Awhile back I posted on how upset I was over a comment made about preemie mom blogs. That's such an abbreviated summary of that, but you all remember I'm sure. Anyway, Breech Mama commented on that post and said she was writing on resuscitation. I figured there would be a good place to get my opinions out without the drama associated with the other blog. The computer was having difficulties so it took a little while to show the comments, but eventually they came up.
Basically, my point has been reiterated time and time again about my feelings on resuscitation. However, I feel compelled to stand up to this statement made by Buddhsit Mama in response to HH's comment on the negative affects of NICU treatment.
I have a problem with this statement:
"Many of the parents who have already made the decision to resuscitate at less than 26 weeks and may face poor outcomes are unwilling or unable to look closely at these facts."
Why are we always accused of being oblivious to our own realities?!? And why are we "unwilling to look closely at these facts" because we disagree that our children would be better off dead...or in more neutral terms, we disagree that it would have been better if we opted not to resuscitate?!?
Anyway, here's my response:
***
Buddhist Mama,
I respectfully disagree with your statement:
Many of the parents who have already made the decision to resuscitate at less than 26 weeks and may face poor outcomes are unwilling or unable to look closely at these facts.
I for one am neither unwilling nor unable to look at these facts. These facts were not given in any type of detail or coherent manner when I was in labor at 23.2. There would have been no way to grasp all of this in the state I was in. Now that my decision has been made, my love for my children makes it impossible for me to say I wish I didn't make the decision I did. This does not mean I turn a blind eye to the realities of the treatment they underwent, nor the difficulties they will likely face long term. I am not unwilling nor unable to recognize the trauma that my children went through with intensive NICU treatment; I was there, I lived that reality right along side them. As much as I was more informed than other parents, was I prepared for the NICU? Hell no I wasn't prepared for it. Does this mean I regret my decision and wish my children were dead? No. The love I feel for my children makes it impossible for me to look at statistics and research and wish I had a made another choice. I cannot imagine life without them, and truly believe they deserve to be here.
What it does make me feel is a strong desire for parents to be educated about prematurity and treatment, and to have the information they NEED to make a decision they feel good about. There will always be parents who cannot opt for death regardless of outcomes. The extreme example is pregnant women who know there is something very wrong with their fetus and still opt to carry that child, even if death is inevitable at birth. There will always be parents who opt to utilize the medicine that is available to save their child's life. There will always be parents who believe the price is too high to pay. Either way, those who have made a choice to resuscitate may be very capable of ingesting facts about treatment and outcomes, but who believe their children's lives have value and are forever thankful they made the choice they did. As I'm sure parents who opted not to resuscitate feel when they read facts and feel they saved their child from a terrible existence. After all, I believe one who opted not to save their child would have to believe that their child's life would have been miserable, how else could they live with their decision?
I just have a hard time understanding why parents who opted to save their children are always accused of being naive or "sticking their heads in the sand." We live the realities of our children's lives. Those with motor delays, SPD, eating issues, shunt malfunctions, etc etc, that's right in a parent's face every day of their lives. The affects the vent has had on my son's lungs is evident every time I check his O2 tank and replace his nasal cannula. Every time I give him a puff or he needs steroids for his cold, I'm reminded. Every time my daughter says "ma ma," I hear the affects of her paralyzed vocal cord from her PDA ligation. But every day they smile at me and crawl over to me and reach to be picked up I'm reminded how close I came to never having that experience. Every night I tuck them in and tell them how much I love them I remember the nights I did that in the NICU and wondered if they'd live to see the next day. Yes these children face monstrous obstacles as a result of their prematurity and treatment, please believe many of us are aware of these things and yet still find it in our hearts to love and live by our decisions. And trust me, for me, that is an extremely easy thing to do.
****
I am I crazy or are some people unable to understand that some parents are very capable of loving a child with medical and special needs? Is it so awful that we chose life, even when it took a lot of pain to help that child survive? Do we withhold chemotherapy for children with cancer because it's painful and has side effects? I get it, NICU treatments are often experimental and can have varying long term side effects. Okay, well my other option was my kids were going to die, and sorry if I couldn't consent to that. I didn't try mystical witch medicine to treat my kids. I was at a NICU with a medical staff who treated my premature children. I trusted their expertise and believe they did right by my children. I don't agree Serena and Edwin would be better off dead even knowing the "facts," and this does not make me naive, stupid, or "unwilling to look closely at anything." I look closely at their beautiful faces, and I'll look closely at those for as long as I live.
Ok I'm done venting. Surprisingly I'm not angry this time, just frustrated. I'm frustrated that it is so hard for some to understand why we chose life for our kids, and why we are thankful for their survival.
Please make sure you look at the pics of the kids in the previous post...I hate to take away from those, but this blog is my therapy and I had to address these things tonight.
Friday, November 30, 2007
Thursday, November 29, 2007
Neurology
Here are some cute pics of the kids from the past week. Grammy took them while I was at work. See how happy they are when she babysits :)
CHEESE!!!
For all the months you crawled over me...NOW it's MY turn!
My handsome guy
I love his half smile!
Look at my boy's progress!!!!!
What a beauty
This picture looks JUST like me when I was her age! (minus the nose...she has Daddy's nose.)
Soooo happy!
Hi all...
Today S&E had their first, and hopefully last, neurology appointment. Things went well. I had heard somethings about the Dr., but I liked him and he was VERY nice to us and very helpful in answering my questions.
So first the numbers:
Edwin: weight 18 pounds 12.8 ounces. Length 29" Head circumference: 17.2"
Serena: weight 17 pounds 8.2 ounces. Length 27.2" HS: 16.5"
The neurologist looked at Edwin first and felt his tone and his reflexes. He was very impressed with Edwin and said he looked good, and better than he had expected. He said Edwin has transient dystonia, basically meaning he has low tone in some areas (trunk) and extensor tone (in his back.) By definition this will resolve and the neuro said that EJ will pull to stand and walk, but will walk late. He checked his reflexes in his feet, ankles, knees, shins, etc and said everything is normal. He said there is no reason for a CP diagnosis at this time and believes it is truly transient dystonia. He said continue with PT and we're all set. He said his nystagmus was nothing to be concerned about and is sensory in nature and not worrisome. He said we would only need to come back if God forbid they begin having seizures or anything neurological.
Serena was fine of course, we didn't have questions about her tone, but rather her head circumference. The neuro said he'd like to see both kids have larger head circumferences but said it wasn't the end of the world and there was no reason for an MRI for either child.
So all in all it was a good visit. Thank goodness because I had a terrible day at work on Wednesday and I was worried the visit would set me over the edge. Thankfully everything went well.
CHEESE!!!
For all the months you crawled over me...NOW it's MY turn!
My handsome guy
I love his half smile!
Look at my boy's progress!!!!!
What a beauty
This picture looks JUST like me when I was her age! (minus the nose...she has Daddy's nose.)
Soooo happy!
Hi all...
Today S&E had their first, and hopefully last, neurology appointment. Things went well. I had heard somethings about the Dr., but I liked him and he was VERY nice to us and very helpful in answering my questions.
So first the numbers:
Edwin: weight 18 pounds 12.8 ounces. Length 29" Head circumference: 17.2"
Serena: weight 17 pounds 8.2 ounces. Length 27.2" HS: 16.5"
The neurologist looked at Edwin first and felt his tone and his reflexes. He was very impressed with Edwin and said he looked good, and better than he had expected. He said Edwin has transient dystonia, basically meaning he has low tone in some areas (trunk) and extensor tone (in his back.) By definition this will resolve and the neuro said that EJ will pull to stand and walk, but will walk late. He checked his reflexes in his feet, ankles, knees, shins, etc and said everything is normal. He said there is no reason for a CP diagnosis at this time and believes it is truly transient dystonia. He said continue with PT and we're all set. He said his nystagmus was nothing to be concerned about and is sensory in nature and not worrisome. He said we would only need to come back if God forbid they begin having seizures or anything neurological.
