Baby Tjader's Journey

A life undefined by pPROM, prematurity and Cerebral Palsy.

Our fur baby had an accident January 14, 2012

Filed under: Uncategorized — Aimee @ 8:36 pm

This is Russell. He’s our 12-year-old miniature pinscher and he came in from outside today looking like this. We’re not sure how it happened, but his eye came out of its socket!!! He had surgery to put the eye back into place and he’s recovering now. Poor lil’ guy!

Poor lil' Russ!

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Maddie’s mom May 9, 2011

Filed under: Uncategorized — Aimee @ 11:01 pm

My first of many Mothers Days was dedicated to my friend Jessica, the bravest mommy I know. I’ve only met Jessica once — well twice, really — but we share a very special bond. To me, Jessica epitomizes the true meaning of motherhood.

I first crossed paths with Jess online last summer while we were both on bedrest for Preterm Premature Rupture of Membranes. While I complained about icky hospital food and nurses with no regard for privacy, Jessica endured the bravest fight of her life just across the river in St. Paul. Sadly, Jessica’s sweet angel Madeline Deborah is not with us today. She was born Aug. 17 at 24 weeks and 5 days gestation. She weighed 1 lb. 4 oz. and lived for 4 precious hours. Maddie was a fighter, just like her mama. BOTH of them are mine and Lila’s forever heroes.

Jess and I remained in touch through an incredible group of 15 women from all over the world who’ve all experienced pPROM. It’s a private group on Facebook called pPROM Warriors and we share the triumphs and tribulations of the trauma of pPROM, including some very personal information. This group has saved me. It sounds cliche, but it’s so true and I think many of them would say the same thing about themselves.

Fast-forward several months. I’m at the doctor’s office making appointments at the front desk when I hear my name. I turn to see Jessica. Keep in mind we had not met in person up to this point. Shocked and amazed, we both stared at each other for a moment before settling into each others’ arms for a tearful embrace. We promised to make a point of getting together. It was ridiculous that we hadn’t met up until then and there’s a lot of excuses for it, but none that are truly valid. We both walked away from that bizarre encounter shaken by the fact that something bigger than us put two very broken women in the same room at the same moment to hold each other up. It was incredible. It turns out that Jess had recognized the earrings I was wearing from one of my Facebook pictures and suddenly my name was coming out of her mouth.

I finally met up with this incredible woman again a few weeks ago when she came over to see me and Lila. First of all, she brought homemade cupcakes, so I loved her from the moment she stepped in the door. But honestly, I was a little concerned about how seeing Lila would affect her. I could only imagine how difficult it would be to see other babies who are the same age as Maddie would be. But there was something very special that I saw that day between Lila and Jess. Lila was going through a bit of stranger anxiety at the time, firing off a skeptical eyebrow to anyone other than me and her dad. But not with Jessica. She took to her immediately and I watched in amazement the joy that poured out of both of them. I saw the mother in Jess.

There was a moment when Jess was playing peek-a-boo with Lila on the couch that a little unknown boy came to my mind. I was in the midst of feeding hell with Lila and took a timeout in the doctor’s office after one of her appointments to feed her while she slept. I sat her up to burp her and upon seeing that I had a baby in my arms, a little boy exclaimed to his mother, “Hey! That’s a mom, too!” I looked down at my sleeping baby, kissed her head and thought to myself, “Yes, I am a mom. A very lucky mom.”

And that’s what I wanted to say to Jessica that day. “Hey! You’re a mom, too!” Even though Maddie’s not here, it doesn’t change the fact that Jessica fought her damndest to keep Maddie safe and give her the best life that she could. No matter how short of time, she held her in her arms with as much love as any mother would.

To top it all off, Jessica lost her own mother a few years ago. Utterly heart-wrenching. I cannot fathom life without my daughter, let alone my own mother. I’ve spent a good amount of time feeling sorry for myself lately, but it’s no way to live and so I’m taking cues from my new friend. She’s had a rough go of it and it’s not fair, there’s no doubt about that. But I see such positivity and zest for life inside her — it’s clear that her mom did a damn good job while she was here. I don’t think I’ve been this deeply affected by the love and humility of someone in a long time. I think I have a lot to learn from her and I’m looking forward to getting to know my new friend, Maddie’s Mom.

 

Farewell for now March 21, 2011

Filed under: Uncategorized — Aimee @ 11:27 am

image

I’ve been a very bad blogger. Many of you keep coming back to see the latest update on Lila only to find old posts from several weeks past.

Lila is doing very well. She’s growing. She’s happy. Yet we still struggle to feed her. Our schedules are overloaded with physical therapy, occupational therapy, nurse visits, pediatrician, and other various specialists who all have their best intentions to help us figure out why Lila will eat only when she’s asleep. But we have reached an overwhelming point where we need to put a stop to so many of these wonderful services so we can stop obsessing her challenges and start celebrating her successes.

