Baby Tjader's Journey

A life undefined by pPROM, prematurity and Cerebral Palsy.

Day 74: Growth Ultrasound August 27, 2010

Filed under: Sunny days,Updates — Aimee @ 12:58 pm

We had a growth ultrasound bright and early this morning and aside from hoping for more fluid, it couldn’t have gone much better. Our baby girl has doubled her weight in three weeks and now weighs 2 lb. 11 oz, putting her in the 48th percentile for gestational age. All of her measurements (abdomen, head, femur, etc.) are growing right on target. She’s still breech and has very little fluid — 1.7 cm — to work with. That’s the lowest amount of fluid we’ve seen yet, but I expected it. I believe my fluid levels are the lowest in the morning and build back up during the day. She was extremely active during the ultrasound — even had a case of the hiccups. Quite the little showoff she’s been! And this ultrasound tech also says, “It’s a girl!”

I’ve been feeling great the past few days. I’m finally able to nap once a day and am sleeping better, but always up at 5 a.m. Must be getting ready for this baby to arrive! My Mom and Dad, and Aunt and Uncle from West Virginia are visiting this weekend. They brought me pepperoni rolls and candy from my favorite candy store, so I’m a happy camper.

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Day 70: 28 weeks!!! August 23, 2010

Filed under: Milestones,Updates — Aimee @ 9:48 pm

I was just about to send this post through tonight when three of my gal pals and my little sister walked through my door surprising me with cupcakes and the finest sparkling cider that money can buy! Happy 28 weeks! Their visit lifted my spirit so much, so many thanks to them and to my husband for setting up this little surprise. What a stinker!

I’m kind of at a loss for words, but 28 weeks is a big deal! The chances for survival and life without long-term disability are exponentially better now than they were at 24 weeks when I arrived to the hospital. Although I’m soooo excited about how far we’ve come, my thoughts today have been with another one of my pPROM moms who lost her baby this weekend at 23 weeks and three days. I try to remind myself that for every sad story of honor, there are three stories of tiny miracles.

I spoke to one of the perinatologists this morning about getting a second round of steroids (to stimulate lung maturity) before the baby decides to come. It’s difficult to explain,but I’ll do my best. With the steroids, they need to be given 24 to 48 hours before delivery to be effective. This is tricky, because it’s impossible to predict labor. They won’t give me the boosters right now, because I’m showing no signs of eminent labor and the steroids can also spark an infection. If I have another bleeding episode or start contractions, they’ll likely administer the steroids.

To celebrate this magnificent milestone, we wanted to thank the doctors and nurses here at Abbott for taking such good care of me. T brought in cookies from Wuollet’s Bakery.

To go along with this big milestone, here’s a picture of my BIG belly. During Friday’s growth ultrasound, we’ll find out how much the baby weighs and how she’s doing. But by the size of her mommy, it’s pretty obvious this little girl is growing just fine! Go Baby Girl Tjader!!! Thank you all again and again for your love and support. I love to read your comments. Cheers to making it six more weeks!!!

 

Day 67: Getting tough August 20, 2010

Filed under: Bedrest — Aimee @ 2:53 pm

My apologies for the lack of updates lately. I’ve had lots of visitors, including Tyler’s family last weekend and early this week. Now that I’ve had some quiet time to myself, I’m looking hard to find that positive spirit that I know exists. The last two days have been very difficult for me. This extended hospital stay is taking its toll. The biggest problem is likely pure exhaustion, so when I get d0ne writing this entry, I will try to get some sleep. Again.

I have not been sleeping well at night. Aside from the normal aches and pains from pregnancy and waking every few hours to go to the bathroom, I also wake up every time I feel the slightest trickle of fluid. I’m up every morning at 6 a.m., if not earlier, and napping during the day around here is non-existent. Murphy’s Law runs rampant in the halls of this hospital. The moment I start to drift off, someone barges into the room: nurses, cleaning staff, nutritionists, massage therapists, mailroom workers, doctors, guests of other patients walking into the wrong room, etc. I miss having control of my life. And I miss my privacy.

Those complaints — and believe me, there are many, many more — had me in quite the mood yesterday. I was feeling sorry for myself, I guess. And the further along I get in this pregnancy, the scarier it gets. You might think it should be just the opposite, but with that HUGE 28-week milestone on the other side of this weekend, everything is becoming so real. Our daughter will be here between now and six weeks from now. Although she’s been doing well so far, I am scared to death of what she’ll be like when she gets here. Will her lungs work? How tiny will she be? There is also the all too real specter of disability. Will she have lasting physical and mental challenges? Will she suffer?

In my crabby state, I logged in to check updates on the pPROM support site. One of the moms who I’ve been in touch with — she lives in the Twin Cities — had her baby early this week. She was 24 weeks and five days old, and weighed 1 lb., 4 oz. She lived for four hours, but her little lungs were just too fragile. I read the words and became stricken with grief, anger, fear and guilt. Guilty because I just spent an entire day wallowing in self-pity over the fact that my breakfast arrived cold and half the items were missing; that one particular nurse apparently doesn’t know how to knock before entering and instead cheerily says, “Knock, knock!” after she’s already halfway in the room; and that I don’t know how we’re going to pay for mounting hospital bills that have begun to arrive.