Serena was fine of course, we didn't have questions about her tone, but rather her head circumference. The neuro said he'd like to see both kids have larger head circumferences but said it wasn't the end of the world and there was no reason for an MRI for either child.
So all in all it was a good visit. Thank goodness because I had a terrible day at work on Wednesday and I was worried the visit would set me over the edge. Thankfully everything went well.
Tuesday, November 27, 2007
Nasal intubaion vs oral...EDITED
I said I was going to post about this topic, and the more I read our fellow preemie blogs, the more important I've realized it's become.
So many of our preemie peers suffer with oral aversion, difficulty eating, avoidance of certain textures, and vomiting. It makes weight gain and eating exceptionally stressful for parents. My heart goes out to you all.
Serena and Edwin have no eating difficulties whatsoever. They eat almost everything, and I am not exaggerating here. On Thanksgiving there was almost nothing they didn't eat (broccoli casserole was their favorite Thanksgiving dish...I made it :)
I think about how fun feeding time is for myself, Edwin, and the kids, and I feel so sad that this is a time of stress and sadness for many of our preemie friends.
I can't help but think back to the NICU days. Serena and EJ were almost always nasally intubated. First, the nurses felt the tube had less "play" in the nostril as opposed to the mouth. Secondly, we were told studies showed a decreased occurance of oral aversion with preemies who were nasally intubated than those who were orally intubated, and it makes sense. The only affect is Serena's dialated nostril...a small price to pay for escaping with no feeding issues.
The BIG hospital in the capital of our state removed Edwin's nasal intubation and intubated him orally when he was transported for his PDA ligation...upon return to our NICU it was replaced with a nasal intubation...it is a hospital/nurse's preference and many hospitals simply do not intubate nasally. A major risk can be a deviated septum and perhaps this is the reluctance?
I wonder what other preemies experienced in the NICU? Was your child nasally intubated? How is his/her feeding? I wonder if things could improve for future preemies if more hospitals tried nasal intubation. Or perhaps there is no correlation and we are just lucky in this area of preemie-related issues.
There's a good convo going on on Preemie Mom Blogs about this for anyone interested...
So many of our preemie peers suffer with oral aversion, difficulty eating, avoidance of certain textures, and vomiting. It makes weight gain and eating exceptionally stressful for parents. My heart goes out to you all.
Serena and Edwin have no eating difficulties whatsoever. They eat almost everything, and I am not exaggerating here. On Thanksgiving there was almost nothing they didn't eat (broccoli casserole was their favorite Thanksgiving dish...I made it :)
I think about how fun feeding time is for myself, Edwin, and the kids, and I feel so sad that this is a time of stress and sadness for many of our preemie friends.
I can't help but think back to the NICU days. Serena and EJ were almost always nasally intubated. First, the nurses felt the tube had less "play" in the nostril as opposed to the mouth. Secondly, we were told studies showed a decreased occurance of oral aversion with preemies who were nasally intubated than those who were orally intubated, and it makes sense. The only affect is Serena's dialated nostril...a small price to pay for escaping with no feeding issues.
The BIG hospital in the capital of our state removed Edwin's nasal intubation and intubated him orally when he was transported for his PDA ligation...upon return to our NICU it was replaced with a nasal intubation...it is a hospital/nurse's preference and many hospitals simply do not intubate nasally. A major risk can be a deviated septum and perhaps this is the reluctance?
I wonder what other preemies experienced in the NICU? Was your child nasally intubated? How is his/her feeding? I wonder if things could improve for future preemies if more hospitals tried nasal intubation. Or perhaps there is no correlation and we are just lucky in this area of preemie-related issues.
There's a good convo going on on Preemie Mom Blogs about this for anyone interested...
Friday, November 23, 2007
Just 3 of my favorite people
This is a picture I took when Edwin came home from his Colorado Police charity boxing trip (notice the "boo boo" on the bridge of his nose, don't worry he won the fight.) EJ was soooo excited to see his Dad, it actually surprised me. Of course to make Daddy feel better I would have pointed out how much they missed him, but this was different. EJ was ecstatic to see his Dad. They have this really special bond, and EJ had gone almost all week without saying "da da" (which both my mom and I noticed...I just thought he was getting sick of that word) but as soon as Edwin walked in the door last Sunday, EJ hasn't stopped saying "da da" since. It's so special to see them together. Of course Serena is Daddy's girl, and she was excited to see Daddy as well.
I just love these three soooo much!
Wednesday, November 21, 2007
Sunday, November 18, 2007
Edwin sitting and crawling
Since my mom has been here helping with Edwin and Serena while Daddy has been in Colorado boxing, I have been able to capture some exciting moments on video. I posted Serena saying "ma ma" last night, and today here is Edwin practicing his sitting and getting on his knees to inch worm. As I posted the other day, he has been sitting for much longer periods...up to one minute without any repositioning, but here he was too interested in Grammy so he kept trying to turn around. The best way to get his to sit for long periods is for me to sit behind his to position him (I have a good feel for where his hands need to be for the best support) and for someone to sit in front of him and sing to him. Holding a toy will only cause him to take his hands off of the floor which causes him to lose balance. But here I was videotaping so he was a little more distracted and trying to turn around since I wasn't entertaining him enough. Anyway, you'll get the idea of what he's doing when you watch it. If you watched the video of him "crawling" a couple of weeks ago, you will see the progress he is making as he is now getting up on his knees more. In the second part of the video you'll see he does more rocking on his knees and forearms, (he is still resting on his forearms most of the time." You'll also see that he is saying "mmmmmm" but still no "ma ma."
I'm so thankful I have this video camera to capture all of these things.
These kids have come a LONG way from this time last year and I am sooo proud!
I'm so thankful I have this video camera to capture all of these things.
These kids have come a LONG way from this time last year and I am sooo proud!
Saturday, November 17, 2007
A new word...****Edited with video****
A HUGE milestone today!!!!! Serena said Ma ma, and said it quite a few times throughout the day. Of course she has no idea that that is MY name, but I have been practicing "Ma ma" with her and Edwin a lot. It's only fair, EJ says Da da and Daddy and Serena says Ma ma.
***Edited*** I caught it on video after I created this post. It's short this time...check it out!!!!
Here are some pictures of them right after dinner with messy faces (Grammy and I thought we washed them, but when uploading the pics I noticed Serena was saving some up by her eyebrow) and Edwin's messy cannula and messy tape (we now have to use the cannulas sparingly because our O2 company said they no longer have intermediate infant sizes...infant is too small and pediatric is way too big...they're looking into it. As for now, my guy has to wear a cannula stained orange from his carrot and veggies dinner tonight)...still so cute!
***Edited*** I caught it on video after I created this post. It's short this time...check it out!!!!
Here are some pictures of them right after dinner with messy faces (Grammy and I thought we washed them, but when uploading the pics I noticed Serena was saving some up by her eyebrow) and Edwin's messy cannula and messy tape (we now have to use the cannulas sparingly because our O2 company said they no longer have intermediate infant sizes...infant is too small and pediatric is way too big...they're looking into it. As for now, my guy has to wear a cannula stained orange from his carrot and veggies dinner tonight)...still so cute!
