Baby Tjader's Journey

A life undefined by pPROM, prematurity and Cerebral Palsy.

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.

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Rotten pumpkin December 21, 2010

Filed under: Lila — Aimee @ 8:53 pm

Something sure to eventually induce insanity has been going on in the Tjader household recently. Lila turns into a pumpkin. Every night. For three hours. Her “witching hour” begins at 10 p.m. and winds down around 1 or 2 a.m., after she — and we — have reached the point of utter exhaustion.

“Sounds like Colic,” one of her doctors said recently. “There’s really nothing you can do. It should get better in a few months.”

A few months? After 13 weeks of bedrest and 10 weeks in the hospital with Lila, you’d think I’d have mastered the virtue of patience by now. Afterall, a few months is nothing! Not so. “I want to fix this … I mean, I NEED to fix this now and you’re telling me there’s no way to fix it? Great. Can I bring her back to the hospital and pick her up in a few months then?”

Of course I’m only joking. Sort of. Every night we watch this precious little girl wailing uncontrollably and I wonder what we’ve gotten ourselves into. Nothing works. Nothing. During Lila’s hospital stay, I was a very competent mother. I walked through those NICU doors at the end of it all feeling a little cocky, actually, knowing that my baby was a good-natured, very content baby. I “knew” my baby and having her home was going to be wonderful, joyful and any other happy “-ful” word you can think of. I was not prepared for her to start acting like a REAL baby!

Lila left the hospital a preemie and came home a newborn. It’s like the nurses flipped a switch in her and said, “So you think you can do our jobs, do you? Go ahead and try!” I concede. I know nothing about parenting. Certainly there are happier times (just not between the hours of 10 p.m. and 1 a.m.). In fact, I go to bed at night after negotiating with my three-month-old for three hours, fall asleep and have nightmares about becoming pregnant again. I wake up thinking, “Noooooooo!!!” I hear my fellow pPROM moms have experienced a bit of this, too. Can you say, “Post Traumatic Stress Syndrome?” But then I wake up in the morning and bring Lila into bed with me, feed her and snuggle for an hour or two. She’s so cuddly and terrific in the morning. I must learn to become a morning person.

Here’s to the end of 2010 and hoping that 2011 brings quieter bedtimes. 🙂

 

Baby likes her bottle December 17, 2010

Filed under: Lila,Milestones,Sunny days — Aimee @ 2:01 pm

Lila turned three months old this week and decided she’d had enough with the feeding tube. She took matters into her own hands and got rid of it! She didn’t pull it out as I’d been warned she was likely to do, therefore being very diligent to keep her little mitts covered. Nope. Instead, she threw it up. Her Auntie Meg was holding her when it happened. First came a good dousing of breast milk, then the tube. “Uhh, Aim?” I look over and there’s the tube hanging out of Lila’s mouth. The expression on her face indicated she was clearly very pleased with herself. Dec. 15 marked the official last day of the dreaded feeding tube.

Lila had been doing very well with her feedings. She was almost taking in the volume she was “supposed” to take. For the past few days, we’d only tube her in the middle of the night, mainly out of convenience. The kid sleeps through the night, so why wake her when we can just shoot the milk right on into the tube and go back to bed!? Totally selfish on our part. Anyway, as long as Lila keeps up the good work, the tube will stay out for good.

And yes, I did say, “Sleeping through the night.” It’s amazing. She’s a tough baby to get to sleep, but once she goes down at Midnight, she sleeps until 8 a.m. We’ve tried numerous times to put her to bed at 8 p.m., 9 p.m., 10 p.m., etc. But she raises her voice in a fit of protest, almost as if to say, “I will not go willingly one minute before 12 a.m.!” We’ll have to work on this over the next month, because I return to work in exactly one month and cannot have a child awake until Midnight.

We are adjusting to all of the changes in our life, slowly but surely. We’re settled into the new house and are loving it. Tyler’s very busy at work. He’s in retail, so this is the busiest time of year for him and he puts in some long hours. Still, he manages to come home and relieve me of baby duties or make a meal. He’ll even get up with Lila if she wakes in the middle of the night. I couldn’t do this without him. Really, I couldn’t.

We’re making our first road-trip with Lila for Christmas. We’re going to pack up her oxygen equipment and head to our parents in Bemidji. I’m a little anxious about the long drive, but Christmas wouldn’t be Christmas if we weren’t in Bemidji. The day after my water broke, Dr. Fairbanks was laying it all out on the table and said the outlook for us wasn’t good, but having a baby home with us at Christmas time was a possibility. I spent a lot of time on bedrest, envisioning Christmas Eve at my parent’s house with our new baby. I guess miracles do happen and dreams really do come true. Merry Christmas, everyone! We have a lot to celebrate this year.

 

Our good luck continues… December 5, 2010

Filed under: Lila — Aimee @ 9:53 am

We took Lila home from the hospital in an ice storm, and yesterday, we moved into our new house after a snow storm dumped about 8 inches on us. Go figure. When will our luck turn around?

Lila has been holed up in a hotel room with her Nana the past few days while we get settled into the new place. I’ve been moving during the day and sleeping at the hotel. Today, we bring our little girl home again.

Life with Lila at home has been very difficult. Hardest thing I’ve ever done in my life was taking care of her the first week in our cramped little house. Oxygen equipment, feeding tube, medication, dr. appointments… and a baby that didn’t want to sleep for more than an hour at a time during the night. This is harder than I imagined. Harder than bedrest. Even harder than her NICU stay. Or maybe it’s just a different kind of hard.

I’ve felt very alone. Nobody can understand what I’m going through unless they’ve gone through it. I’m under the impression that many people think everything is peachy now that Lila is home. This isn’t so. We have major obstacles ahead of us. I have a support system on Facebook of all places. A group of pPROM moms created a group called pPROM Warriors, so this is where I go for much of my support. It might seem weird confiding in strangers, but this group of women are no longer strangers to me. We’ve been through hell together and back. We were there for each other during bedrest and all the way through caring for our special needs babes at home. We cry together. We laugh. We share tips and info learned from our medical teams. We hold each other up. It’s a beautiful thing and I intend to meet as many of these moms as I can. I have new friends in all corners of the world!

Thank you to a number of people who helped us move yesterday. I was feeling pretty defeated and disappointed in our friends when nobody showed up to help in the morning, except for Tom and Lora, friends of mine from work. Of course our parents were there. Then I got a call from a woman I’ve never met before. She’s been following our story online since June, saw my plea for help on Facebook, and felt compelled to come to our rescue. So there I am in a snow-packed street hugging a stranger who I now consider a friend, tears pouring down because I’m so damn giddy that there are good people in this world. Thanks to Sheri and Paul for your help. You really turned the day around for us! And later, we had some friends show up and we got the job done. Big thanks to everyone, whom no doubt is sore this morning.