a diagnosis confirmed for many months, even years, and some never officially receive a diagnosis at all.
Most types of dwarfism have medical complications, some more severe than others. Some common ones associated with Achondroplasia (the type Jack has) are sleep apnea, hydrocephalus ("water on the brain"), spinal compression, chronic ear infections, and orthopedic issues. We are always on the lookout for signs of each of these problems and see specialists regularly. Now that Jack is 6 months old we are beginning to notice some of the expected delays in motor skill development due to his Achon. Most kiddos with Achon will experience motor delays with things like controlling the movements of the head, sitting up, crawling, and walking, but intellectual development is normal.
Did you know that the word “midget” is considered highly offensive to those with dwarfism? This dates back to "freak show" times when little people were only seen as here for others' entertainment and not as people in their own right. Acceptable words to use are: dwarf, little person, person with dwarfism, or short-statured. But most people with dwarfism just prefer to be called by their name rather than by their condition.
Please click on the below link to learn 5 things you should never say to a little person and to get a glimpse of what daily life is like for many short-statured individuals.
http://www.foxnews.com/health/
As the parent of a little person this is hard for me to read but it just reaffirms why we need dwarfism awareness.
https://lovebecxo.wordpress.
There is no single treatment for dwarfism and most people with this condition and their families do not feel it is something to be "fixed". Instead, individualized accommodations such as specialized furniture, stools, long grabbers/sticks, etc., are used by people with dwarfism throughout their lives. Individuals with short stature can do just about everything an average-height person can, sometimes just in a different way. Their height does not keep them from leading fulfilled lives, achieving higher levels of education, or accomplishing career and personal ambitions. Dwarfism is not a disease and though opinions vary within the little people community about whether dwarfism is a disability, it is a recognized condition under the Americans with Disabilities Act.
When [Hubs] and I found out at 36 weeks pregnant that our child had dwarfism we had no idea what to do or what to think. We knew almost nothing about dwarfism and didn't even know that we, as two average height people with no other little people (LPs) in our families, could even conceive a child with dwarfism! We were lucky to quickly find some LP groups on facebook and were welcomed by some wonderful people into this new family with open arms. We were offered all kinds of guidance, resources, and support for which we will be forever grateful. It was hard to wrap our brains around what was happening and that our child (and in fact our future) would be very different from what we had always pictured. One of the things that helped us come to terms with that is the following essay we were given called "Welcome to Holland":
http://www.our-kids.org/archives/Holland.html
Below are the posts I have made thus far. I'll add to this periodically as I post more. If you'd like to also help raise awareness about dwarfism feel free to copy and paste any of the below info you like! Very few people know anything about dwarfism so the more awareness that can be raised, the better!
------------------------------------
October is awareness month for two causes that are near and dear to my heart: Pregnancy and Infant Loss Awareness, and Dwarfism Awareness. I'll be posting about both this month because neither are as well understood as they should be and my hope is that I may be able to provide you, my friends, with some information about them. [Hubs] and I never thought we'd have to say goodbye to our first child and we never thought our second would be born with Achondroplasia, the most common form of dwarfism. We miss our angel every day and we are thankful every day for the amazing son we hold in our arms. I hope you'll take a minute to read my posts this month!
Learn some facts about dwarfism!
Did you know that the majority of children born with dwarfism (80%) have average-sized parents? Dwarfism is caused by a spontaneous gene mutation at conception. What prompts a gene to change is not yet clearly understood. It is seemingly random and unpreventable, and can occur in any pregnancy. That means you too could one day have a child with dwarfism!
Did you know that there is over 200 different types of dwarfism? Jack's form is called Achondroplasia, which is the most common form. It is characterized by a large head, average sized trunk and shorter arms and legs (think: Peter Dinklage aka badass Tyrion Lannister from G.O.T.).
We are grateful to have a diagnosis as it helps us and Jack's doctors know what to expect and what to watch out for. Many babies with dwarfism won't have a diagnosis confirmed for many months, even years, and some never officially receive a diagnosis at all.
Most types of dwarfism have medical complications, some more severe than others. Some common ones associated with Achondroplasia (the type Jack has) are sleep apnea, hydrocephalus ("water on the brain"), spinal compression, chronic ear infections, and orthopedic issues. We are always on the lookout for signs of each of these problems and see specialists regularly. Now that Jack is 6 months old we are beginning to notice some of the expected delays in motor skill development due to his Achon. Most kiddos with Achon will experience motor delays with things like controlling the movements of the head, sitting up, crawling, and walking, but intellectual development is normal.
Did you know that the word “midget” is considered highly offensive to those with dwarfism? This dates back to "freak show" times when little people were only seen as here for others' entertainment and not as people in their own right. Acceptable words to use are: dwarf, little person, person with dwarfism, or short-statured. But most people with dwarfism just prefer to be called by their name rather than by their condition.
Please click on the below link to learn 5 things you should never say to a little person and to get a glimpse of what daily life is like for many short-statured individuals.
http://www.foxnews.com/health/
As the parent of a little person this is hard for me to read but it just reaffirms why we need dwarfism awareness.
https://lovebecxo.wordpress.
There is no single treatment for dwarfism and most people with this condition and their families do not feel it is something to be "fixed". Instead, individualized accommodations such as specialized furniture, stools, long grabbers/sticks, etc., are used by people with dwarfism throughout their lives. Individuals with short stature can do just about everything an average-height person can, sometimes just in a different way. Their height does not keep them from leading fulfilled lives, achieving higher levels of education, or accomplishing career and personal ambitions. Dwarfism is not a disease and though opinions vary within the little people community about whether dwarfism is a disability, it is a recognized condition under the Americans with Disabilities Act.
When [Hubs] and I found out at 36 weeks pregnant that our child had dwarfism we had no idea what to do or what to think. We knew almost nothing about dwarfism and didn't even know that we, as two average height people with no other little people (LPs) in our families, could even conceive a child with dwarfism! We were lucky to quickly find some LP groups on facebook and were welcomed by some wonderful people into this new family with open arms. We were offered all kinds of guidance, resources, and support for which we will be forever grateful. It was hard to wrap our brains around what was happening and that our child (and in fact our future) would be very different from what we had always pictured. One of the things that helped us come to terms with that is the following essay we were given called "Welcome to Holland":
http://www.our-kids.org/archives/Holland.html
Thursday, October 15, 2015
6 Month Medical Update
I haven't posted much about Jack's medical issues so I figured I'd give an update. There has been a lot of activity:
I think that's all of it. We have seen a LOT of doctors in 6 months. His pediatrician, geneticist, nephrologist, and physical therapists are through the hospital here in NH but I've asked for referrals for specific doctors (otolaryngologist, audiologist, neurosurgeon, orthopedic surgeon) at Boston Children's Hospital based on recommendations from other parents of little people. It has been quite a juggling act to get the different hospitals and doctors to interact, share info, xrays, films, etc. In certain instances we've also reached out to the skeletal dysplasia experts who work out of Wilmington, DE for second (or third) opinions. Most doctors do not have experience treating little people (and many doctors have differing opinions just to make it MORE confusing) so we've had to make certain judgment calls as parents new to the world of dwarfism on whether or not we think a certain doctor knows what s/he's doing (and unfortunately, in certain cases, they don't seem to). I've had to be "That Person" who demands more in depth information and further testing and referrals to other doctors. But it's just the name of the game I guess. In addition, we've had issues with insurance because once I quit my job Jack and I went onto my husband's insurance which has been a gigantic pain in the ass. In the last 6 months I have had to learn a LOT of new things not just about dwarfism, but about how hospitals operate, interacting with medical staff, tricks to get what you want, how to advocate for yourself, navigating insurance red-tape...you name it. This is my full time job. Now I'm amused that I contemplated going to back to work after maternity leave.
Jack has been a champ through it all. He really is awesome. Here he is during last week's sleep study:
The potential surgeries (and even just the MRI) are scary for us because complications with anesthesia are common for little people. I'm trying not to think about that right now. These days I don't think much beyond the next appointment. If I think too much I might have a hard time moving forward. So instead, we are just plugging along. This is now my reality and my new title is "super-mom" and "advocate". I'm also now "educator" since very few people know anything about dwarfism so I'm working on that. It's interesting because I'm just learning as I go and trying to spread the knowledge. I honestly don't know what I would do without my LP (little people) groups on facebook. They have been my lifeline and my guidance in navigating this whole new world.