Friday, November 16, 2007
Sicky....but getting better?
Hi all...
Thanks for your kind healing thoughts for EJ. Of course he shared with Beanie and Mommy and all three of us are sick. Daddy is in Colorado with the Police Dept boxing so he was spared the germies. Both kids are on an oral steroid until Monday morning. I think it's helping. They are eating well (especially Serena...go figure) and are playing and still smiling, even if they are throwing up sometimes after a coughing episode.
EI came today and Edwin had a record best of nearly a minute sitting unassisted. His hands were on the floor to help keep his balance, but hands off from Mommy and the therapist. I was so proud of him! He even corrected his balance himself when he started to fall over to one side. He is making slow but steady progress. I didn't think he'd be able to do much this week being sick and all, but he is still tolerating his exercises and is doing great with sitting. Once I have someone here to video tape I'll post his progress in the sitting department. We've got a long ways to go before he can sit without his hands propping him, but he is coming along.
Other than that, we're hanging in there. I know Abby tagged me for the Meme seven thingy, but I'll have to get to that when the kids are asleep tonight, if I don't fall asleep right away that is!
Thanks for your kind healing thoughts for EJ. Of course he shared with Beanie and Mommy and all three of us are sick. Daddy is in Colorado with the Police Dept boxing so he was spared the germies. Both kids are on an oral steroid until Monday morning. I think it's helping. They are eating well (especially Serena...go figure) and are playing and still smiling, even if they are throwing up sometimes after a coughing episode.
EI came today and Edwin had a record best of nearly a minute sitting unassisted. His hands were on the floor to help keep his balance, but hands off from Mommy and the therapist. I was so proud of him! He even corrected his balance himself when he started to fall over to one side. He is making slow but steady progress. I didn't think he'd be able to do much this week being sick and all, but he is still tolerating his exercises and is doing great with sitting. Once I have someone here to video tape I'll post his progress in the sitting department. We've got a long ways to go before he can sit without his hands propping him, but he is coming along.
Other than that, we're hanging in there. I know Abby tagged me for the Meme seven thingy, but I'll have to get to that when the kids are asleep tonight, if I don't fall asleep right away that is!
Tuesday, November 13, 2007
Healing thoughts please
My little guy is sick. It started with a runny nose yesterday morning and has turned into congestion, mucous build up, vomiting, slight fever, and unrelenting (last night) coughing. Post nasal drip really bothers my Edwin and it causes him to throw up a lot. He gets coughing and coughing and out it comes...and he was eating sooo well before yesterday.
So we're off to the pulmonologist at noon and back to trying neb treatments, 2 puffs of Flovent, Tylenol for the fever, and up to 300ccs of O2...we were on 150... :( Healing thoughts for Edwin and Serena (they love each other and it's tough to keep one healthy when the other is sick) and pray we do not land in the PICU and this is just a cold that will pass.
We have his RSV shot the Wednesday before Thanksgiving and of course plans for Thanksgiving. We want a healthy family this year, last year we didn't celebrate any holidays because they were in such critical condition.
Oh how I wish they didn' get sick so easily and I wish it didn't hit them as hard.
***Update***No puke since breakfast, which means he held down lunch, dinner, and the bottles and snacks in between. He's in bed now and I am hoping he doesn't have post nasal drip that gets him coughing/gagging/puking. I'm keeping him on 300ccs and his sats are 97 and above. I'll wean him back down to 150 if he appears better in a few days. Bad news is we had to cancel PT this morning, but EI comes Friday so we can do more then. Yesterday he was on his hands and knees (I think still resting on at least one forearm though) and stayed in that position for 5-10 seconds. This was AMAZING to me and I almost cried a little. I hope this sickness isn't a huge setback development, strength, and O2 wise. Keep the healing thoughts coming our way!
Oh yeah, and he weighed 18 2.2 today and was 29" long...and this is after he puked three times last night and all of his breakfast this am.
So we're off to the pulmonologist at noon and back to trying neb treatments, 2 puffs of Flovent, Tylenol for the fever, and up to 300ccs of O2...we were on 150... :( Healing thoughts for Edwin and Serena (they love each other and it's tough to keep one healthy when the other is sick) and pray we do not land in the PICU and this is just a cold that will pass.
We have his RSV shot the Wednesday before Thanksgiving and of course plans for Thanksgiving. We want a healthy family this year, last year we didn't celebrate any holidays because they were in such critical condition.
Oh how I wish they didn' get sick so easily and I wish it didn't hit them as hard.
***Update***No puke since breakfast, which means he held down lunch, dinner, and the bottles and snacks in between. He's in bed now and I am hoping he doesn't have post nasal drip that gets him coughing/gagging/puking. I'm keeping him on 300ccs and his sats are 97 and above. I'll wean him back down to 150 if he appears better in a few days. Bad news is we had to cancel PT this morning, but EI comes Friday so we can do more then. Yesterday he was on his hands and knees (I think still resting on at least one forearm though) and stayed in that position for 5-10 seconds. This was AMAZING to me and I almost cried a little. I hope this sickness isn't a huge setback development, strength, and O2 wise. Keep the healing thoughts coming our way!
Oh yeah, and he weighed 18 2.2 today and was 29" long...and this is after he puked three times last night and all of his breakfast this am.
Sunday, November 11, 2007
Serena and Edwin,Jr. Everywhere!!!!
Thanks all for your input and support on my last post.
This is not an attempt to be creative or artistic, rather, this is what happens when your kids don't want to sit still for a picture.
Aren't they gorgeous???
Exciting news:
Serena is making a "fa" sound after all. She did it a bunch of times today and it was so cute. A month ago I used to think she babbled, but before it was more exploring her voice. She is now using her mouth in more effective ways to truly babble and explore specific sounds. I'm very impressed with her progress even before ST has begun. I can only hope for even more progress then, and a better understanding if anything will need to be done after her bronchoscopy in January. She still needs O2 when in a deep sleep so in that sense I don't think her airway has drastically changed since July. I think her vocal cord is more affected than other kiddos with a paralyzed vocal cords because her voice is so raspy. However, when she whispers it sounds a lot different. It'll be interesting to talk with the ENT in more detail to understand this paralyzed vocal cord phenomenon that affects some preemies who've had their PDA ligated.
This is not an attempt to be creative or artistic, rather, this is what happens when your kids don't want to sit still for a picture.
Aren't they gorgeous???
Exciting news:
Serena is making a "fa" sound after all. She did it a bunch of times today and it was so cute. A month ago I used to think she babbled, but before it was more exploring her voice. She is now using her mouth in more effective ways to truly babble and explore specific sounds. I'm very impressed with her progress even before ST has begun. I can only hope for even more progress then, and a better understanding if anything will need to be done after her bronchoscopy in January. She still needs O2 when in a deep sleep so in that sense I don't think her airway has drastically changed since July. I think her vocal cord is more affected than other kiddos with a paralyzed vocal cords because her voice is so raspy. However, when she whispers it sounds a lot different. It'll be interesting to talk with the ENT in more detail to understand this paralyzed vocal cord phenomenon that affects some preemies who've had their PDA ligated.
Saturday, November 10, 2007
The break up
Warning my mom, friends and family who read this blog...this is about my virtual life (lol) and is not directly about S&E today, it may be boring/confusing so feel free to stop reading here.
It's like I just ended a toxic relationship, and it feels great...lol.
I have received comments and emails of support with regard to the ongoing debates over at TPE. Thanks for those.
