Baby Tjader's Journey

A life undefined by pPROM, prematurity and Cerebral Palsy.

Day 47 October 31, 2010

Filed under: Lila,Photo/video updates — Aimee @ 12:40 pm

Happy Halloween!!!

 

 

 

 


Just mere hours after Lila’s doctor told us she wasn’t progressing fast enough with her bottle feedings and therefore probably wouldn’t be ready to come home by her due date, Lila showed everyone who’s boss. She went from barely completing one full bottle feeding in a 24-hour period, to completing four! She needs to finish eight feedings by bottle or breast in 24 hours, so we still have a lot of work to do, but she’s getting there! I swear this kid has been determined to prove everyone wrong since the day she was conceived. She’s one determined little gal.

Lila’s oxygen requirements are much improved over the past few days, so this morning the doctor ordered her O2 flow to be turned down from 1.5 liters to 1 liter. We’ve tried this once before and she had to be turned up again. We’re still crossing our fingers, but so far today, she’s handling the lesser flow beautifully. The doctor may switch her to a regular flow cannula by the end of the day if she does well. This is important, because if Lila were to go home on O2, she’d go home on a regular flow cannula, not a high-flow cannula. One more step closer to home. Mission: HOME!

 

 

Day 44 Part II October 28, 2010

Filed under: Lila,Photo/video updates — Aimee @ 5:15 pm

“When does Lila get to come home?” That’s the question everyone wants an answer to, and believe me, we do too. But apparently, crystal balls don’t exist in the medical field, so we don’t yet have the answer. We do know that she won’t be home this week or next week. We hope she’s home by her original due date of Nov. 15, but it’s possible she won’t be ready that soon, either. Crossing fingers and toes.

Lila’s doctor this week said she thinks Lila is likely to go home on oxygen. This isn’t ideal, but if it means having her home with us, I’m all for it. We’ll make it work. There isn’t anything new to report. She weighs 5 lbs. 15 oz.  We are still working hard on bottle and breastfeeding. At times, it can be frustrating, because every nurse has a different idea of what’s best when it comes to feeding. I’ve finally realized that I need to do what I feel is best. They keep telling me, “You know your baby best,” but up until this week, I didn’t believe it. How could I know my baby best when they are the professionals? But as I spend more time at the hospital (most of the day), I take pride and comfort in knowing that I really do know my baby better than any nurse or doctor ever could. It makes me feel good when the doctor asks, “How do you think she’s doing today, mom?”

So what do I know about my baby? I know that she is a fighter — we all knew that from the beginning, right? She also has a very sweet disposition; she’s curious of her surroundings; she likes the little aquarium mobile in her crib and fights to stay awake if it’s on; she’s an ambitious eater, but doesn’t quite have the stamina to finish a full feeding by mouth; she sleeps best on mommy and daddy’s chest; she enjoys her baths as long as she doesn’t get cold; she’s calm when she’s awake, but lets us know when she’s hungry; she requires less oxygen support when mom and dad are around; and she loves loves loves her pacifier.

We have been crazy busy lately, hence the lack of posts. We’re getting ready to move, but not before getting the current house ready for Lila to come home to first. Her bed is all set up in our bedroom. We’re ready. We just need a baby. I finally had a baby shower last week, which was wonderful. Although most of my friends who have babies brought them with and it made me sad that I couldn’t have my baby there. There are constant reminders that my baby is where we don’t want her to be. At my six-week postnatal appointment yesterday, the nurse checking me in said, “No baby with?” This kind of thing happens all the time. Then I have to explain. Everyone’s always really nice about it, though, and usually asks to see pictures. And of course, I show them LOTS of pictures. Here are a few.

Quality snuggle time with Nana in her new room in the ICC.


One of Lila’s favorite NICU nurses made her this graduation cap to celebrate her move to the ICC.


A little playtime with Daddy.


Dinner time!


Wide awake for her 9 p.m. feeding.


Little Lila has her days and nights a little backward. Sleeping beauty during the day.

 

Day 44 Part I

Filed under: Lila,Photo/video updates — Aimee @ 4:25 pm

I keep talking about the amazing women I’ve gotten to know online during this experience, but I can’t say enough about how supportive they’ve been. They are the only ones who really know what we’ve been going through the past four months. Aside from the miracle of our daughter, if there’s one thing I can be grateful for when it comes to my water breaking at 18 weeks, it’s my membership into the pPROM sisterhood. If you’re questioning faith in humanity, continue reading. This may change your mind.