- Regular monthly pediatrician visits and shots
- Twice weekly physical therapy through Early Intervention
- Audiologist has administered 4 hearing tests since birth and confirmed he has "moderate" hearing loss in each ear (on a scale of slight-mild-moderate-severe)
- Nephrologist (Kidney Specialist) has seen evidence of an issue with his one kidney: a "reflux" effect where some of the urine output flows back into the kidney therefore increasing chances of reoccurring kidney infections
- Otolaryngologist (Ear/Nose/Throat Specialist) determined he may need surgery to remove tonsils and adenoids (and have ear tubes placed at the same time as he is prone to reoccurring ear infections)
- He had an overnight sleep study done at Boston Children's Hospital last week and we are waiting for the results to see if he has sleep apnea. If he does we are rooting for "obstructive" apnea as that would likely get better with the adenoidectomy, vs. "central" apnea which would be a bigger issue as that would mean his brain is not telling his body to consistently breathe while asleep
- Geneticist has referred us to a Neurosurgeon for an MRI to see if a certain area of his neck is causing spinal compression as we are beginning to see some evidence of possible nerve damage. If so, he will need to have decompression surgery on his spine at the base of his neck
- Appt scheduled with Orthopedic surgeon to examine kyphosis of his spine, bowing of the legs, and to ensure proper hip alignment
I think that's all of it. We have seen a LOT of doctors in 6 months. His pediatrician, geneticist, nephrologist, and physical therapists are through the hospital here in NH but I've asked for referrals for specific doctors (otolaryngologist, audiologist, neurosurgeon, orthopedic surgeon) at Boston Children's Hospital based on recommendations from other parents of little people. It has been quite a juggling act to get the different hospitals and doctors to interact, share info, xrays, films, etc. In certain instances we've also reached out to the skeletal dysplasia experts who work out of Wilmington, DE for second (or third) opinions. Most doctors do not have experience treating little people (and many doctors have differing opinions just to make it MORE confusing) so we've had to make certain judgment calls as parents new to the world of dwarfism on whether or not we think a certain doctor knows what s/he's doing (and unfortunately, in certain cases, they don't seem to). I've had to be "That Person" who demands more in depth information and further testing and referrals to other doctors. But it's just the name of the game I guess. In addition, we've had issues with insurance because once I quit my job Jack and I went onto my husband's insurance which has been a gigantic pain in the ass. In the last 6 months I have had to learn a LOT of new things not just about dwarfism, but about how hospitals operate, interacting with medical staff, tricks to get what you want, how to advocate for yourself, navigating insurance red-tape...you name it. This is my full time job. Now I'm amused that I contemplated going to back to work after maternity leave.
Jack has been a champ through it all. He really is awesome. Here he is during last week's sleep study:
 |
| We STILL cannot get all the adhesive and gunk out of his hair from all the electrodes they put on him so I think we're going to have to chop some of his sweet little locks :-( |
The potential surgeries (and even just the MRI) are scary for us because complications with anesthesia are common for little people. I'm trying not to think about that right now. These days I don't think much beyond the next appointment. If I think too much I might have a hard time moving forward. So instead, we are just plugging along. This is now my reality and my new title is "super-mom" and "advocate". I'm also now "educator" since very few people know anything about dwarfism so I'm working on that. It's interesting because I'm just learning as I go and trying to spread the knowledge. I honestly don't know what I would do without my LP (little people) groups on facebook. They have been my lifeline and my guidance in navigating this whole new world.
Jack: 6 Months
The good:
The bad:
My back went out on me. Sigh. I knew it was only a matter of time. Luckily I had just started physical therapy the week before so I already had an established connection nearby. (The twice weekly chiropractic visits were doing nothing for me.) So now we've flown my parents up from Florida yet again to come help and I'm in PT every day.
The ugly:
I'm gonna have to save that for another day. There is a lot of ugly unfortunately. Cliff's notes:
Hubby is not doing well mentally.
Ipso facto I am not doing well mentally.
Now I'm not doing well physically. (And he's never doing well physically.)
Today is Pregnancy & Infant Loss Awareness Day. I am grieving Petey so much it physically hurts.
We can no longer "ignore" Jack's dwarfism and just think of him like any other baby. He's not. We're starting to get into the thick of his medical issues. I am feeling less and less like a "normal" mother and more and more like a "special needs" mother.
I am beginning to feel hopeless about growing our family someday. I can't even take care of my one child - how am I supposed to take care of multiple? And that's IF we can even have another child who doesn't have major genetic issues. Our track record there is not so good. I'm scared that our 3 frosties aren't viable. I'm scared I'm incapable of conceiving a healthy baby. I'm scared that if we were to chance it and get pregnant again someday that we would have to go through hell again and say goodbye again. But I'm scared not to try. I'm scared that I will never feel like our family is complete with just Jack. I'm scared another child would cause my husband to have a mental break. I'm beginning to become convinced that my life will NEVER come close to the way I pictured it would be.
I need therapy.
Monday, September 28, 2015
Still waiting...
Warning: Pity Party commencing in 3...2...1...
When does it get easier? I'm still waiting for that magical happily ever after. Years of infertility, IVF, therapy, a hard pregnancy, learning halfway through that our child was severely mentally and physically deformed, having to terminate, grief, shame, sadness, more therapy, another hard (and scary) pregnancy, shocking news about his dwarfism just a few weeks before giving birth, relinquishing my goal of a vaginal birth, a hard recovery and infected c-section incision, those impossibly hard first few months with a newborn, continuing to fight post partum depression, trying to adjust to life as a SAHM, dealing with my own back pain as well as Hubs', our dog having behavioral issues since the baby came, in and out of Drs offices with Jack due to all his physical issues, developmental delays, physical therapy, falling behind with milestones, jealousy over everyone else's "normal" babies, getting bad news after bad news with each Dr appt...and now this. When does it get easier?!!
The "this" I am referring to is my husband's anxiety, depression and OCD. It appears he has paternal postnatal depression (PPND). I didn't even know that was a thing. I am the one with the fucked up hormones from giving birth!! But now he's said he feels like he has PTSD from everything - all the IF, our loss, coming to terms with Jack's condition, all the medical issues - all the stuff he apparently hasn't dealt with. After everything we have been through I honestly don't know what has been the hardest. I just know it sure as shit hasn't gotten any easier. When fighting IF I thought that once we finally got PG life would be better. It was what I had wanted for so long. And it finally happened. And it was a nightmare. Losing Petey was so much harder than IF. And then we had Jack and I thought our dream had come true. And it's true we have a beautiful wonderful son now and I am thankful. But he also has special needs and it is SO FUCKING HARD sometimes. And now not only can my husband not help care for him physically due to his back issues, he is no longer here mentally either. I feel so alone in this. It's the hardest thing I have ever done and I have no help. I have a baby with special needs and I have a husband who is needy and depressed and anxious and not sleeping and not eating and I am worried all day and all night. Now I am no longer sleeping either. Now I am eating my emotions and gaining weight. Now I have no energy to take care of Jack and all the house stuff because I am so drained from focusing on Hubs and whether or not he's ok. Now I have to take care of him and Jack and everything else. Now I am unable to take care of myself because I have given every part of myself away. THANK GOD I hired that nanny. Without me being able to look forward to a handful of hours a week where I can get a break, I would have already completely broken apart. But even with that time to "recharge" I really don't know how much longer I can do this.
Hubs is now on meds and in therapy. It's been about two weeks now and no change besides bad side effects from the meds. I need for him to get better. I need my partner back. I don't know how to do this alone.
Hell, I probably need therapy too. Not sure how I'm gonna squeeze that one in. I don't even have time to edit this post.
So there's my update. In a nutshell: Things are not so good around here. #understatement
When does it get easier? I'm still waiting for that magical happily ever after. Years of infertility, IVF, therapy, a hard pregnancy, learning halfway through that our child was severely mentally and physically deformed, having to terminate, grief, shame, sadness, more therapy, another hard (and scary) pregnancy, shocking news about his dwarfism just a few weeks before giving birth, relinquishing my goal of a vaginal birth, a hard recovery and infected c-section incision, those impossibly hard first few months with a newborn, continuing to fight post partum depression, trying to adjust to life as a SAHM, dealing with my own back pain as well as Hubs', our dog having behavioral issues since the baby came, in and out of Drs offices with Jack due to all his physical issues, developmental delays, physical therapy, falling behind with milestones, jealousy over everyone else's "normal" babies, getting bad news after bad news with each Dr appt...and now this. When does it get easier?!!