But I decided things were getting too toxic when one reader wrote: (she is referring to preemie mom blogs here):
"Most of the crop of bloggers kids are <3 with H&E [Holland & Eden] being the exception. Perhaps the future isnt something they want to look at daily. The common posters here all for the most part have older kids and it may not be something that bloggers with younger kids want to confront/see.
Most of the preemie blogs I read, the parents all think "they" are the exception. One day this will all be a memory and their kids wont be impacted. Hard to keep thinking that when helen and others show you those darn bothersome statistics.
I also agree with C&V when she said that alot of times we as parents, caregivers etc assign value, etc to our kids lives because it makes US feel better."
Ok, so I didn't even respond to that, I think I physically shook with anger and I knew I would end up writing something really nasty, but thankfully Jennifer (Arianna's mom http://mailin2.blogspot.com/) did a great job responding. It was at this point that the wheels started turning...why do I keep trying to defend myself and attempt to defend the other moms who I have come to know through the blog world, who are most certainly NOT "sticking their heads in the sand" but who refuse to live in the "doom and gloom" world of some of the moms who comment on TPE?
I was getting so angry at the way people talked about preemies 'damaged fetuses that nature meant to abort', and their own special needs kids. It's like because we don't think our lives are terrible, 1.) we are in denial or covering up for some underlying guilt we feel. 2.) We will feel miserable once are kids are older and at that point we'll reach out to Helen and others. If you read there you'll know what I mean. These are ever present in nearly every post...except for the posts about the author's daughter accomplishing something positive, then these miserable ones don't have much, if anything to say.
So after reading the garbage and the claims from Helen that once our preemies got older we would realize how right she was to wish her child was dead, (rough translation here, but she's literally said she wishes he had died and claims that he would chose no life over his current one), I said to myself, "what are you getting out of this blog anyway?" Even Edwin who usually isn't too interested in what I do online unless it's a video or pics of the kids said "why do you go to that stupid blog?" Once in awhile it had some useful info that I stored away for the future just in case, and often I felt passionate enough to try and get these people to understand someone else's perspective, but it is to no avail. I am dismissed as a "new mom" whose children are too young to say they are doing well, and in 10 years I'll be right with "them." So I'm all done arguing with people who clearly have the opposite idea from me of what it means to be a parent. I will never "change" them and they will never come to a place of acceptance, and I finally see that. So thank you for all your support, but there will be no rebuttal from me.
My last comment was pretty funny and actually caused the blog author to disable comments because I was "getting off topic." But it's ok when people post comments like the one I copied above. I wasn't going to go back because if "they" responded it might compel me to defend myself, but I needed to copy and paste these comments. I won't go back again so I never feel it necessary to tell them off again. Here is my final ado for those of you who want a good laugh:
"I've decided participating here is useless. I have a good basis for what to expect in the future, and thanks to the many preemie mom blogs that talk about the REALITIES of their every day lives, I am equipped with much more useful information than I find here. Statistics are one thing, reading about parents going through these experiences in every day life is much more helpful to me.
So you can accuse me of "putting my head in the sand" because I'm yet another "new mom" who doesn't want to hear some of you moms talk about how much your lives suck anymore. It's actually kind of toxic to hear how miserable you are. I guess this means I'm in denial, huh?
And don't hold your breath Helen, I won't be emailing you in 10, 15, 20, or however many years. You'll never win me over to "the dark side.""
Just think, if we all stop reading and commenting what will they say? They live for the conflict of trying to convince "new moms of preemies" that we don't know anything and our blogs are lies about our lives because we call our children miracles. We talk about the good, the bad, and the ugly. People take pictures of vomit for goodness sake. Anyway, the defense of my children and how amazing they are is chronicled almost daily here, so I feel I'm still doing my duty as a mom who believes her children's lives have value (and no I don't place value on my kid's lives so I can feel better...what an idiot).
(I have a feeling they may comment on this blog...because for some reason they actually come over to my blog and read about my "miracles." Remember Helen's eager comment to "help" the new 23 week mom? Anyway, just ignore them, and if you or I find it offensive and I'll delete it when I see it. This is MY space and I don't invite filth here.)
It's like I just ended a toxic relationship, and it feels great...lol.
I have received comments and emails of support with regard to the ongoing debates over at TPE. Thanks for those.
But I decided things were getting too toxic when one reader wrote: (she is referring to preemie mom blogs here):
"Most of the crop of bloggers kids are <3 with H&E [Holland & Eden] being the exception. Perhaps the future isnt something they want to look at daily. The common posters here all for the most part have older kids and it may not be something that bloggers with younger kids want to confront/see.
Most of the preemie blogs I read, the parents all think "they" are the exception. One day this will all be a memory and their kids wont be impacted. Hard to keep thinking that when helen and others show you those darn bothersome statistics.
I also agree with C&V when she said that alot of times we as parents, caregivers etc assign value, etc to our kids lives because it makes US feel better."
Ok, so I didn't even respond to that, I think I physically shook with anger and I knew I would end up writing something really nasty, but thankfully Jennifer (Arianna's mom http://mailin2.blogspot.com/) did a great job responding. It was at this point that the wheels started turning...why do I keep trying to defend myself and attempt to defend the other moms who I have come to know through the blog world, who are most certainly NOT "sticking their heads in the sand" but who refuse to live in the "doom and gloom" world of some of the moms who comment on TPE?
I was getting so angry at the way people talked about preemies 'damaged fetuses that nature meant to abort', and their own special needs kids. It's like because we don't think our lives are terrible, 1.) we are in denial or covering up for some underlying guilt we feel. 2.) We will feel miserable once are kids are older and at that point we'll reach out to Helen and others. If you read there you'll know what I mean. These are ever present in nearly every post...except for the posts about the author's daughter accomplishing something positive, then these miserable ones don't have much, if anything to say.
So after reading the garbage and the claims from Helen that once our preemies got older we would realize how right she was to wish her child was dead, (rough translation here, but she's literally said she wishes he had died and claims that he would chose no life over his current one), I said to myself, "what are you getting out of this blog anyway?" Even Edwin who usually isn't too interested in what I do online unless it's a video or pics of the kids said "why do you go to that stupid blog?" Once in awhile it had some useful info that I stored away for the future just in case, and often I felt passionate enough to try and get these people to understand someone else's perspective, but it is to no avail. I am dismissed as a "new mom" whose children are too young to say they are doing well, and in 10 years I'll be right with "them." So I'm all done arguing with people who clearly have the opposite idea from me of what it means to be a parent. I will never "change" them and they will never come to a place of acceptance, and I finally see that. So thank you for all your support, but there will be no rebuttal from me.
My last comment was pretty funny and actually caused the blog author to disable comments because I was "getting off topic." But it's ok when people post comments like the one I copied above. I wasn't going to go back because if "they" responded it might compel me to defend myself, but I needed to copy and paste these comments. I won't go back again so I never feel it necessary to tell them off again. Here is my final ado for those of you who want a good laugh:
"I've decided participating here is useless. I have a good basis for what to expect in the future, and thanks to the many preemie mom blogs that talk about the REALITIES of their every day lives, I am equipped with much more useful information than I find here. Statistics are one thing, reading about parents going through these experiences in every day life is much more helpful to me.
So you can accuse me of "putting my head in the sand" because I'm yet another "new mom" who doesn't want to hear some of you moms talk about how much your lives suck anymore. It's actually kind of toxic to hear how miserable you are. I guess this means I'm in denial, huh?
And don't hold your breath Helen, I won't be emailing you in 10, 15, 20, or however many years. You'll never win me over to "the dark side.""