I also need to take a personal time out to focus on myself and my immediate family. I am going to take a temporary leave of absence from the blog, but I will be back! I look forward to updating you all next time after a (hopefully brief) cleansing of the mind.

Until then, here’s a recent picture of Lila. Love to you all! Thank you for your continued support.

Love,
Aimee

 

2010 Year in Review December 31, 2010

Filed under: Uncategorized — Aimee @ 10:02 pm

It’s been a tough year to say the least. I knew I wanted to write a post to summarize 2010. Or did I? Can’t we just forget it ever happened? I’ve been thinking about it all day; just don’t know what to say. Maybe if I start typing, the words will just come. Here goes …

Lets go back to 2009 for a moment. It was a good year. Family vacation to West Virginia, a romantic vacation to Florida with the love of my life, and a decision to grow our family. On my 28th birthday, Nov. 5, 2009, we learned I was pregnant. Fast forward two weeks and we’re in the labor and delivery unit of the hospital waiting for a shot of methotrexate to dissolve the pregnancy. Our baby was not viable. It was an ectopic pregnancy, meaning the egg had implanted itself in a fallopian tube instead of the uterus. My life was at risk if we let the pregnancy continue.

Three months later I became pregnant again. (we didn’t waste ANY time) I lived in fear for the first 12 weeks, worrying that I’d lose another baby. But finally, we could share our happy news with the world. During an ultrasound, we saw the baby in the uterus and saw her heart beating. We were really pregnant this time! I made pink and blue cupcakes for all of my co-workers and could hardly contain my excitement. I puffed out my stomach when I wasn’t REALLY showing, wishing someone would notice and ask if I was pregnant. I took my first “belly picture” on the roof of the Star Tribune with the city skyline as the backdrop. How cinematic, right?!

A week or two later, my world came crashing in. We all know what happened from there, so I won’t rehash the details. I went into survival mode. I spent the next 13 weeks with my eye on the prize, hoping, praying, believing that all would end well. I checked out from Abbott Northwestern Hospital a new Aimee with a new outlook on life — an appreciation for truly small things and a big belief that miracles really do happen. Despite my baby holding on for dear life, I remained the happy, positive, naive??? mother that I was when I laid in that hospital bed knitting baby hats for so long.

Everyone told me that the ENTIRE experience would be a distant memory in no time. I’m still waiting. It’s still fresh in my mind with no sign of it going away anytime soon. I love my daughter. I am grateful for every ounce of her being and so damn proud of her for all that she’s endured. I feel lucky. Not all of the pPROM moms have happy endings and we mourned many of their losses along the way. Despite Lila being home with us in time for the holidays; despite seeing her REAL smile for the first time; despite FINALLY being a mommy to the most amazing girl in the world … everything is not okay.

I debated how honest I wanted to be in this post for fear that some of you might judge me if you really knew how I felt. But I know there are other pPROM moms out there reading; some who are laying in a hospital bed right now holding on to dear life, and I believe it’s fair and necessary to be honest for them. My crew of pPROM moms … hell, they’re my friends, my sisters, my heroes .. started a dialogue about this recently. I was relieved to know I’m not alone in finding it difficult to get past ALL OF THE STUFF of the past several months. I don’t have it in me to find the words to eloquently discuss what this experience has been like now that I’m on the other side of it. Since I don’t, I want to share with you what my friend, Elisa, wrote, regarding the issues we’re dealing with. With her permission, here’s what she wrote:

Last night I had a dream I was pregnant and I woke up utterly terrified, with real tears in my eyes. Note to self: residual trauma still on board. Scar tissue still tender. I am ever grateful for the incredibly lucky gift of Bennett, but I wonder how long it will take for the trauma of that long hospitalization to work itself through and out of me (and note, I am a licensed therapist who has worked with many clients recovering from various traumas, etc.).

It is common to meet preemie moms who can share and offer support of what the NICU trauma/preemie mom stress is like. And the support means a lot … knowing someone can relate.

But I’m finding the double-whammy of a long personal hospitalization on bedrest (mine was 90 days in the hospital) followed by a baby in the NICU is not something you easily pick yourself up from and just dust yourself off. I’m grateful for this group, but I really wish there was an actual place I could just go once a week and sit face to face with other moms who went through this and let it work itself out by talking about it and moving through it/past it. This group is awesome. I just wish it were live and in person.

Sorry for the long post. Again, I am so grateful for Bennett and every day I hold that we were blessed with such luck for his outcome. I’m just still struggling to find my sea legs and any sense of normalcy. It’ll come in time, but at times I think I’m still in shock over EVERYTHING. The water breaking, the hospitalization, missing June/July/August, all of it.