The "this" I am referring to is my husband's anxiety, depression and OCD. It appears he has paternal postnatal depression (PPND). I didn't even know that was a thing. I am the one with the fucked up hormones from giving birth!! But now he's said he feels like he has PTSD from everything - all the IF, our loss, coming to terms with Jack's condition, all the medical issues - all the stuff he apparently hasn't dealt with. After everything we have been through I honestly don't know what has been the hardest. I just know it sure as shit hasn't gotten any easier. When fighting IF I thought that once we finally got PG life would be better. It was what I had wanted for so long. And it finally happened. And it was a nightmare. Losing Petey was so much harder than IF. And then we had Jack and I thought our dream had come true. And it's true we have a beautiful wonderful son now and I am thankful. But he also has special needs and it is SO FUCKING HARD sometimes. And now not only can my husband not help care for him physically due to his back issues, he is no longer here mentally either. I feel so alone in this. It's the hardest thing I have ever done and I have no help. I have a baby with special needs and I have a husband who is needy and depressed and anxious and not sleeping and not eating and I am worried all day and all night. Now I am no longer sleeping either. Now I am eating my emotions and gaining weight. Now I have no energy to take care of Jack and all the house stuff because I am so drained from focusing on Hubs and whether or not he's ok. Now I have to take care of him and Jack and everything else. Now I am unable to take care of myself because I have given every part of myself away. THANK GOD I hired that nanny. Without me being able to look forward to a handful of hours a week where I can get a break, I would have already completely broken apart. But even with that time to "recharge" I really don't know how much longer I can do this.
Hubs is now on meds and in therapy. It's been about two weeks now and no change besides bad side effects from the meds. I need for him to get better. I need my partner back. I don't know how to do this alone.
Hell, I probably need therapy too. Not sure how I'm gonna squeeze that one in. I don't even have time to edit this post.
So there's my update. In a nutshell: Things are not so good around here. #understatement
Thursday, September 17, 2015
To the woman who called me a despicable human being
I have been thinking about writing this for months now so I finally did. I usually make a point to stay out of the pro-choice/pro-life debate but it had been eating at me and I felt the need for my voice to be heard. I wrote it with the intention of submitting it as an article...somewhere
I am interested in your (my trusty readers) honest opinions and critiques of this "article" if you are willing. Here goes:
*****All the trigger warnings. Seriously.*****
-------------------------------------------------------------------------------------
To the woman who called me a despicable human being
Well, not to my face. And not even to me specifically. But that didn't keep me from letting those words eat at me for months.
The words were spewed from behind the safety of her computer screen in an online thread about abortion. Heartless! Monsters! Anyone who could even think about having an abortion is a despicable human being!
Well, I had an abortion. A year and a half ago. At age 32. Happily married and financially secure. After struggling through years of infertility. After enduring in vitro fertilization to finally become pregnant. Never would I have thought I would have an abortion. Becoming pregnant at long last was my dream. It was what my husband and I had tried so hard for and prayed so much for. It was the happiest few months of my life.
Until it wasn't.
Until the doctors told us that this child whom we loved so much was so deformed he likely would not survive; that he would die in my womb and I would deliver a stillborn. And that if he somehow continued to grow enough to reach a very premature delivery he would need immediate brain surgery, spinal surgery, experimental procedures. There was very little chance his small, not yet fully developed body would be able to endure that. And he would suffer. It would be painful. And then, if he somehow miraculously defied all odds and survived he would be severely mentally and physically disabled. Permanently paralyzed. Likely unable to live even a shred of a normal life.
We couldn't cause that pain to our child. Or to ourselves, watching that happen. Or to his future siblings should he defy all odds. To sentence our child to a "life" like that would have been worse than death. We chose instead to terminate. We chose for him to pass away peacefully in his mother's womb, never knowing pain or surgery, never gasping for air that his underdeveloped lungs wouldn't be able to process, never feeling trapped in his jail of a body (if indeed he could think or feel at all). Instead we chose compassion. We chose love. And it was the hardest thing I have ever done.
I hate calling it an abortion. "Abortion" generates thoughts of women abusing the procedure, uncaring, using it as a form of birth control. But an abortion it was; and a late-term one at that. And I am thankful we had the law on our side and could make the choice that we did. My husband and I chose to suffer so that our child wouldn't have to. We certainly didn't make our decision lightly and we didn't make it because we didn't want a child with special needs. In fact, as I hold my second baby in my arms, an amazing little boy who has special needs due to a genetic condition that some choose to terminate for, I feel that we made the right choices for both of our children. We have had hard decisions to make but I feel at peace with them. I was not a monster for terminating that pregnancy. And I am certainly not a despicable human being. Heartless? Absolutely not. I feel the loss of my first child every day. I mourn him every day. And I love him every day.
I am a mother. I made the most difficult decision a mother should (n)ever have to make. But I made it out of love.
So to the woman who called me a despicable human being: Be grateful. Grateful that you have been lucky enough in life to be blissfully ignorant of how wrong your words are and how deeply they hurt. Be grateful that you don't know what it's like to walk in this woman's shoes.
I am interested in your (my trusty readers) honest opinions and critiques of this "article" if you are willing. Here goes:
*****All the trigger warnings. Seriously.*****
-------------------------------------------------------------------------------------
To the woman who called me a despicable human being
Well, not to my face. And not even to me specifically. But that didn't keep me from letting those words eat at me for months.
The words were spewed from behind the safety of her computer screen in an online thread about abortion. Heartless! Monsters! Anyone who could even think about having an abortion is a despicable human being!
Well, I had an abortion. A year and a half ago. At age 32. Happily married and financially secure. After struggling through years of infertility. After enduring in vitro fertilization to finally become pregnant. Never would I have thought I would have an abortion. Becoming pregnant at long last was my dream. It was what my husband and I had tried so hard for and prayed so much for. It was the happiest few months of my life.
Until it wasn't.
Until the doctors told us that this child whom we loved so much was so deformed he likely would not survive; that he would die in my womb and I would deliver a stillborn. And that if he somehow continued to grow enough to reach a very premature delivery he would need immediate brain surgery, spinal surgery, experimental procedures. There was very little chance his small, not yet fully developed body would be able to endure that. And he would suffer. It would be painful. And then, if he somehow miraculously defied all odds and survived he would be severely mentally and physically disabled. Permanently paralyzed. Likely unable to live even a shred of a normal life.
We couldn't cause that pain to our child. Or to ourselves, watching that happen. Or to his future siblings should he defy all odds. To sentence our child to a "life" like that would have been worse than death. We chose instead to terminate. We chose for him to pass away peacefully in his mother's womb, never knowing pain or surgery, never gasping for air that his underdeveloped lungs wouldn't be able to process, never feeling trapped in his jail of a body (if indeed he could think or feel at all). Instead we chose compassion. We chose love. And it was the hardest thing I have ever done.
I hate calling it an abortion. "Abortion" generates thoughts of women abusing the procedure, uncaring, using it as a form of birth control. But an abortion it was; and a late-term one at that. And I am thankful we had the law on our side and could make the choice that we did. My husband and I chose to suffer so that our child wouldn't have to. We certainly didn't make our decision lightly and we didn't make it because we didn't want a child with special needs. In fact, as I hold my second baby in my arms, an amazing little boy who has special needs due to a genetic condition that some choose to terminate for, I feel that we made the right choices for both of our children. We have had hard decisions to make but I feel at peace with them. I was not a monster for terminating that pregnancy. And I am certainly not a despicable human being. Heartless? Absolutely not. I feel the loss of my first child every day. I mourn him every day. And I love him every day.
I am a mother. I made the most difficult decision a mother should (n)ever have to make. But I made it out of love.
So to the woman who called me a despicable human being: Be grateful. Grateful that you have been lucky enough in life to be blissfully ignorant of how wrong your words are and how deeply they hurt. Be grateful that you don't know what it's like to walk in this woman's shoes.