Well I’m certain my fellow pPROM mom who lost her little girl this week would gladly trade places with me. She’d love to lay in this hospital bed for as long as she needed to if it meant holding her baby inside just one more day. Instead, she had to say goodbye after just a few short hours and months of fighting. I’m so so sorry for her and pray that she and her family can find peace and comfort in the coming days.

After I cried and prayed, things got much more difficult. The baby had a banner showing on her monitor strip, but when I went to the bathroom, there was blood. Lots of blood and a quarter-size blood clot. I called the nurse. She put me back on the monitor and waited to hear from the doctor. The baby looked great as usual and I felt like my normal self — no contractions. The doctor wasn’t too concerned, but wanted me to report anything else and said they’d watch me closely. Bleeding is very common in patients with ruptured membranes and I knew this. Which is why when I saw the blood I wasn’t entirely surprised, just disappointed that I was another pPROM mom with no fluid AND bleeding. I bled throughout the night and got virtually no sleep. Part of me expected to be wheeled off to the OR. I laid in bed thinking, “Maybe tonight’s the night.” But morning came and I’m still pregnant as ever.  The  bleeding tapered off and this afternoon, it appears to have completely stopped. It could start up again or it could have been a fluke.

I just want everyone to know that I’m OK. This is getting much harder with each passing day, but I know I can do this. I have to. Every day I’m here is a gift to my daughter.

 

Day 62: Happy two months August 15, 2010

Filed under: Bedrest,Milestones — Aimee @ 10:32 am

On June 15, our lives changed forever and we began the scariest journey of our lives. I will never forget that day and the bleak outlook we were given. I never imagined we’d make it this far, but here we are and I must say things look quite different. Today marks two months of bedrest, two months since I’ve worked, driven a car, wore real clothes and makeup, cooked a meal, walked my dogs, etc., etc., etc.

The quiet time we’ve spent with our little girl during this time is indescribable. At 18 weeks, we loved her. But here at nearly 27 weeks, we are feeling that one-of-a-kind love you can only have for a child. We call her by her name, talk about her future, and choose to remain impossibly positive — all for her. Soon, I will start singing her lullabyes and record songs and books so she can listen to our voices while she grows big and strong in the NICU. I will write more about this in another post, but we are already having a very unique experience with our daughter. For that, despite the fear, lonliness and trepidation, I am forever grateful.

Mom and Dad came for a visit yesterday. Although I tried my hardest to talk them out of it, because of the long four-hour drive, they were insistent. I’m glad they came. We ordered Chinese takeout for lunch, Mom painted my toe nails and we sat outside with ice cream cones. I hadn’t been outside all week … heck, I hadn’t even been out of my room, so it was a great day for me. They came bearing gifts, too: snacks, lotion, nail polish and a few baby outfits that my 4-year-old niece Jenna picked out for her cousin. Speaking of cousins, do any of you have someone special in your life that you call family even though you aren’t? My “cousin” Amanda sent a care package filled with wonderful things for me and baby. I can’t wait to see our girl in those adorable TINY pink and purple outfits. She’s going to be the best-looking baby in the NICU! Thank you, John, Amanda and girls. You really touched our hearts today.

Later in the evening, Tyler’s brother, wife and our nieces, Annie and Emily, came for a visit. They’re in town for a Twins game and school shopping, so they stopped up for a bit and we ordered pizza. Ok, ok, it wasn’t the healthiest day of eating, but it was GOOD! T’s brother Sam and his girlfriend Kelly also came. Emily turns 8 next week, so Tyler picked up cupcakes and we had a little mini birthday party.

After such great company, I was exhausted last night. I fell asleep before T, which doesn’t happen that often. I had a very restless night of sleep. I’m incredibly sore. I imagine it’s the result of extended bedrest, but I need to figure something out. My back and hips ache most of the day, but especially at night. I don’t have a full-length mirror in my room — which is probably a good thing — but I can tell my belly is getting bigger. I looked down at my legs last night and wanted to cry. Any hint of muscle I had before, is gone.

(I’ll get back to whining about my disappearing figure in a bit, but holy cow! One of the peris just came in, one whom I’ve never met before. Before he left, he said, “You’ll get a baby out of this. Everything’s going to work out!” Although I truly believe that in my own heart, it’s so nice to hear it from a medical professional, too!)

Anyway, I’m afraid the recovery from bedrest and a likely c-section is going to be another difficult leg of the journey. I’ll worry about it when I get there, but I often wonder how I’m going to find time to build back my physical health, while pumping every three hours, coming to see the baby at the hospital and going back to work at some point.