Just think, if we all stop reading and commenting what will they say? They live for the conflict of trying to convince "new moms of preemies" that we don't know anything and our blogs are lies about our lives because we call our children miracles. We talk about the good, the bad, and the ugly. People take pictures of vomit for goodness sake. Anyway, the defense of my children and how amazing they are is chronicled almost daily here, so I feel I'm still doing my duty as a mom who believes her children's lives have value (and no I don't place value on my kid's lives so I can feel better...what an idiot).
(I have a feeling they may comment on this blog...because for some reason they actually come over to my blog and read about my "miracles." Remember Helen's eager comment to "help" the new 23 week mom? Anyway, just ignore them, and if you or I find it offensive and I'll delete it when I see it. This is MY space and I don't invite filth here.)
Friday, November 9, 2007
Edwin's PT appointment and such
Hey there...
Man I've been busy fighting against negativity. It's refreshing to come back to my blog and write about my Serena and Edwin.
So PT came yesterday, and without me even having to ask, she said she would be coming weekly...great news.
So, PT saw the concerns I was having about Edwin's lack of sitting. Lately he has been arching backward in the typical "preemie extension." He'd rather stand, and is not comfortable being "rounded" in a sitting position. The reason for this PT explained was because he has poor range of motion in his back and in his neck. Because of the "preemie extension" his muscles are too tight in the extended position, and he needs to loosen them. So we have 2 new exercises that he is tolerating well so far. The first one involves putting one hand on his upper chest (rib cage) while he is on his back and taking your other hand and lifting his pelvis up and hold for 30 seconds...something typical developing does on their own say when they are on their backs and put their feet in their mouths. Edwin needs to get into this position frequently to help with his range of motion. I have already seen an improvement in his sitting. Just this morning I did his exercise and then put him in a sitting position, he sat longer and with more trunk control than previous. If he arches and straightens his trunk, we are not to give resistance back, this only enforces the extension. Instead we wait for him to get out of that position (he usually does it so he can stop sitting and get back to tummy time), we hold his belly and support his back while he uses his belly muscles to sit up. The other exercise involves us bringing his chin to his chest while we drop our leg so his legs are slightly above his head...that might not make sense but I'll video tape us doing his exercises so you know what I mean. This will help with the tight muscles in his neck that have developed as a resulting of the extending he has been doing.
Now told us she believes this is preemie extension, but their is a chance it is CP. Either way, these exercises will help him with his range of motion and trunk control and she expects him to sit and crawl appropriately with time. If it's preemie extension we should see quicker results, if it's CP it will take longer. Either way I feel good about having exercises to help EJ that we all can do with him multiple times per day. And now that PT is coming weekly and we still have EI to reinforce these exercises also coming weekly, I'm hoping to see EJ getting stronger soon.
In other news things are going well with eating, although EJ has been throwing up sometimes. Nothing like when we first came home, but since we reintroduced Zantac again I'm wondering if the two are related, or if it's just coincidence. I'm keeping an eye on it. In the one sense he still refluxes even without the vomit, and I don't want it to be painful for him, on the other hand I hate when he "loses his lunch" so I'll have to gage it over the next couple of weeks.
They are both eating everything I try with them, for which I know we are so lucky. I'm wondering about white fish (not shell fish) and am unsure when I should introduce that. Yes, they are 9 months adjusted age, but they have been digesting food for over a year and they do great with eggs (one of their favorites) so I'm not sure. I'm waiting on peanut butter though just because peanut allergies scare me.
Serena is babbling more and more and seems so proud of herself when she copies the sounds I make. I think she made a "da da" noise but I'm not certain. She is going through separation anxiety, although she is currently playing with her brother on the floor and is ok with the fact I'm not right there with her. It gets worse when she is tired. I have to put her in her high chair in the bathroom with me when Edwin Sr. isn't here and I have to take a shower. She's so sweet, I can't deny that I love her wanting me so much especially since we were separated far too soon with their early birth and 4 months in the NICU. When someone else holds her and she stretches out and reaches to me it really melts my heart. Edwin has also started to consistently reach for us and when he combat crawls and we are sitting on the floor he comes right over and lifts his hand which means "pick me up." It's adorable.
The pictures are from my cousin's wedding. They looked soo cute and I'm so mad at myself for not taking more pictures. The photographer took some as well as the fam so hopefully I can get my hands on them. Here are the only ones I have :(
Man I've been busy fighting against negativity. It's refreshing to come back to my blog and write about my Serena and Edwin.
So PT came yesterday, and without me even having to ask, she said she would be coming weekly...great news.
So, PT saw the concerns I was having about Edwin's lack of sitting. Lately he has been arching backward in the typical "preemie extension." He'd rather stand, and is not comfortable being "rounded" in a sitting position. The reason for this PT explained was because he has poor range of motion in his back and in his neck. Because of the "preemie extension" his muscles are too tight in the extended position, and he needs to loosen them. So we have 2 new exercises that he is tolerating well so far. The first one involves putting one hand on his upper chest (rib cage) while he is on his back and taking your other hand and lifting his pelvis up and hold for 30 seconds...something typical developing does on their own say when they are on their backs and put their feet in their mouths. Edwin needs to get into this position frequently to help with his range of motion. I have already seen an improvement in his sitting. Just this morning I did his exercise and then put him in a sitting position, he sat longer and with more trunk control than previous. If he arches and straightens his trunk, we are not to give resistance back, this only enforces the extension. Instead we wait for him to get out of that position (he usually does it so he can stop sitting and get back to tummy time), we hold his belly and support his back while he uses his belly muscles to sit up. The other exercise involves us bringing his chin to his chest while we drop our leg so his legs are slightly above his head...that might not make sense but I'll video tape us doing his exercises so you know what I mean. This will help with the tight muscles in his neck that have developed as a resulting of the extending he has been doing.
Now told us she believes this is preemie extension, but their is a chance it is CP. Either way, these exercises will help him with his range of motion and trunk control and she expects him to sit and crawl appropriately with time. If it's preemie extension we should see quicker results, if it's CP it will take longer. Either way I feel good about having exercises to help EJ that we all can do with him multiple times per day. And now that PT is coming weekly and we still have EI to reinforce these exercises also coming weekly, I'm hoping to see EJ getting stronger soon.
In other news things are going well with eating, although EJ has been throwing up sometimes. Nothing like when we first came home, but since we reintroduced Zantac again I'm wondering if the two are related, or if it's just coincidence. I'm keeping an eye on it. In the one sense he still refluxes even without the vomit, and I don't want it to be painful for him, on the other hand I hate when he "loses his lunch" so I'll have to gage it over the next couple of weeks.
They are both eating everything I try with them, for which I know we are so lucky. I'm wondering about white fish (not shell fish) and am unsure when I should introduce that. Yes, they are 9 months adjusted age, but they have been digesting food for over a year and they do great with eggs (one of their favorites) so I'm not sure. I'm waiting on peanut butter though just because peanut allergies scare me.
Serena is babbling more and more and seems so proud of herself when she copies the sounds I make. I think she made a "da da" noise but I'm not certain. She is going through separation anxiety, although she is currently playing with her brother on the floor and is ok with the fact I'm not right there with her. It gets worse when she is tired. I have to put her in her high chair in the bathroom with me when Edwin Sr. isn't here and I have to take a shower. She's so sweet, I can't deny that I love her wanting me so much especially since we were separated far too soon with their early birth and 4 months in the NICU. When someone else holds her and she stretches out and reaches to me it really melts my heart. Edwin has also started to consistently reach for us and when he combat crawls and we are sitting on the floor he comes right over and lifts his hand which means "pick me up." It's adorable.