Friday, September 11, 2015
Jack: 5 Months
I can't believe my little guy is already 5 months old. That's almost half a year already! Well, I can and I can't. Half a year sounds like a lot but parts of these past 5 months have felt so long. Having a newborn (especially one with some special needs) is so much harder than I ever thought it would be. It has been AMAZING but also tough.
Here's Jack's 5 month update!
His smile just makes me melt. It is the best part of my day. And thankfully, he's full of smiles these days so I have lots of good parts of each day :-) Five months is a fun age so far. He's so interactive and so inquisitive. Sometimes I look at him and just think to myself: "He's a HUMAN. He's his own person and we MADE him." It's nuts.
Things have gotten better recently because I got some help. Not the therapy kind but the nanny kind. We hired someone to come to our home to take care of Jack a couple hours a day, a few days a week. It has been a wonderful thing for me to have a break. I haven't gotten too deep into it on here but things have been tough on me physically because my husband's chronic back pain keeps him from being able to hold Jack for more than 2-3 minutes at a time so it's been ALL me ALL the time. And due to his Achon, Jack has to be held almost continuously as he can't be put in a swing or bouncer or exersaucer. Carrying around a 15 lb baby all day everyday was not only causing my back to become complete shit but also causing me to have a bit of mental breakdown because I couldn't get ANYTHING done and could never have even one moment to myself. I pee with the kid on my lap most times for God's sake! But Nanny J started last week and I love her and Jack loves her. It was very hard for me to admit that I couldn't do it all myself but once I finally got over that it has been a godsend. I can poop if I need to now! And shave my legs and clean the bathroom and make dinner and go to chiropractor appointments and and and... I even went out to get a pedicure yesterday! I still struggle to not feel selfish about this whole situation but my hubby has encouraged me all along to do this, and to use the time she's here to go out and do things for ME to help my mental state so that I feel like a person again. He feels awful that he can't physically help with Jack. I don't know what to say about that - I feel awful he can't physically help with Jack too. I am envious of those women who can hand the baby off to their husband when he gets home, even if only for an hour, but I can't. I can't ever give Hubs a night feeding, even on the weekends, because he can't physically lift Jack out of his crib. I can't take the dog for a walk in the evening because even if the baby is happily playing on his playmat when I leave, if he starts to cry my husband can't pick him up to soothe him. It's a shitty situation. But there's nothing that can be done about it so Nanny J is the next best thing. Hubs says that he has better days at work now because he knows that I can have a break. It makes him feel good and that makes me feel good. (Getting a pedicure feels pretty good too :-) )
Other that that, not too much to report. I wish I could get on here more often to blog because there are good things that happen all the time that I'd want to write about but now they've just fluttered away out of my useless brain. Over the past month we've had lots of playdates with other baby friends including another LP (little person) playdate with Jack's two dwarf baby friends in the area. He met a ton more family and friends, we spent a lot of time out in the pool during hot days... Stuff happened. It's been good.
Here's a photodump!
I fuckin love this kid.
Here's Jack's 5 month update!
His smile just makes me melt. It is the best part of my day. And thankfully, he's full of smiles these days so I have lots of good parts of each day :-) Five months is a fun age so far. He's so interactive and so inquisitive. Sometimes I look at him and just think to myself: "He's a HUMAN. He's his own person and we MADE him." It's nuts.
Things have gotten better recently because I got some help. Not the therapy kind but the nanny kind. We hired someone to come to our home to take care of Jack a couple hours a day, a few days a week. It has been a wonderful thing for me to have a break. I haven't gotten too deep into it on here but things have been tough on me physically because my husband's chronic back pain keeps him from being able to hold Jack for more than 2-3 minutes at a time so it's been ALL me ALL the time. And due to his Achon, Jack has to be held almost continuously as he can't be put in a swing or bouncer or exersaucer. Carrying around a 15 lb baby all day everyday was not only causing my back to become complete shit but also causing me to have a bit of mental breakdown because I couldn't get ANYTHING done and could never have even one moment to myself. I pee with the kid on my lap most times for God's sake! But Nanny J started last week and I love her and Jack loves her. It was very hard for me to admit that I couldn't do it all myself but once I finally got over that it has been a godsend. I can poop if I need to now! And shave my legs and clean the bathroom and make dinner and go to chiropractor appointments and and and... I even went out to get a pedicure yesterday! I still struggle to not feel selfish about this whole situation but my hubby has encouraged me all along to do this, and to use the time she's here to go out and do things for ME to help my mental state so that I feel like a person again. He feels awful that he can't physically help with Jack. I don't know what to say about that - I feel awful he can't physically help with Jack too. I am envious of those women who can hand the baby off to their husband when he gets home, even if only for an hour, but I can't. I can't ever give Hubs a night feeding, even on the weekends, because he can't physically lift Jack out of his crib. I can't take the dog for a walk in the evening because even if the baby is happily playing on his playmat when I leave, if he starts to cry my husband can't pick him up to soothe him. It's a shitty situation. But there's nothing that can be done about it so Nanny J is the next best thing. Hubs says that he has better days at work now because he knows that I can have a break. It makes him feel good and that makes me feel good. (Getting a pedicure feels pretty good too :-) )
Other that that, not too much to report. I wish I could get on here more often to blog because there are good things that happen all the time that I'd want to write about but now they've just fluttered away out of my useless brain. Over the past month we've had lots of playdates with other baby friends including another LP (little person) playdate with Jack's two dwarf baby friends in the area. He met a ton more family and friends, we spent a lot of time out in the pool during hot days... Stuff happened. It's been good.
Here's a photodump!
 | |
| "Hi mama!" |
 | |
| Learning that hair pulling doesn't feel good LOL |
 | |
| Dr cleared him to be able to sit in his rock n' play for 15 mins per day! Rejoice!! |
 |
| Still not so sure about this giraffe but learning to accept him. |
 |
| Drooly monster! |
 |
| Practicing his modeling poses |
 | |
| Hi! |
 |
| Deep in conversation with red bird |
I fuckin love this kid.
Monday, August 10, 2015
Jack: 4 Months
Big doings in our world: At exactly 4 months yesterday (technically 17.5weeks), Jack officially started rolling from back to belly!! And now he wants to do it all the time haha! Very cute and I'm so proud of him (especially since most Achon kiddos are delayed with this) but problem is he can't roll back again so when he gets sick of being on his belly he screams bloody murder and I have to go save him. This is his new favorite thing to do.
Yesterday was a big day; he also officially started laughing out loud. Seriously the BEST sound in the world. I spend all my time now making a fool out of myself so I can get him to laugh. Whether in his nursery or the grocery store checkout, doesn't matter. Anything to see that huge gummy smile and hear that adorable giggle. 4 months is shaping up to be my favorite age so far!
He is such a sweet baby. Things are getting easier overall, mainly because I can tell the difference between most of his cries and whines now and can usually know what he wants and anticipate it. What is harder though is that he's so damn heavy! My back feels like it's gonna break pretty much all the time. That part's rough. And Hubby's back is the worst it has EVER been so he can't really do anything to help (that's a whole separate post) so whenever we don't have visitors it is all me, all the time. Needless to say I don't rest much. I am slowly losing weight and getting stronger without even trying. In fact, if I stopped eating so much crap I'd probably be down another 5+ lbs by now. I just don't have the energy to care right now though.
Things are great though and Jack is my world. Surprisingly I'm not ashamed to admit it. I am 100% smitten with this little guy and am so glad I made the decision to stay home with him. I don't look forward to winter though since we won't be able to be outside much. (We spend most days now sitting out by the pool playing and visiting with company.) In the winter I think I'll need to make an effort to find mommy & me groups or something. I hate joining in that shit.
In other news, it is August. I had a hard time at the end of July as this month inched closer and closer because I always think of August as Petey's month. He should have been turning one this coming Saturday. I should have a one year old. It's emotional to think about that. I miss him and I think of him every day. Now that Jack is here and I am watching him grow and reach milestones it changes the way I grieve Petey. In a way I think it's actually harder because now I KNOW what I'm missing with Petey and what I'll never have with him. Now it's not grieving the loss of how I imagine things might have been, now it's more tangible and concrete. But I am also painfully aware that if we had never lost Petey we would never have had Jack. My pregnancy with Petey allowed me to become pregnant with Jack and for that I will be forever grateful. My heart is full but there will always be a piece of it missing.
