It's impossible to ignore the fact that today would have been Ella's first day of kindergarten if she were healthy enough to attend. My news feed on Facebook is flooded with back to school photos. For most parents and children, this is one of the biggest milestones in a child's life.
I know, I know, things could be worse. I'm "lucky" to still have her here after everything she has been through, but some days it makes me angry that the "it could be worse" is that she could be gone; that we're that close to the bottom of the barrel, so to speak.
For the most part, social media has been a positive thing for me. I have been able to connect with hundreds of other special needs moms because of it, and made some real and lasting friendships that would have never happened otherwise.
But the downside is that when everyone is putting their lives on display, we tend to compare ourselves to everyone else. And it's impossible to ignore the missed milestones that continue to come over and over again. First steps. First words. First day of school. Etc., etc., etc. The list will continue to go on.
I don't enjoy having these pity parties, but we're all human and sometimes it's easier to focus on what we don't have rather than count our own blessings. And I honestly don't mind if seeing our struggles makes others appreciate what they do have, because most days are fine.
I try not to dwell on how difficult our life can be. Like anything else, I have honestly gotten used to it for the most part - the frequent hospital stays and the headaches that come along with managing her nursing, prescriptions, supplies and equipment. It's just our life. But some things still smack me in the face and stop me in my tracks, and this is just one of those days.
Wednesday, August 7, 2013
Monday, May 20, 2013
Trach Week
This week is Global Tracheostomy Tube Awareness Week. Ella has had her trach since she was 6 months old. She was born with a small, fragile airway, mostly due to Pierre Robin Sequence, and was unable to be intubated for surgery as a baby. She was also found to have both central and obstructive apnea and was put on C-PAP through a ventilator at that time. This photo below shows her trach tube clearly. It's held on by velcro ties that must be changed out daily along with care to her neck and the stoma (i.e., the "hole" in her neck) to prevent breakdown of the skin and infection.
There are a few different attachments used for the end of the trach tube. In this photo she is wearing a (purple) Passy Muir Valve which lets her breathe in through the trach but not out and allows her to make noise and have a voice. Without the PMV, she cannot make any noise. The other attachment we use is an HME or humidivent which protects the opening of the tube and provides moisture, and we have an attachment to give her oxygen when needed.
She must be suctioned fairly frequently throughout the day in order to keep her airway and lungs clear. At night when she goes on the vent, the circuit attaches directly to her trach tube. Technically she is "always intubated". For someone without a trach, this happens via the mouth in emergency situations. People who need long term support for their airway and lungs receive a trach.
Wherever we go, we must always have a backup (emergency) trach of the same size and one smaller in case it needs to be changed quickly. We must also carry our portable suction machine, suction catheters, saline bullets, oxygen and a pulse ox monitor.
Although Ella's airway has gotten larger and improved over time, her lungs are weak and do not have much reserve so she will always need to be on the ventilator for C-PAP/pressure support at night. She may need additional support (a breath rate) when she becomes very ill. In addition, she would likely still be a difficult intubation in an emergency situation, so she will always have the trach. There are many people who only have them temporarily, but for Ella it will be part of her for life!
There are a few different attachments used for the end of the trach tube. In this photo she is wearing a (purple) Passy Muir Valve which lets her breathe in through the trach but not out and allows her to make noise and have a voice. Without the PMV, she cannot make any noise. The other attachment we use is an HME or humidivent which protects the opening of the tube and provides moisture, and we have an attachment to give her oxygen when needed.
She must be suctioned fairly frequently throughout the day in order to keep her airway and lungs clear. At night when she goes on the vent, the circuit attaches directly to her trach tube. Technically she is "always intubated". For someone without a trach, this happens via the mouth in emergency situations. People who need long term support for their airway and lungs receive a trach.
Wherever we go, we must always have a backup (emergency) trach of the same size and one smaller in case it needs to be changed quickly. We must also carry our portable suction machine, suction catheters, saline bullets, oxygen and a pulse ox monitor.
Although Ella's airway has gotten larger and improved over time, her lungs are weak and do not have much reserve so she will always need to be on the ventilator for C-PAP/pressure support at night. She may need additional support (a breath rate) when she becomes very ill. In addition, she would likely still be a difficult intubation in an emergency situation, so she will always have the trach. There are many people who only have them temporarily, but for Ella it will be part of her for life!
Friday, May 10, 2013
Pseudo Mom
I can't talk to you about when to switch your baby to solid foods. I can't hold a conversation with you about the latest kid's movie or toy. I don't shuttle around from school to ballet lessons and play dates. We don't get invited to birthday parties or build sandcastles on the beach on vacation. In fact, you will rarely see me out in public with my daughter at all. But I am a mom.