The pictures are from my cousin's wedding. They looked soo cute and I'm so mad at myself for not taking more pictures. The photographer took some as well as the fam so hopefully I can get my hands on them. Here are the only ones I have :(
Wednesday, November 7, 2007
Wordless Wednesday...Video post
Video of Edwin making some progress in the inchworm/combat crawling, Serena needs Mumma when she's tired, and more Serena "talking."
Enjoy!
Enjoy!
Sunday, November 4, 2007
What does the future hold?
Hey there...
So here I'm doing more today than posting pics of my little ones and talking about the new cute things they are doing.
I received an email from a woman who has a newborn 23.5 weeker. Someone emailed her my blog, which was so touching because this is part of why I post (also to update the fam and friends.)
Of course she is at the place that so many of us were...your child was born way too soon, you are bombarded with information, statistics, and decisions to be made. It's a whirlwind of emotions, still too painful for me to think about without crying. I wouldn't wish the experience on anyone, and my heart goes out to EACH and EVERY family who is undergoing that pain or has in the past.
One of the biggest concerns (other than the fact that your child can't breathe, is desatting and having bradys to the point that they have to manual bag them several times a day) is what is the long term outcome for my child/ren and what affect does all of this have on their brain? I remember trying so hard NOT to think about this, but I can't deny it was the ever lurking thought that would sneak its way in numerous times per day. How are other kids born as early as mine doing? Will they be those miracle children? Will they defy all odds? What if I have two children who can't walk, talk, or self feed? How will I manage that? Am I strong enough to do that?
I have come to a totally different place now. I read a lot, and thanks to the many blogs I found, I realize one thing that I've come to accept. My children will never be "normal." They will always be affected in some way by their early birth. They get sicker easier than others and it hits them harder. Serena's voice will probably always be affected by her paralyzed vocal cord. EJ might not have the most finesse of all his peers. I don't even know how he will do motor wise even though his pedi tells me he will walk and do all these things in time, but no one knows this for certain; and you know what? That's ok. It's okay that when they are around other 9 month olds I can see the difference in development, size, and head shape/size. It doesn't matter that I may have to help them with many things including school work. I accept the fact that this is not a typical journey through parenthood, where your child hits their milestones on time and develops like a typical child their age. My life won't be about the typical because there is nothing typical about having your children leave your womb at only 23.5 weeks. It's unnatural and pretty damn unfair in my opinion, but I accept it's my reality, and as much as I wish my children could have had their full 40 weeks, it wasn't the case and here I am today with two beautiful children who weren't expected to survive. So how can you tell me my life is doomed to be miserable? (reference people who don't believe in resuscitation at my kid's gestation.) My life won't be miserable because I am THANKFUL for the lives of my children. I am GRATEFUL that neonatology saved their lives. And NO I don't want my children to experience pain or suffering, but because we love them and parent them in a loving and nurturing way, I believe we will get through any obstacle because that's our job as their parents. No, don't get me confused, I'm not saying we can "cure" our kids with love, but what I am saying is we'll get through the tough times and do what we can as parents to manage our children's care and lives in the best way possible.
My heart goes out to this new mom who is searching for answers and trying to find SOMEONE out there who has been through this and understands. I can't predict the future, just like the NICU team can't, but what I do know is that the kids who "on paper" appear to have the significant to severe disabilities, that I admittedly was so afraid of, are happy, loved, and amazing.
New moms want to know the experience of others so they feel less alone. They want to prepare themselves for what lies ahead. Even strangers wonder, and I have had a couple of people ask about the babies (they see the nasal cannula on EJ). I explain they were born at only 23 weeks gestation and sometimes people ask about their long term outcomes. When they say "oh they'll catch up though." I say "no, probably not." I say, "they will always be affected by their early birth in some way and I am ok with that; I am thankful they are alive." Someone else asked if they would have "problems with development" because they were born early and I say "yes, they are delayed." I am in no way ashamed of my children and see no reason to sugar coat things to make the public feel more comfortable. I don't NEED to know about their cousin's next door neighbor who was only a pound at birth and who is graduating from college. That's wonderful, but I don't NEED that reassurance to tell me everything will be fine, because I'm ok with the fact that our journey will be atypical.
One thing that this new mom is questioning is brain bleeds. Serena had a bilateral grade II with what appeared to be a cyst-like image that didn't go away, so they predicted that it was NOT artifact. I don't know what it was, I had convinced myself it was PVL, and still might be, who knows. EJ had what was first deemed a grade II bleed, but then the next ultrasound tech said grade I. I don't know much about how a bleed affects a child long term unless it is a large bleed with hydrocephalus...in that case I know sometimes shunts are needed, and it can affect development. But I have come to realize is that simply being born at 23,24,25,26 weeks affects development regardless of a head ultrasound. We need to abandon this notion that everything will be ok. And what is "ok" anyway? Some kids have extreme difficulty eating and oral aversion and reflux and this is life altering for the family. They can walk and talk, but let's not minimize what they deal with. There are varying issues we deal with as parents of preemies and many of us found out about them by reading other's experiences, not from what is written in books, at least not much. There was very little written about babies born at 23 weeks, because let's be honest, how many years have babies born at this gestation been routinely resuscitated? Even today there is still a CHOICE about resuscitation at 23 weeks at our NICU and many others. The information I gathered was from blogs, and it has been a saving grace.
So, if you'd like share your story with this new mom who will be reading this post and for the many others out there who are just coming into their NICU experience and just finding the blog world, please comment.
If it's a lot to write about in a comment and you would be willing to provide info and support through private email, feel free to just comment your email address or website.
Thanks!!!
Just a reminder. In my January 2006 archives one post "101 days recap" does include my almost daily journal of what the twins went through from birth to January. I then found blogger and began posting here. But I do have all the details in journal form on that post.
Here's our *abbreviated* story:
I went into a routine ultrasound appointment at 23.2 weeks gestation. Found that my cervix was shortened and I was funneling. Admitted to L&D, given the 48 hours worth of steroids. 3 centimeters dilated upon admission. Given oral med to stop contractions (I forget the name). Never received mag. because they believed I was staying at 3 cm. No change from 23.2-23.4. Felt sudden pain at 1am at 23.5 weeks gestation. Was complete (10cm) and Serena's foot was coming down and kicked the OB's fingers when she felt my cervix.
Serena Lynn Rodriguez "A Twin"
Gestational age 23 weeks and barely 5/7ths...(born at 3:18am on the 5th day)
Born by emergency classical C-Section. Breech
Birth weight:
1 lb 3.2 ounces 12" long. Lowest weight 14 ounces.
NICU Stay:
122 days
Respiratory:
No oscialltor. Conventional vent until Nov. 16 (48 days) Stayed on CPAP after first attempt. Never returned back to conventional vent.
Treated in NICU with one short course of steroids (Dex)
CPAP until Nov. 28 (12 days) onto nasal cannula
Came home on nasal cannula at 300 cc. a little more than 1/4 liter O2...now requires O2 only while in a deep sleep. Has a paralyzed vocal cord from PDA ligation, sub glottis stenosis and tracheal malasia (floppy and narrow airway.) Aspirates on thin liquids...must thicken liquids. Repeat bronchoscopy scheduled for January.
PDA:
PDA surgically ligated after attempts of Ibuprophen (first time used at our NICU) originally worked, and later failed when ductus reopened.