Yesterday was a big day; he also officially started laughing out loud. Seriously the BEST sound in the world. I spend all my time now making a fool out of myself so I can get him to laugh. Whether in his nursery or the grocery store checkout, doesn't matter. Anything to see that huge gummy smile and hear that adorable giggle. 4 months is shaping up to be my favorite age so far!
He is such a sweet baby. Things are getting easier overall, mainly because I can tell the difference between most of his cries and whines now and can usually know what he wants and anticipate it. What is harder though is that he's so damn heavy! My back feels like it's gonna break pretty much all the time. That part's rough. And Hubby's back is the worst it has EVER been so he can't really do anything to help (that's a whole separate post) so whenever we don't have visitors it is all me, all the time. Needless to say I don't rest much. I am slowly losing weight and getting stronger without even trying. In fact, if I stopped eating so much crap I'd probably be down another 5+ lbs by now. I just don't have the energy to care right now though.
Things are great though and Jack is my world. Surprisingly I'm not ashamed to admit it. I am 100% smitten with this little guy and am so glad I made the decision to stay home with him. I don't look forward to winter though since we won't be able to be outside much. (We spend most days now sitting out by the pool playing and visiting with company.) In the winter I think I'll need to make an effort to find mommy & me groups or something. I hate joining in that shit.
Tuesday, July 28, 2015
"You have a tough baby."
Jack had his first PT appointment with Early Intervention today. It went okay overall. He's delayed with some of the physical milestones but that's to be expected due to both his dwarfism and the torticollis. Apparently at almost 4 months his head control and certain movements are measuring more like a 1.5 month old. I'm not surprised about this but it was still a little hard to hear.
The therapist had to do a full evaluation so she asked about any and all medical issues and concerns then she had me list off the specialists he's needed to see so far: Geneticist, nephrologist, audiologist, ear/nose/throat, orthopedist. And, oh yeah, all his regular appointments with his pediatrician.
Her response? "Yeah, you have a tough baby."
Umm...screw you.
I don't quite know why this bothered me so much but it really did. And now here I am at 2:00am unable to sleep even though I so desperately need it because I'm upset about her comment.
Sure he has some issues; acid reflux, not a great sleeper, we think he may have sleep apnea, he's pretty fussy in general. And of course, the skeletal dysplasia and all the physical challenges that come along with that.
Sure we have to make some special accommodations for him: His back and neck have to be straight and supported at all times so he can only lay in certain bassinets instead of swings and other toys. He needs (and wants) to be held almost all the time despite my back pain but I can't wear him because it would do damage to his back and neck. I won't be able to put him in exersaucers or sit up chairs. We'll have to physically alter parts of the house to make things accessible to him. He may not crawl. It will likely be a very long time before he can walk...
So it's hard. So he's delayed. So what?
Don't make me feel like we have some deficit. Don't tell me we have a "tough baby" and give me an 'out' to feel bad for myself.
You asked about all the challenges. What about all the good? What about the fact that he is so smiley and adorable that he just melts everyone he meets? That he LOVES his mama and loves people and loves to talk and tell them stories? What about the fact that even after a night of very little sleep when I'm exhausted and can barely function all he has to do is give me a smile and all that just disappears? What about the fact that we worked SO HARD for this baby and it doesn't matter to me that he has special needs?
I don't want a reason to feel bad for him or for myself. Yes he has (and will have) challenges. But these were the cards we were dealt and I am still LUCKY to have him. I don't want people to give me a reason to forget that. To get so wrapped up in things not being "normal" that I forget that "normal" doesn't matter. I am so grateful for this child and so happy he is in my life that these challenges don't matter. They don't need to define him or us.
Acknowledging that things are tough is one thing. It's true; things are tough. But calling him a "tough baby" is another. I am grateful for my tough baby. He is the light of my life, challenges or not.
The therapist had to do a full evaluation so she asked about any and all medical issues and concerns then she had me list off the specialists he's needed to see so far: Geneticist, nephrologist, audiologist, ear/nose/throat, orthopedist. And, oh yeah, all his regular appointments with his pediatrician.
Her response? "Yeah, you have a tough baby."
Umm...screw you.
I don't quite know why this bothered me so much but it really did. And now here I am at 2:00am unable to sleep even though I so desperately need it because I'm upset about her comment.
Sure he has some issues; acid reflux, not a great sleeper, we think he may have sleep apnea, he's pretty fussy in general. And of course, the skeletal dysplasia and all the physical challenges that come along with that.
Sure we have to make some special accommodations for him: His back and neck have to be straight and supported at all times so he can only lay in certain bassinets instead of swings and other toys. He needs (and wants) to be held almost all the time despite my back pain but I can't wear him because it would do damage to his back and neck. I won't be able to put him in exersaucers or sit up chairs. We'll have to physically alter parts of the house to make things accessible to him. He may not crawl. It will likely be a very long time before he can walk...
So it's hard. So he's delayed. So what?
Don't make me feel like we have some deficit. Don't tell me we have a "tough baby" and give me an 'out' to feel bad for myself.
You asked about all the challenges. What about all the good? What about the fact that he is so smiley and adorable that he just melts everyone he meets? That he LOVES his mama and loves people and loves to talk and tell them stories? What about the fact that even after a night of very little sleep when I'm exhausted and can barely function all he has to do is give me a smile and all that just disappears? What about the fact that we worked SO HARD for this baby and it doesn't matter to me that he has special needs?
I don't want a reason to feel bad for him or for myself. Yes he has (and will have) challenges. But these were the cards we were dealt and I am still LUCKY to have him. I don't want people to give me a reason to forget that. To get so wrapped up in things not being "normal" that I forget that "normal" doesn't matter. I am so grateful for this child and so happy he is in my life that these challenges don't matter. They don't need to define him or us.
Acknowledging that things are tough is one thing. It's true; things are tough. But calling him a "tough baby" is another. I am grateful for my tough baby. He is the light of my life, challenges or not.
Sunday, July 12, 2015
LP Playdate!
When Hubs and I first learned at about 36w PG that Jack had dwarfism we had no idea how to feel; what to think, what to do, where to turn to for help. We googled and found Little People of America organization which had helpful info and resources but what really helped us the most was the facebook group we found for parents of little people (POLP). When I joined that support group I introduced myself and relayed our situation and immediately received not only support and understanding but also tons of helpful advice and private messages from every other mom of an LP (little person) who lives in my general area of Boston and surrounding suburbs. Dwarfism is quite uncommon as it is a random genetic mutation that occurs in only 1 in 25,000 pregnancies so it was pretty awesome to learn that we're not alone and there are other (normal, nice) moms in my general area going through the same thing. I've been connecting with quite a few of these women over the past months and yesterday three of us who have young babies got together at my house for a BBQ/pool day! It was awesome :-) It was so nice to connect in person with our babies and our husbands too... I'm feeling like we're starting a real community in our little area and I know we will remain connected as the babies grow since it will be important for not just us to be with others who understand but, more importantly, for our kids to have friends who are like them; friends who they can be with and play with and, for that day, NOT feel "different" from everyone else.
Here are pics from our first playdate of likely many to come: Jack and his new best buds!
Here are pics from our first playdate of likely many to come: Jack and his new best buds!
Friday, July 10, 2015
Jack: 3 Months
Hello poor neglected blog. Somehow I have a 3 month old! And he is AMAZING. I seriously love him more and more every day (which sounds kinda bad in my mind like I didn't love him all that much beforehand or something but whatever). I am delirious with love for this little guy. Well, with that and lack of sleep :-)
Big updates:
I quit my job. I went in for the last time to clean up and say goodbye this past Monday. It was so bittersweet. I was sad and while walking away I wasn't sure if I made the right decision or not. Then I got home and the second Jack saw me he gave me the biggest gummy smile I've ever seen and that answered my question right there. How can I NOT be home with this guy if I have the option to be?
Jack's health: He went through a phase a few weeks ago where he was screaming in pain almost every time he ate and my awesome eater went from having 4oz every 3 hrs like clockwork to barely eating 1oz before I gave up and just rocked him to sleep as the only way to soothe him and stop his crying. It was really sad and mealtimes were horrendous. Took him to doc and they suspected acid reflux. Changed formula to Similac No Spit-Up (even though he doesn't spit up) as it contains rice starch and that seemed to do the trick! He's now a total piglet.