I know that I won't ever give her advice on boys and friendships, or help with her homework. I won't have to discipline her and determine grounding sentences. And I won't anticipate her going off to college or getting married, which are all common aspects of being a parent.
When I'm around other moms of typical children, I feel just as out of place as the girl who has no children yet. I have about as much to offer as she does: maybe some anecdotal information I heard about a friend's child or my nephew. I have no first-hand experience on the majority of parenthood topics, and that can feel very awkward like I don't really have a child at all.
But I know being a mom is more than that stuff and deep down at the heart of it we're all the same. We all strive to do what is best for our children and to keep them safe and healthy. Though our day-to-day routines and visions of our children's futures may be very different, a mom's love is universal. I know that she knows I am her mom by the way she looks at me. I know she is telling me that she loves me with her ear-to-ear smile. I know that overwhelming, inexplicable feeling of unconditional love that comes with being a mom, and that is what's most important.
I know that I won't ever give her advice on boys and friendships, or help with her homework. I won't have to discipline her and determine grounding sentences. And I won't anticipate her going off to college or getting married, which are all common aspects of being a parent.
When I'm around other moms of typical children, I feel just as out of place as the girl who has no children yet. I have about as much to offer as she does: maybe some anecdotal information I heard about a friend's child or my nephew. I have no first-hand experience on the majority of parenthood topics, and that can feel very awkward like I don't really have a child at all.
But I know being a mom is more than that stuff and deep down at the heart of it we're all the same. We all strive to do what is best for our children and to keep them safe and healthy. Though our day-to-day routines and visions of our children's futures may be very different, a mom's love is universal. I know that she knows I am her mom by the way she looks at me. I know she is telling me that she loves me with her ear-to-ear smile. I know that overwhelming, inexplicable feeling of unconditional love that comes with being a mom, and that is what's most important.
Monday, April 22, 2013
Happy Birthday, Ella Grace
On the eve of Ella's 5th birthday, I am thinking about where we were at this exact moment five years ago. I went into labor around 8:30 in the evening and we went to the hospital. We were already aware that she would be born with some type of genetic issue or syndrome based on the findings of an ultrasound I had at 26 weeks, but we didn't know exactly what it was or how she would be when she was born. Since I had spent the past 10 weeks Googling every syndrome known to man, I had had a good amount of time to get used to the idea of having a special child, as much as that is possible anyway. I think the pain of labor did a good job of keeping my mind occupied, and at that point we were just ready to "know".
It wasn't until 4 o'clock the following afternoon that the doctors announced she would need to be delivered via C-section and less than an hour later she was finally here. I remember immediately asking John, "How does she look?" but can't for the life of me remember what he said. I got a quick glance at her in my drug-induced stupor and she was whisked away to the NICU while I was banished to my hospital bed unable to get up due to the surgery.
Now, I understand that doctors often err on the side of "worst case scenario". I guess it's at least in part so they don't imply false hope and to cover their own behinds, but our neonatologist did not have many good things to say when he finally came to my room and delivered the news of her diagnosis. I was handed computer printouts about Cornelia de Lange Syndrome (www.cdlsusa.org) and given a laundry list of the medical problems they had already noted and more they anticipated. All I can say is thank goodness for that little button that gave me more pain medicine when I pushed it. Well, that's until some time in the middle of the night when my epidural slipped out...but that's another story for another day.
It wasn't until the next morning that I really got to meet her for the first time. They wheeled me into the NICU and I saw my tiny, hairy, beautiful baby with a gazillion wires and tubes coming out. At 5 lbs. 1 oz. she was actually a decent size considering her diagnosis and the fact she was a few weeks premature. Despite everything they said was "wrong" with her, she was beautiful. And she was mine. I knew she was going to be okay and that was all that mattered.
Birthdays are always an emotional time filled with a lot of conflicting emotions. I'm so honored to be her mother. She has been through more medically than most people will experience in a lifetime but you would not know it by looking at her. She has a smile that can light up a stadium. She brings so much joy to everyone who knows her, and even to many who have never met her in person. She is honestly the happiest human being that I have ever seen and I could not be more thankful for that. She is resilient beyond belief. She has bounced back from the verge of death on more than one occasion. She endures constant hospitalizations with people poking and prodding and examining her. She smiles at them all. I know that I am biased, but there is just something about Ella. She leaves an indelible mark on everyone she meets and people do not forget her.
But if I'm going to be completely honest about this life with her, I have to talk about the conflicting emotions that come along with having a special child with exceptional needs. Every year that passes, the gap between Ella and her typical peers widens. As a parent it is hard to watch. Not for her, but for me. I know that it is purely selfish because SHE is happy. She doesn't understand all of the things that she doesn't get to do. I really try to not linger there, but I would be lying if I said those tinges of jealousy don't pop up every now and then.