IVH:
Bilateral Grade II. IVH resolved. "Echogenisis" detected on head ultrasound. Not artifact,not definitely being called PVL or anything other than an "echo." Still unsure of what this is or the implications.
ROP:
ROP stage 2/3 zone 2, some zone 1, no plus disease. Treated with laser surgery in NICU.
Hearing:
"Referred" in left ear on hearing exam in NICU. 2 months later passed hearing tests on both ears. Tubes placed in both ears to drain fluid in July 2007.
Current meds: Multivitamin with fluoride. Flovent 110 mcgs BID. Nebulizer PRN.
Development:
Rolling both ways, Sitting, crawling, pulling to stand, bending down while in a standing position while holding on with one hand. Will take steps while holding on. Vocalizing saying "ba ba ba."
Eating: baby foods and table foods. Drinking formula from a bottle. Can feed herself small pieces of food off the tray. Currently going through stranger anxiety. Wants Mommy the most! :)
EI once per week. ST consult in the works, hopefully ST once per week.
Sleeps through the night
Edwin Kelly Rodriguez, Jr. "B Twin"
Gestational age- 23 and (barely 5/7ths...born at 3:20am on the 5th day)
Born by emergency classical C-section. Transverse.
Birth weight:
1 pound 3.6 ounces 12" long
NICU stay:
122 days
Respiratory:
Oscillator Sept. 29-October 29 (30 days) Came off oscillator only after first steroid dose given at 28 days old.
Conventional Vent until Nov. 27th (29 days after coming off the oscialltor)
Made it to CPAP on Nov. 27th Stayed on CPAP after first attempt; never returned to conventional vent.
CPAP until second week of December (not sure of the date...CPAP about 18 days) onto nasal cannula.
2 courses of steroids (Dex), came home on Pregnisolone at 2.5 mls every other day. Weaned off Preg. after several weeks.
Came home on nasal cannula at 500ccs, aka 1/2 liter O2.
Was weaned down to 150ccs, but EKG determined pulmonary hypertension last spring. Back up to 450ccs with a no wean order. Finally began slow monthly wean...down 50ccs per month. Currently on 200ccs, with a down 50ccs wean biweekly.
PDA:
PDA surgically ligated after 1st dose of Indocin originally closed the ductus, but it reopened after a couple weeks.
IVH:
At first called a grade II IVH, but later called a grade I. Resolved itself by discharge.
ROP:
ROP stage 3 mostly zone 2, some zone 1 and plus disease. Treated with laser surgery.
Reflux:
Reflux medicated with Reglan and Pepsid in NICU for severe reflux with NG tube resulting in ALTEs episodes, required chest compressions and manual bagging to bring him back. Came home on Pepsid; switched to Zantac. Ended Zantac after episodes frequent of projectile vomiting once we came home from NICU. Back on Zantac now to reduce pain from reflux. Still refluxes, but only vomits when sick (mucus build up) or when he gags or has a coughing fit.
Meds:
Multivitamin with fluoride, Flovent 110 mcgs BID, Neb PRN, Zantac
Development:
Rolling from back to belly, belly to back, on tummy with head raised in prone position. Rests on forearms but does not push up on hands in prone position. Combat crawls on belly by pulling with arms and bending and pushing with knees/legs. Often keeps head down while "crawling." Sitting unassisted for a few seconds. Can sit with the support of a Boppy pillow for longer periods of time.
Eating: eats baby food, table food, and drinks formula from a bottle. Is working on picking up small pieces of food and consistently getting them into his mouth.
Language: says "hi" "hey" "da da" "daddy" "ba ba" "ooooo"
Receives EI once per week, will begin PT once per week beginning next week.
Sleeps through the night. Thank goodness :)
And most importantly, Serena and Edwin are extremely happy and social. They know they are loved and love us right back. They are miracles and are sooo amazing! And soooo darn cute!
So here I'm doing more today than posting pics of my little ones and talking about the new cute things they are doing.
I received an email from a woman who has a newborn 23.5 weeker. Someone emailed her my blog, which was so touching because this is part of why I post (also to update the fam and friends.)
Of course she is at the place that so many of us were...your child was born way too soon, you are bombarded with information, statistics, and decisions to be made. It's a whirlwind of emotions, still too painful for me to think about without crying. I wouldn't wish the experience on anyone, and my heart goes out to EACH and EVERY family who is undergoing that pain or has in the past.
One of the biggest concerns (other than the fact that your child can't breathe, is desatting and having bradys to the point that they have to manual bag them several times a day) is what is the long term outcome for my child/ren and what affect does all of this have on their brain? I remember trying so hard NOT to think about this, but I can't deny it was the ever lurking thought that would sneak its way in numerous times per day. How are other kids born as early as mine doing? Will they be those miracle children? Will they defy all odds? What if I have two children who can't walk, talk, or self feed? How will I manage that? Am I strong enough to do that?
I have come to a totally different place now. I read a lot, and thanks to the many blogs I found, I realize one thing that I've come to accept. My children will never be "normal." They will always be affected in some way by their early birth. They get sicker easier than others and it hits them harder. Serena's voice will probably always be affected by her paralyzed vocal cord. EJ might not have the most finesse of all his peers. I don't even know how he will do motor wise even though his pedi tells me he will walk and do all these things in time, but no one knows this for certain; and you know what? That's ok. It's okay that when they are around other 9 month olds I can see the difference in development, size, and head shape/size. It doesn't matter that I may have to help them with many things including school work. I accept the fact that this is not a typical journey through parenthood, where your child hits their milestones on time and develops like a typical child their age. My life won't be about the typical because there is nothing typical about having your children leave your womb at only 23.5 weeks. It's unnatural and pretty damn unfair in my opinion, but I accept it's my reality, and as much as I wish my children could have had their full 40 weeks, it wasn't the case and here I am today with two beautiful children who weren't expected to survive. So how can you tell me my life is doomed to be miserable? (reference people who don't believe in resuscitation at my kid's gestation.) My life won't be miserable because I am THANKFUL for the lives of my children. I am GRATEFUL that neonatology saved their lives. And NO I don't want my children to experience pain or suffering, but because we love them and parent them in a loving and nurturing way, I believe we will get through any obstacle because that's our job as their parents. No, don't get me confused, I'm not saying we can "cure" our kids with love, but what I am saying is we'll get through the tough times and do what we can as parents to manage our children's care and lives in the best way possible.
My heart goes out to this new mom who is searching for answers and trying to find SOMEONE out there who has been through this and understands. I can't predict the future, just like the NICU team can't, but what I do know is that the kids who "on paper" appear to have the significant to severe disabilities, that I admittedly was so afraid of, are happy, loved, and amazing.
New moms want to know the experience of others so they feel less alone. They want to prepare themselves for what lies ahead. Even strangers wonder, and I have had a couple of people ask about the babies (they see the nasal cannula on EJ). I explain they were born at only 23 weeks gestation and sometimes people ask about their long term outcomes. When they say "oh they'll catch up though." I say "no, probably not." I say, "they will always be affected by their early birth in some way and I am ok with that; I am thankful they are alive." Someone else asked if they would have "problems with development" because they were born early and I say "yes, they are delayed." I am in no way ashamed of my children and see no reason to sugar coat things to make the public feel more comfortable. I don't NEED to know about their cousin's next door neighbor who was only a pound at birth and who is graduating from college. That's wonderful, but I don't NEED that reassurance to tell me everything will be fine, because I'm ok with the fact that our journey will be atypical.