We also stuck a wedge (aka folded-up blanket) under the head of his bassinet mattress and now he seems to be sleeping a bit better too. This has helped keep the acid down and has also helped with his snoring/gasping/waking himself up in the night. We're pretty sure he had sleep apnea. Very common with Achon. We have an appt to see Ear/Nose/Throat (ENT) doc to assess this and do a sleep study.
Also, Jack had his follow up appt with the Audiologist (since he failed both hearing tests in the hospital) and they confirmed that he does have hearing loss. Mild loss in one ear and just slight in the other. Again, common with Achon. For now we'll just continue to monitor it and hope it doesn't get worse. He will likely need ear tubes at some point around or even before his first birthday anyway so that might possibly help but we'll see if he needs a hearing aid down the line.
Finally, Jack has torticollus in his neck (prefers to always lay with his head to the same side and this is also causing a flat spot) so we contacted Early Intervention and will be starting physical therapy next week!
Things are moving along with him. Monitoring the issues we expected to come up and thankfully haven't had any unexpected things happen yet. Besides the ENT doc he also has upcoming appointments with the Geneticist and Nephrologist (kidney doc) and then his 4mo appt next month!
I've been in touch with my RE about next steps for me and Hubs regarding someday expanding our family since I suspect we will need to think long and hard about what we want to do. He did indeed suggest genetic testing for both of us and also PGD for our 3 frosties as "we can't be sure if they are genetically viable or not due to [my] pregnancy history". Ouch. I am very emotional about this. I've always thought of those 3 frosties as the completion of our family, just waiting for us. Now I have no idea what will happen. PGD could destroy them if we thaw and then refreeze any "viable" ones. We could go through all the steps (and meds) of a FET and then do PGD just before transfer to ensure we are transferring a healthy embie and then what if testing reveals we don't have a healthy one and they all have genetic issues? Would we make the decision to ::gulp:: destroy them? What if we transfer anyway and what happened to Petey happens to another little baby? I'm not sure my heart could take it. I'm not positive my heart can take ANY of this... It's a shitty shitty place to be.
But besides that emotional land mine I am doing well. My PP bleeding is still unpredictable even after being on BCPs for the last 2 months so that's fun. OB said we'll give it one more month and if I'm still bleeding we'll try a new med. Bleeding for the majority of the last 13 weeks sure has been fun though lemme tell ya! Things are good though. We're busy because it's summer and there's lots of family and friends around. Not much time to think but I am happy.
Here are some more pics of my beautiful baby. He's smiley, he can reach for his toys, he's learning to wave... He's just amazing. 3 months is shaping up to be a very fun age since he is finding ways to communicate and connect. Every new thing he does is just amazing to me. Every day I am grateful and can't believe he's ours. We MADE him. That is incredible.
Big updates:
I quit my job. I went in for the last time to clean up and say goodbye this past Monday. It was so bittersweet. I was sad and while walking away I wasn't sure if I made the right decision or not. Then I got home and the second Jack saw me he gave me the biggest gummy smile I've ever seen and that answered my question right there. How can I NOT be home with this guy if I have the option to be?
 |
We also stuck a wedge (aka folded-up blanket) under the head of his bassinet mattress and now he seems to be sleeping a bit better too. This has helped keep the acid down and has also helped with his snoring/gasping/waking himself up in the night. We're pretty sure he had sleep apnea. Very common with Achon. We have an appt to see Ear/Nose/Throat (ENT) doc to assess this and do a sleep study.
Also, Jack had his follow up appt with the Audiologist (since he failed both hearing tests in the hospital) and they confirmed that he does have hearing loss. Mild loss in one ear and just slight in the other. Again, common with Achon. For now we'll just continue to monitor it and hope it doesn't get worse. He will likely need ear tubes at some point around or even before his first birthday anyway so that might possibly help but we'll see if he needs a hearing aid down the line.
Finally, Jack has torticollus in his neck (prefers to always lay with his head to the same side and this is also causing a flat spot) so we contacted Early Intervention and will be starting physical therapy next week!
Things are moving along with him. Monitoring the issues we expected to come up and thankfully haven't had any unexpected things happen yet. Besides the ENT doc he also has upcoming appointments with the Geneticist and Nephrologist (kidney doc) and then his 4mo appt next month!
I've been in touch with my RE about next steps for me and Hubs regarding someday expanding our family since I suspect we will need to think long and hard about what we want to do. He did indeed suggest genetic testing for both of us and also PGD for our 3 frosties as "we can't be sure if they are genetically viable or not due to [my] pregnancy history". Ouch. I am very emotional about this. I've always thought of those 3 frosties as the completion of our family, just waiting for us. Now I have no idea what will happen. PGD could destroy them if we thaw and then refreeze any "viable" ones. We could go through all the steps (and meds) of a FET and then do PGD just before transfer to ensure we are transferring a healthy embie and then what if testing reveals we don't have a healthy one and they all have genetic issues? Would we make the decision to ::gulp:: destroy them? What if we transfer anyway and what happened to Petey happens to another little baby? I'm not sure my heart could take it. I'm not positive my heart can take ANY of this... It's a shitty shitty place to be.
But besides that emotional land mine I am doing well. My PP bleeding is still unpredictable even after being on BCPs for the last 2 months so that's fun. OB said we'll give it one more month and if I'm still bleeding we'll try a new med. Bleeding for the majority of the last 13 weeks sure has been fun though lemme tell ya! Things are good though. We're busy because it's summer and there's lots of family and friends around. Not much time to think but I am happy.
Here are some more pics of my beautiful baby. He's smiley, he can reach for his toys, he's learning to wave... He's just amazing. 3 months is shaping up to be a very fun age since he is finding ways to communicate and connect. Every new thing he does is just amazing to me. Every day I am grateful and can't believe he's ours. We MADE him. That is incredible.
 |
| Someone loves his daddy! |
 | ||
| This one was almost the monthly update photo... |
 |
| ...or this one. "Who the heck is this guy?" |
 | |||
| And now at 13 weeks - such a big boy <3 |
Sunday, June 14, 2015
Jack: 2 Months
Jack is officially 9 weeks old now. Things are going well. Blogging is impossible these days :-( I hope I will be able to do it again someday.
Did ya see that last one? Achondroplasia: CONFIRMED!!! We are so happy. It's the most common form, therefore the best understood by doctors, and comes with some of the fewest health complications. Wonderful news :-) Jack is doing great and we have his 2 month checkup with the pediatrician on Tuesday.
I am doing well too. Big news on my front is that I've decided I'm not going to go back to work. I'm going to be a SAHM. I have never NOT worked since the day I turned 16 so this is going to be interesting for me. I'm going in on Wednesday morning to meet with my boss and give my notice. Eeep!!
Did ya see that last one? Achondroplasia: CONFIRMED!!! We are so happy. It's the most common form, therefore the best understood by doctors, and comes with some of the fewest health complications. Wonderful news :-) Jack is doing great and we have his 2 month checkup with the pediatrician on Tuesday.
I am doing well too. Big news on my front is that I've decided I'm not going to go back to work. I'm going to be a SAHM. I have never NOT worked since the day I turned 16 so this is going to be interesting for me. I'm going in on Wednesday morning to meet with my boss and give my notice. Eeep!!
Tuesday, May 26, 2015
7 weeks PP (almost)
At 6/7 weeks post-partum, things are getting much much better. We've been able to fall into more of a routine which has been very helpful for me. The last couple weeks everybody was gone; my parents went back to FL, my MIL was back at work (so no longer visiting during the week), and Hubs was at work. I will say it is a lot being the only one here with the baby all day every day (and then being responsible for him during the night too so that Hubs can sleep and actually be productive at work) but it is okay. In fact,
I had a moment last week when I was out shopping with Jack where I just felt happy and content with my new life. I can honestly say that's the first true time that has happened. I thought: "yeah, I can do this. I AM doing this..." That's a big relief.