Thank you for being a place to go to … I’m wishing you all some peace as we move toward this holiday week.

xo,
Sentimental in San Francisco
A week later …

Follow Up to the Trauma Post I Wrote Last Week:

I was moved by all the responses to the post I shared last week discussing how the trauma of all we’ve been through seems to be catching up with me now. It was clear I am not alone in struggling to recalibrate after all we’ve been through. As you know, I am a therapist. That said, I do not always feel that therapy is the right response for every tough situation in life and that people use all sorts of healthy coping mechanisms (and unhealthy ones) to deal (or not deal) with that gets them stuck or what they struggle with. However ………

Yesterday, for the first time since my water broke, I went back and saw my therapist. I haven’t seen her since dealing with the fertility issues we had in trying to conceive Bennett. A few weeks ago, I realized that for my sake, my family’s sake, my relationship with Bennett’s sake … I deserved some support in sorting out what happened and where I find myself now. I didn’t want to go. I’m too overwhelmed to go. So many excuses on why not to. But I realized I needed to make it happen. I’m so glad I did.

I’ve been wanting to write this to all of us and have been trying to find a way to share it without sounding preachy. Here goes: we all went through a significant trauma. Being the parent of a preemie is trauma enough, even if your water never broke far in advance. But … we had bedrest. We had fears our babies wouldn’t make it. Some of our babies didn’t make it and we are left holding that loss. We had lengthy hospitalizations. Many of us had traumatic births, both surgical and vaginal. We had to hold for quite some time that our baby might not make it. We had separation from our loved ones, for some of us … our young children. This was a trauma. Losing your child is a trauma. Watching your baby be intubated (or not being able to watch because your behind a blue curtain) is a trauma. AFI scans were a trauma. All of it. It impacted our partners, our children, likely our parents and the parents of our partners, and on and on.

Mostly, it impacted US. There is scar tissue. How many of you feel a twinge of sadness, jealousy, whatever when you see a fat healthy newborn or a 9 month pregnant woman walking out of her yoga class? grocery store? For those whose babies died, I can’t imagine the feeling of loss after being so brave and fighting so hard for your child. It’s all so unfair.

For those of you who have wondered if these feelings will ever go away, I think they CAN transform. However, your thoughts and feelings about what you went through deserve some attention. You are all truly such incredibly brave, courageous, beautiful mothers. The residue of what lingers can transform … but not without some attention. It is near impossible to find the time to get to therapy, I’m sure. And of course, financial resources are wiped out after all we’ve been through. But I just want to say that you ALL deserve that support. You are worth it. Your family relationships are worth it. You had to show a strength (and sustain it for a LONG time) that many will never have required of them in a life-or-death way. YES. For many of us, our babies are here. Miracles, indeed. They will likely be alright. The NICU is over. We are at home. But making sense … making MEANING … of what happened is of value. For our own health.

If you have thought of doing therapy, but push it aside because of money or time constraints, I have this thought: it could be the single most important thing you do for yourself so you have more capacity to be the kind of mom you want to be to those babies you worked so hard for. It’s not easy to open it all up again, but the alternative (if not resolved … through therapy or other ways that might be more helpful to you) isn’t good.

You are amazing women. I am SO DAMN GRATEFUL to have encountered you on this incredibly frightening, strengthening, horrific and blessed journey. I encourage you to consider getting a little support. It need not be long-term. Anywhere from 3-6 sessions could make a tremendous difference. It takes a while to heal from what we experienced (physically/mentally/financially/medically/etc.) and I do believe that there would be excellent therapists willing to meet with you at a sliding scale rate. If you are interested, I’ll share how I think that can be arranged based on the way I work with clients who encounter financial hardship that can keep them from doing therapy when they’re in need.

I honor that there are many ways to deal with sadness/trauma/pain/grieving the loss of our summers, healthy pregnancies, healthy babies, etc. Some turn to faith, exercise, the arts, etc. There are many ways to deal with grief and loss. I also honor that if I were a millionaire, my Christmas gift to all of you would have been 6 sessions of therapy, a massage, your favorite cocktail, a once-a-week nanny so you can get out and 4 hours at the hair salon.

Sending a lot of love, appreciation and tremendous respect for you all. I am happy to hear from any of you who might be considering therapy on how/why to make it work. You are worth so much support!

Love from California,
Elisa

Well said, Elisa. THANK YOU.
So for 2011, I resolve to deal with any and ALL residual effects from 2010 and find the Aimee I discovered in room 5480 of Abbott Northwestern Hospital … so that I can be the mommy that Lila deserves.