One thing that this new mom is questioning is brain bleeds. Serena had a bilateral grade II with what appeared to be a cyst-like image that didn't go away, so they predicted that it was NOT artifact. I don't know what it was, I had convinced myself it was PVL, and still might be, who knows. EJ had what was first deemed a grade II bleed, but then the next ultrasound tech said grade I. I don't know much about how a bleed affects a child long term unless it is a large bleed with hydrocephalus...in that case I know sometimes shunts are needed, and it can affect development. But I have come to realize is that simply being born at 23,24,25,26 weeks affects development regardless of a head ultrasound. We need to abandon this notion that everything will be ok. And what is "ok" anyway? Some kids have extreme difficulty eating and oral aversion and reflux and this is life altering for the family. They can walk and talk, but let's not minimize what they deal with. There are varying issues we deal with as parents of preemies and many of us found out about them by reading other's experiences, not from what is written in books, at least not much. There was very little written about babies born at 23 weeks, because let's be honest, how many years have babies born at this gestation been routinely resuscitated? Even today there is still a CHOICE about resuscitation at 23 weeks at our NICU and many others. The information I gathered was from blogs, and it has been a saving grace.
So, if you'd like share your story with this new mom who will be reading this post and for the many others out there who are just coming into their NICU experience and just finding the blog world, please comment.
If it's a lot to write about in a comment and you would be willing to provide info and support through private email, feel free to just comment your email address or website.
Thanks!!!
Just a reminder. In my January 2006 archives one post "101 days recap" does include my almost daily journal of what the twins went through from birth to January. I then found blogger and began posting here. But I do have all the details in journal form on that post.
Here's our *abbreviated* story:
I went into a routine ultrasound appointment at 23.2 weeks gestation. Found that my cervix was shortened and I was funneling. Admitted to L&D, given the 48 hours worth of steroids. 3 centimeters dilated upon admission. Given oral med to stop contractions (I forget the name). Never received mag. because they believed I was staying at 3 cm. No change from 23.2-23.4. Felt sudden pain at 1am at 23.5 weeks gestation. Was complete (10cm) and Serena's foot was coming down and kicked the OB's fingers when she felt my cervix.
Serena Lynn Rodriguez "A Twin"
Gestational age 23 weeks and barely 5/7ths...(born at 3:18am on the 5th day)
Born by emergency classical C-Section. Breech
Birth weight:
1 lb 3.2 ounces 12" long. Lowest weight 14 ounces.
NICU Stay:
122 days
Respiratory:
No oscialltor. Conventional vent until Nov. 16 (48 days) Stayed on CPAP after first attempt. Never returned back to conventional vent.
Treated in NICU with one short course of steroids (Dex)
CPAP until Nov. 28 (12 days) onto nasal cannula
Came home on nasal cannula at 300 cc. a little more than 1/4 liter O2...now requires O2 only while in a deep sleep. Has a paralyzed vocal cord from PDA ligation, sub glottis stenosis and tracheal malasia (floppy and narrow airway.) Aspirates on thin liquids...must thicken liquids. Repeat bronchoscopy scheduled for January.
PDA:
PDA surgically ligated after attempts of Ibuprophen (first time used at our NICU) originally worked, and later failed when ductus reopened.
IVH:
Bilateral Grade II. IVH resolved. "Echogenisis" detected on head ultrasound. Not artifact,not definitely being called PVL or anything other than an "echo." Still unsure of what this is or the implications.
ROP:
ROP stage 2/3 zone 2, some zone 1, no plus disease. Treated with laser surgery in NICU.
Hearing:
"Referred" in left ear on hearing exam in NICU. 2 months later passed hearing tests on both ears. Tubes placed in both ears to drain fluid in July 2007.
Current meds: Multivitamin with fluoride. Flovent 110 mcgs BID. Nebulizer PRN.
Development:
Rolling both ways, Sitting, crawling, pulling to stand, bending down while in a standing position while holding on with one hand. Will take steps while holding on. Vocalizing saying "ba ba ba."
Eating: baby foods and table foods. Drinking formula from a bottle. Can feed herself small pieces of food off the tray. Currently going through stranger anxiety. Wants Mommy the most! :)
EI once per week. ST consult in the works, hopefully ST once per week.
Sleeps through the night
Edwin Kelly Rodriguez, Jr. "B Twin"
Gestational age- 23 and (barely 5/7ths...born at 3:20am on the 5th day)
Born by emergency classical C-section. Transverse.
Birth weight:
1 pound 3.6 ounces 12" long
NICU stay:
122 days
Respiratory:
Oscillator Sept. 29-October 29 (30 days) Came off oscillator only after first steroid dose given at 28 days old.
Conventional Vent until Nov. 27th (29 days after coming off the oscialltor)
Made it to CPAP on Nov. 27th Stayed on CPAP after first attempt; never returned to conventional vent.
CPAP until second week of December (not sure of the date...CPAP about 18 days) onto nasal cannula.
2 courses of steroids (Dex), came home on Pregnisolone at 2.5 mls every other day. Weaned off Preg. after several weeks.
Came home on nasal cannula at 500ccs, aka 1/2 liter O2.
Was weaned down to 150ccs, but EKG determined pulmonary hypertension last spring. Back up to 450ccs with a no wean order. Finally began slow monthly wean...down 50ccs per month. Currently on 200ccs, with a down 50ccs wean biweekly.
PDA:
PDA surgically ligated after 1st dose of Indocin originally closed the ductus, but it reopened after a couple weeks.
IVH:
At first called a grade II IVH, but later called a grade I. Resolved itself by discharge.
ROP:
ROP stage 3 mostly zone 2, some zone 1 and plus disease. Treated with laser surgery.
Reflux:
Reflux medicated with Reglan and Pepsid in NICU for severe reflux with NG tube resulting in ALTEs episodes, required chest compressions and manual bagging to bring him back. Came home on Pepsid; switched to Zantac. Ended Zantac after episodes frequent of projectile vomiting once we came home from NICU. Back on Zantac now to reduce pain from reflux. Still refluxes, but only vomits when sick (mucus build up) or when he gags or has a coughing fit.
Meds:
Multivitamin with fluoride, Flovent 110 mcgs BID, Neb PRN, Zantac
Development:
Rolling from back to belly, belly to back, on tummy with head raised in prone position. Rests on forearms but does not push up on hands in prone position. Combat crawls on belly by pulling with arms and bending and pushing with knees/legs. Often keeps head down while "crawling." Sitting unassisted for a few seconds. Can sit with the support of a Boppy pillow for longer periods of time.
Eating: eats baby food, table food, and drinks formula from a bottle. Is working on picking up small pieces of food and consistently getting them into his mouth.
Language: says "hi" "hey" "da da" "daddy" "ba ba" "ooooo"
Receives EI once per week, will begin PT once per week beginning next week.
Sleeps through the night. Thank goodness :)
And most importantly, Serena and Edwin are extremely happy and social. They know they are loved and love us right back. They are miracles and are sooo amazing! And soooo darn cute!
Thursday, November 1, 2007
SHE DID IT!!!
Watch my baby girl say "ba ba ba" and mimic the way I'm moving my mouth. EVen when you stop hearing me say ba ba ba in the beginning, I am still mouthing it, and you can see her watching me and then she does it herself. She even tries to make her mouth into an "o" shape when I try and get EJ to say "ooooooo." Sorry it's long, I am just too proud to clip it! The ba ba ba part is the first 3 minutes, and if you want to watch EJ appearance and the rest feel free. That heavy quick breathing is what she does when she is excited or proud of herself :)
Way to go Beanie!!!
Way to go Beanie!!!
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