It's not to say it's not still hard because it is, particularly around 4am when I've been with Jack all day, Hubs took him for a couple hours after he got home from work to give me a break, then I was with the baby all night too and then he just decides he doesn't want to go down again after his middle of the night feeding - it's then when I just have a slight breakdown from exhaustion and so much broken sleep and I bring him to Hubs crying. He's always good about taking Jack at those times though. He gets up quickly, grabs the baby and tells me to just go to bed and not worry about it. Sometimes I just cry with relief.
Things are good though. Jack is sleeping for longer stretches during the night and is up a lot during the day so it seems he's got his nocturnal thing kicked. Hooray! I would say I'm able to have a pretty normal life now where I usually get an okay amount of sleep at night now (although quite broken up), often can get a chance to get in a nap in the late morning if I make myself take a break (hard to do when there's laundry, dishes, cleaning, food shopping, errands, showering, etc. to do), and now I'm able to predict with some amount of certainty how much time I have to run errands, etc. based on his sleeping and eating schedule. During the day he eats 4oz every 3 hours like clockwork now. It's pretty awesome. At night he stretches that to more like 4-4.5 hours. In his bassinet. In our room. NOT in the living room (or in my arms) anymore. That is EXTREMELY awesome.
Stopping breastfeeding/pumping has done wonders for me both mentally and physically. I made the decision to stop last week. It was hard for me to decide to stop but in the end I am very glad I did. It was just too hard. I couldn't the find time to do it, the amount of milk I'd get during a pumping session just kept dwindling and dwindling, I was exhausted, disappointed, feeling like a failure, feeling crazy... it was better for us both that I stopped. I have been a better mother because of it. And Jack is still healthy, happy and growing well. I don't know what took me so long or why I beat myself up so much trying so hard to make something work that just wasn't going to work. I feel so much relief now.
I had my 6week post partum check up last Wed. My c-section incision is infected. ::Sigh:: I kind of knew it but just didn't have time(?) to deal with that problem. I should have made it a priority but I just didn't. The doctor told me sternly: "You need to rest more so you can heal". I told her that's impossible. She told me to figure it out because that's what needs to happen. So, we flew my parents back up here yet again from FL a few days ago. Hubs ended up having to go to San Francisco for work all this week and there was a zero percent chance I'd be able to get any rest whatsoever without him here so it was either hire someone through care.com who I don't know and I'd have to teach them the ropes/worry about them with Jack, or just use that money to fly my parents back up again. No brainer. Man, I'm glad they're retired!! They'll be here through Saturday when Hubs gets home. I was a little worried about bringing them back since last time they were here I was in a bad place mentally and kept having crying breakdowns so I sort of equated those feelings with them being here, but things have gotten so much better over the past couple weeks. I'm feeling so much better and more like myself (albeit still constantly tired). I'm not sure if it was post-partum hormones taking a handful of weeks to sort themselves out or if it was hormone changes from BF (or maybe from actually stopping BF/pumping) but I'm just in a much better place now.
Anywho, back to the dr appt: So yeah, my incision is infected. I'm on antibiotics for the next week and have to clean and redress the area 3 times a day while getting air to it for chunks of time each day so that's fun. Besides that, I've been cleared for sex again! Yahoo! Only...not. I have had absolutely no interest in sex for oh, 9 months or so, so I'm not exactly champing at the bit to get some action. Poor hubs. But, that seems to be changing a bit as I go longer and longer without BF so maybe that's coming back. That means I'm back on birth control pills now. I am just REALLY hoping that those will get me back to how I was feeling 3 years ago when I went off of them for the first time when we started trying to conceive. (Y'know, before my hormones went mental from taking all kinds of fertility meds, then getting PG, then PG loss, then PG again, then BF... it's been quite a journey with that)
Other body changes:
I'll take the sacrifice :-)
He is doing awesome. He's focusing so much more now. He recognizes mine and Hubs' voices and looks around for us. He looks at his toys, he looks at our faces...he melts my heart! And I just KNOW there's a real smile right around the corner. I cannot WAIT :-)
It's not to say it's not still hard because it is, particularly around 4am when I've been with Jack all day, Hubs took him for a couple hours after he got home from work to give me a break, then I was with the baby all night too and then he just decides he doesn't want to go down again after his middle of the night feeding - it's then when I just have a slight breakdown from exhaustion and so much broken sleep and I bring him to Hubs crying. He's always good about taking Jack at those times though. He gets up quickly, grabs the baby and tells me to just go to bed and not worry about it. Sometimes I just cry with relief.
Things are good though. Jack is sleeping for longer stretches during the night and is up a lot during the day so it seems he's got his nocturnal thing kicked. Hooray! I would say I'm able to have a pretty normal life now where I usually get an okay amount of sleep at night now (although quite broken up), often can get a chance to get in a nap in the late morning if I make myself take a break (hard to do when there's laundry, dishes, cleaning, food shopping, errands, showering, etc. to do), and now I'm able to predict with some amount of certainty how much time I have to run errands, etc. based on his sleeping and eating schedule. During the day he eats 4oz every 3 hours like clockwork now. It's pretty awesome. At night he stretches that to more like 4-4.5 hours. In his bassinet. In our room. NOT in the living room (or in my arms) anymore. That is EXTREMELY awesome.
Stopping breastfeeding/pumping has done wonders for me both mentally and physically. I made the decision to stop last week. It was hard for me to decide to stop but in the end I am very glad I did. It was just too hard. I couldn't the find time to do it, the amount of milk I'd get during a pumping session just kept dwindling and dwindling, I was exhausted, disappointed, feeling like a failure, feeling crazy... it was better for us both that I stopped. I have been a better mother because of it. And Jack is still healthy, happy and growing well. I don't know what took me so long or why I beat myself up so much trying so hard to make something work that just wasn't going to work. I feel so much relief now.
I had my 6week post partum check up last Wed. My c-section incision is infected. ::Sigh:: I kind of knew it but just didn't have time(?) to deal with that problem. I should have made it a priority but I just didn't. The doctor told me sternly: "You need to rest more so you can heal". I told her that's impossible. She told me to figure it out because that's what needs to happen. So, we flew my parents back up here yet again from FL a few days ago. Hubs ended up having to go to San Francisco for work all this week and there was a zero percent chance I'd be able to get any rest whatsoever without him here so it was either hire someone through care.com who I don't know and I'd have to teach them the ropes/worry about them with Jack, or just use that money to fly my parents back up again. No brainer. Man, I'm glad they're retired!! They'll be here through Saturday when Hubs gets home. I was a little worried about bringing them back since last time they were here I was in a bad place mentally and kept having crying breakdowns so I sort of equated those feelings with them being here, but things have gotten so much better over the past couple weeks. I'm feeling so much better and more like myself (albeit still constantly tired). I'm not sure if it was post-partum hormones taking a handful of weeks to sort themselves out or if it was hormone changes from BF (or maybe from actually stopping BF/pumping) but I'm just in a much better place now.
Anywho, back to the dr appt: So yeah, my incision is infected. I'm on antibiotics for the next week and have to clean and redress the area 3 times a day while getting air to it for chunks of time each day so that's fun. Besides that, I've been cleared for sex again! Yahoo! Only...not. I have had absolutely no interest in sex for oh, 9 months or so, so I'm not exactly champing at the bit to get some action. Poor hubs. But, that seems to be changing a bit as I go longer and longer without BF so maybe that's coming back. That means I'm back on birth control pills now. I am just REALLY hoping that those will get me back to how I was feeling 3 years ago when I went off of them for the first time when we started trying to conceive. (Y'know, before my hormones went mental from taking all kinds of fertility meds, then getting PG, then PG loss, then PG again, then BF... it's been quite a journey with that)
Other body changes:
- My weight has leveled off at about 5 lbs under my pre-pregnancy weight so that's good.
- The extra flap of skin on my stomach that used to sort
of hang over my incision scar has mostly stretched back. It's still
flabby though and I'm sure it will be for a while until I can actually start working out..
- I still cannot get my engagement ring back on my finger :-( I am so sad about that!! I've been able to wear my wedding band since about 3w PP but that diamond just will not make it back on. At this point I'm not sure what to do. Unless I start a weight loss program that thing will not be making an appearance anytime soon.
- PP bleeding stopped somewhere between 5-6w after birth. It's been really nice to not have to wear a pad constantly. I feel bad for Jack who has to wear a diaper around the clock!
- My face is fatter than it used to be and I now have ever-present bags under my eyes.