 

Day 79: A letter to my daddy September 1, 2010

Filed under: Uncategorized — Aimee @ 10:17 am

Dear Daddy,

I hope you’re not too worried about turning 30 today. There’s nothing to worry about, because it’s going to be the best year of your life. At least that’s what Mommy’s been telling me. Soon, you’ll get to hold me in your arms making this scary moment in our lives a distant memory. I can’t wait. I can’t wait for you to take me to my first Twins game, teach me to play the guitar and sing me silly songs before I go to sleep. Until then, I want to tell you what a perfect Daddy you already are.

Even though I’m still inside Mommy’s belly, I can feel your love. I hear you talking about your hopes and dreams for my future. When you call Mommy on the phone you always ask about me. And remember when you put your ear on Mommy’s belly to see if you could hear me, and I kicked you? Sorry about that! I just wanted to say, “Hi, Daddy!”

I also can feel the love that you and Mommy have for each other. My Mommy was pretty smart to fall in love with such a loving, thoughtful and selfless man. Did I mention handsome? Yes, very handsome. Hopefully I get some of your good looks! I want to thank you for taking such good care of Mommy while she’s working hard to take care of me. I probably wouldn’t have been able to hang out inside of her as long as I have without you. I know when you are here beside Mommy and that makes me feel safe and loved. She tells me all the time how lucky I am to have you as my Daddy and I believe her. She also tells me she’s madly in love with you and knows that one day, I too, will find my prince charming. Just go easy on him, ok?

I know that this isn’t how you imagined spending your 30th birthday. It’s not what Mommy imagined either. She had BIG plans for you, but since she has to stay in bed, she will have to improvise. For the past nearly three months, nothing has been what anyone imagined. But I promise you this will all be worth it when we meet for the first time. Until then, stay strong for me and my Mommy, ok? I love you!  And GO TWINS!

Love,
Your little girl

 

A week of firsts August 12, 2010

Filed under: Uncategorized — Aimee @ 7:40 pm

Thanks to my dear friend, London, I’ve been learning to knit while in the hospital. I finished my very first project yesterday, an adorable baby hat with little ears. Now I’m working on another hat. It’s a more challenging pattern and will be smaller so that the baby can wear it right away.

Ta-da! Here it is, modeled by Baby Tjader’s first Care Bear.

I had accupuncture for the first time Monday. I can’t say if I liked it or not, because the accupuncturist was so awful! The actual accupuncture was fine, but she was something else. She came into my room and talked a bit about eastern vs. western medicine and the benefits of accupuncture. But then she started delving into how I’m spending my time on bedrest. “What are you reading,” she asked. I told her I read the newspaper daily, am working on a book, and spend a lot of time on my support group website and following the blogs of mothers who’ve already had their babies and are in the NICU. She says, “Oh, DON’T be reading stuff about the NICU! You need to fill yourself with positivity. I told her that I actually like to be informed and think I’m doing a pretty good job of balancing everything. She told me to be careful about what I watch on TV, because even if I’m not paying attention, the TV can affect my energy. I don’t watch that much TV, but the TV is always on and so what if I feel like watching TMZ or some other crap?! By this point, I’m thinking this lady really needs to back off.

Then, she says, “I noticed in your chart you’re taking some supplements. Tell me about the food supplement you’re taking.” So I tell her it’s a green food supplement, because there are virtually no green vegetables on the menu. It contains wheat grass, spirulina, algae and other disgusting things. She says, “Oh, be careful about that, because wheat grass and things like that are “cool” foods and you need to fill yourself with “warm” foods. Ok??? Whatever THAT means! If you’re seriously concerned about a supplement, then tell me why. I don’t know what this warm foods/cool foods thing means. Oh, and aren’t we supposed to be doing accupuncture right now?

She also asked my husband what his vegetarian diet consists of. Then she says, “I was a vegetarian for 10 years, but that’s before I knew any better.” WTF?! Why is she even asking my husband ANYTHING?!

So the needles are in — no big deal — and now I’m supposed to relax while this lady has her fingers on the bottoms of my feet. I tried REALLY hard to focus on something else, but all I could think about was how annoyed I was with this woman! It’s not that I mind people making suggestions and sharing information with me. I welcome that. But she was waaay to pushy and it just wasn’t the time for it. I feel like she tried to cram as much of her agenda down my throat in 20 minutes when the point of the session was accupuncture! It was supposed to relax me.

I will do accupuncture again, but with a different person. 🙂

In better news, the hospital hired a new food service provider so we got a brand-new menu on Tuesday. A much improved menu! The food is better overall and among the new highlights are stir fry, burritos, brown rice, hummus, brocolli, turkey sausage and red beans and rice! They also serve all of our drinks in real glasses, so now I can dip my cookie in my milk. It really doesn’t take much to make me happy these days. 🙂

Here’s a look at my dinner tonight: chicken stir fry with veggies and brown rice, fruit, cookie and milk.