Last week I went looking for a gift to give to her at the party we held this past weekend. The truth is, I could wrap up a toy she has had for years and she would smile just as big when we gave it to her. But I want to be able to get her things even though she doesn't need them or even understand the concept of getting a gift. So I found myself browsing the infant toy aisle for the fifth year in a row and I had a moment. It was obvious upon checking out that I was buying a birthday gift and I was dreading the cashier asking me whose birthday it was and how old she was going to be and imagining the look on her face if I answered honestly that she was turning five. Thankfully that didn't happen.
The occasional pity party is inevitable I think. The trick is to not linger there too long. Accept reality and move on, and above all COUNT YOUR BLESSINGS. I even get angry with myself for going there when I'm fully aware that she almost didn't make it to her 5th birthday and what a gift it is that she did. I know far too many parents who have lost their child and I have to keep it in perspective and cherish every moment. Tomorrow isn't guaranteed for any of us.
I have always loved celebrating any occasion, it's my nature. Anyone who knows me knows that I love a party! So for Ella I try and go all out and make it a true celebration with lots of family and friends because it really is a big deal. It's also a chance to thank those around us for their support of Ella and our family, and we are lucky to have so many people to thank.
The first time I saw Ella in the NICU
Ella Grace at her 5th birthday party this past weekend
It wasn't until 4 o'clock the following afternoon that the doctors announced she would need to be delivered via C-section and less than an hour later she was finally here. I remember immediately asking John, "How does she look?" but can't for the life of me remember what he said. I got a quick glance at her in my drug-induced stupor and she was whisked away to the NICU while I was banished to my hospital bed unable to get up due to the surgery.
Now, I understand that doctors often err on the side of "worst case scenario". I guess it's at least in part so they don't imply false hope and to cover their own behinds, but our neonatologist did not have many good things to say when he finally came to my room and delivered the news of her diagnosis. I was handed computer printouts about Cornelia de Lange Syndrome (www.cdlsusa.org) and given a laundry list of the medical problems they had already noted and more they anticipated. All I can say is thank goodness for that little button that gave me more pain medicine when I pushed it. Well, that's until some time in the middle of the night when my epidural slipped out...but that's another story for another day.
It wasn't until the next morning that I really got to meet her for the first time. They wheeled me into the NICU and I saw my tiny, hairy, beautiful baby with a gazillion wires and tubes coming out. At 5 lbs. 1 oz. she was actually a decent size considering her diagnosis and the fact she was a few weeks premature. Despite everything they said was "wrong" with her, she was beautiful. And she was mine. I knew she was going to be okay and that was all that mattered.
Birthdays are always an emotional time filled with a lot of conflicting emotions. I'm so honored to be her mother. She has been through more medically than most people will experience in a lifetime but you would not know it by looking at her. She has a smile that can light up a stadium. She brings so much joy to everyone who knows her, and even to many who have never met her in person. She is honestly the happiest human being that I have ever seen and I could not be more thankful for that. She is resilient beyond belief. She has bounced back from the verge of death on more than one occasion. She endures constant hospitalizations with people poking and prodding and examining her. She smiles at them all. I know that I am biased, but there is just something about Ella. She leaves an indelible mark on everyone she meets and people do not forget her.
But if I'm going to be completely honest about this life with her, I have to talk about the conflicting emotions that come along with having a special child with exceptional needs. Every year that passes, the gap between Ella and her typical peers widens. As a parent it is hard to watch. Not for her, but for me. I know that it is purely selfish because SHE is happy. She doesn't understand all of the things that she doesn't get to do. I really try to not linger there, but I would be lying if I said those tinges of jealousy don't pop up every now and then.
Last week I went looking for a gift to give to her at the party we held this past weekend. The truth is, I could wrap up a toy she has had for years and she would smile just as big when we gave it to her. But I want to be able to get her things even though she doesn't need them or even understand the concept of getting a gift. So I found myself browsing the infant toy aisle for the fifth year in a row and I had a moment. It was obvious upon checking out that I was buying a birthday gift and I was dreading the cashier asking me whose birthday it was and how old she was going to be and imagining the look on her face if I answered honestly that she was turning five. Thankfully that didn't happen.
The occasional pity party is inevitable I think. The trick is to not linger there too long. Accept reality and move on, and above all COUNT YOUR BLESSINGS. I even get angry with myself for going there when I'm fully aware that she almost didn't make it to her 5th birthday and what a gift it is that she did. I know far too many parents who have lost their child and I have to keep it in perspective and cherish every moment. Tomorrow isn't guaranteed for any of us.
I have always loved celebrating any occasion, it's my nature. Anyone who knows me knows that I love a party! So for Ella I try and go all out and make it a true celebration with lots of family and friends because it really is a big deal. It's also a chance to thank those around us for their support of Ella and our family, and we are lucky to have so many people to thank.
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