- My feet went back to normal a couple weeks after birth (thank GOD) but my toes look horrific. I really need a pedicure. I wasn't able to reach my toes for while there and now I just don't have time! When I finally get one it's gonna be like that scene in Dumb and Dumber.
- My back pain has mostly dissipated now which is a huuuuge relief. I have still been going to the chiropractor twice a week and am not sure if it's actually helping or not but I continue to go. I think the excruciating pain was lingering stuff from the c-section and from my body (ligaments, etc.) going back to where they used to be before pregnancy. I'm so thankful I can walk and do things again without feeling like my back is going to go out on me at any moment.
- Finally, my breasts are gross now. They are pretty much ruined, haha. Flat, misshapen, no longer perky by any stretch of the imagination... The nips were relatively mutilated for a while there but they are healing up now which is a very good thing. Ah well - the price you pay to have this beautiful little guy:
I'll take the sacrifice :-)
He is doing awesome. He's focusing so much more now. He recognizes mine and Hubs' voices and looks around for us. He looks at his toys, he looks at our faces...he melts my heart! And I just KNOW there's a real smile right around the corner. I cannot WAIT :-)
Saturday, May 16, 2015
Baby picture post
Need to attention-whore my adorable child some more now that he's almost 6 weeks old!
 |
| Wide eyed at 3 weeks |
 |
| Put the milk in my mouth mama! (4 weeks) |
 |
| 4 weeks |
 |
| 5 weeks |
 |
| You can really see the dwarfism with his adorable little legs! (5 weeks) |
It's so fun that he's starting to be more attentive to things now and able to focus! Can't wait for interaction :-)
Thursday, May 14, 2015
Jack: One Month
Me: One Month
I would say I am doing better since my last post. Granted, I'm a week late since Jack is actually 5 weeks old today but things don't feel quite so hard and overwhelming at the moment. (Thankfully.)
My parents left this past Sunday. They were a HUGE help during a time when I really needed it but I'm actually kind of glad they're gone now because now this is "real life". THIS is now our life - mine and Hubs - and we're figuring out how to navigate it. It was impossible to start to do that until they left. Over the past few weeks though I was having a hard time adjusting to all the changes and lack of sleep and lack of schedule, plus I was having excruciating back pain which made it very difficult to do much of anything so we really needed them. But my back pain has gotten much better (again: Thankfully) and little man has now started sleeping at night! I cannot tell you what a relief that is. We've been able to get on somewhat of a schedule now and it has been so helpful for my mental state. A couple weeks ago I also created a daily spreadsheet so I could track what Jack did every half hour of the day (whether he was awake, asleep, fussy, crying, etc.) plus when he ate and how much, when he had dirty diapers, when we gave him meds, etc. Call me crazy but it has been SO HELPFUL. There are seriously times I can barely remember my own name let alone the last time he ate or how much it was, and when my parents were here there were four adults participating in his care (seriously - FOUR for one little baby and I still felt overwhelmed - that goes to show what a mindfuck PP hormones are), and so I never really had a handle on if he was developing some sort of natural schedule or not. Turns out - he was! I was able to discover some relatively reliable times for naps, etc. and using the charts we were able to better "plan" his meals and sleep to work better during the days and nights (as much as you can plan with a newborn that is). Things feel so much more manageable in that regard now and it has helped me so much mentally.
Breastfeeding is still... a topic I don't like talking or thinking about. I do feel like I failed there.
I have been exclusively pumping for the last couple weeks. I hate it. I hate the way it feels, I hate being hooked up to a machine milking myself like a cow, I hate the cracked and painful state of my nipples, I hate that I still have almost no supply to speak of... I stopped actually nursing him a couple weeks ago for multiple reasons:
-Whenever Jack would nurse it would take him almost an hour - to the point where I didn't really know if he was still getting anything or just using me as a human pacifier - and then he'd still be hungry and we'd have to give him formula anyway. We never knew how much milk he was actually getting, and when he nursed sometimes he'd be really fussy and extra gassy. After 1 hr of nursing plus feeding formula, by the time he was all burped it was already almost time for him to eat again! It was like around-the-clock feedings.
-He seems to be a very gassy baby in general. We haven't been able to tell if it's due to my breastmilk or to the kind of formula we're feeding him so I started exclusively pumping and giving a bottle of BM for one feeding during the day to see if he got gassier after that vs. formula. But honestly, we still haven't figured it out.
-I am barely producing milk. At this point it seems most women produce at least 60ml (2 oz) per breast during each pumping for a total of 4oz each time - some women much much more. I produce 15-25ml from one breast and <5ml from the other each time I pump (why, I don't know.). That's less than 1oz combined each time (and that's with a hospital-grade pump that I ended up renting since I wasn't sure if the problem was that the Medela PISA I have wasn't strong enough). But Jack eats up to 3.5oz during each feeding so it takes me FOUR pumping sessions just to create enough for one feeding. Doing this has proven to me that even if I were to try every trick in the book to up my supply, it would never be enough to really BF him. That makes me sad but I am also cutting myself some slack. I am unwilling to drive myself crazy trying to make this happen. Currently I still pump enough to give him 1 bottle a day so I am continuing to do that so he gets the antibodies, etc. that formula can't give him. Honestly though, it is really hard. It's almost impossible to find time to pump since I'm the only one here with Jack during the day and choosing pumping over sleeping in the middle of the night makes me so resentful since it's so hard to get sleep as it is. For now though, I'm continuing to do it. I don't know how long I'll keep it up. I really don't think I can for too much longer. I don't know if this means I'm not a good mom since I'm unwilling to do anything and everything possible to make this happen. Logically I know it's not true but emotionally, it's hard. I just try to remind myself that Jack is happy, healthy, and growing and that is what is important.
Other stuff:
I have just about mastered the art of doing EVERYTHING with one hand. Preparing food, grooming myself, eating, laundry, cleaning, peeing... everything. And my left arm is gonna be jacked soon since it is constantly holding the equivalent of a wiggly 10 pound dumbbell.
We have another appointment with the geneticist this afternoon for more tests regarding Jack's dwarfism. There has been no real progress in that department yet. As he's growing a bit I'm starting to see more signs of the dwarfism. His forehead is getting larger and slightly more prominent. I'm hoping it won't turn into hydrocephalus ("water on the brain") but that's a common complication with Achon kiddos. We'll see. Hubs and I (and the doctors) do still think he has Achon, or maybe even Hypochondroplasia, which is very similar to Achondroplasia but is a bit more mild than Achon, but we'll have to see.
As mentioned in the picture write-up, Jack is starting to be able to focus his eyes on things now. Sometimes, that is my face. Those are my absolute favorite times. He'll study my face and I can see him looking at my mouth or nose or hair... It gives me hope that better times are right around the corner (as many of you awesome readers mentioned in comments in my last post - THANK YOU!!). I am feeling so much relief about that. I need to often remind myself during the really hard times that things will NOT always be like this and change for-the-better will be coming soon.
 |
| He slept the whole time. |
It was nice to go out in the world and just be a mom. Finally. It was so different. I had to think about things I've never though about before: The order in which I would take the baby in and out of the car, when and where to put my purse and bags in the car vs. cart, figuring out how to fold up the stroller and fit it in the trunk, parking near the cart return so I could transfer him in his carseat right into the cart... These things seem like minutiae but they're all new to me!
Unfortunately, I did end up overdoing it yesterday and my abdomen/incision area was very sore last night. I was also exhausted by about 8pm (but had to do the night stretch with Jack) so I learned my lesson. Even though I don't want to, I really DO need to force myself to rest more during the day and try to fit in a nap at some point when he's napping so that I can make it through the night shift in one piece.
My 6 week PP checkup with the OB is already next week! When we scheduled it I was still in the hospital and it felt SO far away. It's crazy that it's already almost here. This time since Jack's birth has gone so quick but has also felt so long at the same time. It's hard to explain.
Okay, little man will be waking up soon for another feeding so I should wrap up. I just want to say a HUGE thanks to everyone who commented on my last post. I think you all know me well enough to know that I try to be as frank as possible on this blog and talking about all of that stuff was difficult so I really REALLY appreciate the support. The comments that others have been in this place too was so so helpful to me. THANK YOU <3
Subscribe to:
Posts (Atom)