Finally, I know my writing can be sappy and emotional at times, and this day is no exception. If you’re easily moved and don’t feel like sobbing at your computer, take note and skip watching the video below. This is a heartwarming video with a happy ending. It illustrates what I’m going through, but sometimes cannot verbalize. I connect with so many parts of her story: as a couple, realizing it’s not our decision to make and choosing to leave our baby’s fate in the hands of God instead of termination; as strong as people think I am, I’ve never felt so powerless, vulnerable, scared and weak; the thankfulness I feel inside for having my husband beside me; and questioning how we’d feel having a child with mental or physical disabilities. Mia’s miracle and so many others, including the mamas and babies who’ve gone before me on my pPROM support site, give me hope and strength to lay in this hospital bed as long as my baby needs me to.

In case the video doesn’t show up, here’s the link: The Miracle of Mia

 

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.

 

Day 59: Baby’s first BPP

Filed under: Updates — Aimee @ 9:38 am

Whew! I have so much to write about, so I think I’ll break it up into a couple of different posts. So coming later today: accupuncture nightmare, my first knitting project and hospital food surprise.

Yesterday, Baby Girl T had her first biophysical profile (BPP). This is a series of tests to measure her overall health. It typically includes a nonstress test (she’s been passing those twice a day since we arrived) and an ultrasound. During the ultrasound, they measure baby’s muscle tone, fluid level, breathing and movement. She gets two points for each area. Our girl got 8 out of 10. A solid B student.

She failed the breathing test, but that’s not a huge surprise. She did have a few breathing movements, but in order to pass the test, she needs to breathe consistently for 30 seconds. She doesn’t take actual breaths, but moves her diaphragm up and down to prepare for breathing once she’s outside. Babies don’t typically start practice breathing until 24 weeks, but they don’t consistently breathe until 30 weeks. And she was breathing during Friday’s ultrasound, so I’m not worried. Neither are the doctors. We’ll have a BPP done every week, so she has plenty of time ace it! Besides, she was sleeping for the first half of the test. It was fun to see her wake up and start squirming around.

She passed every other area, including the fluid measurement! That doesn’t mean she has adequate fluid, but rather at least one pocket that measures 2 cm vertically or more. We had one pocket with 2.1 cm and another pocket with 1 cm. The other two pockets had fluid, but they couldn’t measure them because one had the baby’s head in it. The other had part of the cord in it. They cannot measure any pockets with baby parts or cord.

I’m quite happy about how well she did and have no doubt that she’ll pass the breathing portion soon.

 

Day 56: 26 weeks!!! August 9, 2010

Filed under: Milestones,Sunny days — Aimee @ 10:52 am

I can’t believe I’ve been in the hospital for two weeks and on bedrest a total of eight weeks. Already! But who’s counting? It’s finally starting to sink in that we WILL have a baby to bring home in November. Although I’ve always been hopeful about the outcome, I never wanted to get ahead of myself. I knew the possibility of saying goodbye to our first child was very real.

I guarded myself by not thinking about the future much more than the day in front of me. I haven’t read my parenting books, don’t know a damn thing about breastfeeding, have no clue what we need in terms of raising a baby. But I think I’m now ready to venture down that exciting road.

Both T and I have been talking about what it will be like to have a daughter. We wonder what she’ll look like and what kind of hair she’ll have. Anyone who knows Tyler knows he has extremely curly, afro-potential, jet black hair. I had a head of white hair as a kid, so we surmise she’ll have a blonde afro. Most of our friends have little girls, so all the daddies have been plotting an all-girl band when they grow up.

Tyler asked me the other night, “Isn’t it weird to think we could be parents in just a few short weeks?” I told him that we already are in every sense of the word, but yes, meeting her on the outside much earlier than we expected is definitely weird. Baby Girl T could arrive at any time, but she’s managed to happily hang out inside for eight weeks without her swimming pool, so I’m confident she’ll hang on for another four weeks at the very least.

We are already so bonded with this baby. This is our first and I don’t know what it’s like to have an uncomplicated pregnancy, but I have to imagine I’m more connected to this baby now than I would be had the pregnancy continued to be uneventful. That’s not to take away from the very real bond that mothers have with their babies in a normal pregnancy. But I’ve done nothing but spend the last two months thinking about this baby and her health. There are very few distractions to direct my focus elsewhere.

I watch her heart beating on the monitor with such strength and determination twice a day every day. I pay attention to her every movement so that I can tell the nurses if her activity level changes. I’m a proud mommy every day, because she never gives the doctors or nurses a hard time, she’s showing up all the other babies with her skills on the monitor and she’s growing just like she should. I’m starting to envision a family of three instead of two. I think of all the ways we’ll make up for lost time next summer: baby’s first trip to the State Fair, going for runs along the river while she naps in the jogging stroller, and a Blanchette-style baptism in Pike Bay. I drink from my water bottle all day long and envision her peeing, filling up her pool, taking a drink and growing those lungs. Weird, right? But these visions are calming, and at times, they’re all I have.

Still, the biggest risk we face is pulmonary hypoplasia, which basically means incomplete development of lung tissue. And we just won’t know the extent of the problem until she arrives. We continue to ask you all for your prayers and support. I’m 100 percent convinced we wouldn’t have made it this far without all of you on our side.