When I was ordered to bed on June 15, my computer was my lifeline, my sanity. I spent hours researching pPROM, searching for success stories and the women behind them. One of those “angels” is Jessica. I found her on Facebook and got in contact with her right away. She offered to call me — from her home in Vancouver, BC — and she did. We talked on the phone for at least an hour-and-a-half. She gave me hope by sharing the miracle story of her son, Caleb. It was eerie how similar our stories were. Our original due dates were just a few days apart — hers in 2009, mine in 2010. And it turns out, she’s from Minnesota. Despite the health care professionals’ endless reminders of the struggles Lila would face when born,  Jessica and Caleb were proof that our baby would be ok and inspired me to remain strong those 13 weeks in bed.

Jessica kept in touch with me throughout that time. She was my cheerleader. Well last week, I got to meet Jessica and Caleb in person. Back for a visit to Minnesota, Jessica made time to come to the hospital to meet us. It was so great to hug her and Caleb and thank her in person for all that she’s done for me. Caleb is 14 months old (11 months adjusted) and just days away from walking. In fact, I bet he’s already taken his first steps. Thank you, Caleb and Jessica, for continuing to instill hope that Lila, too, will take her fist steps in no time.

Here’s a few photos from Caleb and Jessica’s visit, along with a link to a video detailing Jessica’s pPROM story.

 

 

Joe & Jessica – A Baby Miracle from Coastal Church on Vimeo.

 

Day 37 October 21, 2010

Filed under: Lila — Aimee @ 5:30 pm

Well, I can no longer use the word “NICU” in the titles. Lila has officially graduated from the NICU to the Infant Care Center (ICC).

She had been working harder to breathe in recent days, so they increased her O2 flow from 1 to 1.5 liters. So far, it’s made a huge difference. She’s breathing easier, her O2 requirements are down and she’s bottling like a champ! She took 30 of her 48 mls at her noon feeding today. The doctor said it’s important to get her working on her feedings. We can wean her O2 when she’s ready.

I downloaded an application to my phone so that I can update the blog without my computer. It’s not much fun typing on a phone, but will come in handy for quick updates.

 

NICU Day 35 October 19, 2010

Filed under: Lila — Aimee @ 1:28 pm

There are so many thoughts and emotions that fill my mind and heart every day, but I don’t always know how to verbalize them. As a writer, that’s very frustrating. Please bear with me as I try to unblock my mind. Disregard the incomplete sentences, poor punctuation and misspellings. Copy editors anyone?

I arrived for Lila’s 9 a.m. cares hoping to catch her awake for a little one-on-one Mommy time. Much to my surprise, my little night owl was wide awake for a long time! She’s doing great at breastfeeding, but gets frustrated after awhile because her bellly doesn’t get full as quickly as it does when she’s fed through her NG tube. Persistence is key. After I fed her, rocked her and tucked her back into her crib, I stepped out for a bite to eat. When I got back to the NICU, I turned the corner down her hallway and could hear her crying … wailing. The nurse couldn’t get her to calm down, so I picked her up and she stopped. What a wonderful feeling it was to be able to comfort my own child like that. Seriously, good stuff.

Today is a big day for Lila as she becomes a NICU graduate. She’s moving across the way to the Infant Care Center. We are so thrilled about this move. We’ll miss our NICU nurses (Ashley, Kelley, Shannon, Kris, etc.), but we know we’ll make new friends in no time and we hope some of our NICU nurses can visit. Her move to ICC has a bigger psychological meaning for us than anything. Sure, the rooms are bigger and they have their own bathrooms, but it’s one step to closer to having the entire Tjader family together under one roof.

Today is also filled with sadness as I fill out a card in remembrance of Natalie Evelyn Teegarden. I never met Natalie, or her parents, Steve and Jennifer. They live in New York. But when my water broke at 18 weeks, I found Natalie’s story and continued to follow her courageous six-month NICU journey until she went to heaven this week. Like Lila, Natalie was born early after being in the womb without amniotic fluid. This is where I find it hard to describe my feelings. It’s hard. Through the wonderful World Wide Web I’ve met so many women who were going through what I was going through. Fear. Unknown. Bedrest. Faith. Anger. Sadness. Natalie’s mom was one of them. I will never understand why some of these babies made it, while others didn’t, but I’m forever grateful to the women who chose to share their stories with me and the world. Another one of those people is Brandy. Her little boy, Clark, is 9-months-old. Like Lila, Clark was born early after Brandy’s water broke much too early. In closing today’s post, I’d like to share an excerpt from Brandy’s blog. Her words somewhat describe my feelings today and give some insight into what it’s like for a pPROM mom post-NICU. For a little inspiration, I encourage you to check out her blog: http://superboyclark.blogspot.com. And please pray for Clark and his entire family as he undergoes surgery tomorrow.

Loss
by Brandy Kelley

Here I am, at 5am, sitting on the couch I spent 71 days on last year.  I can’t sleep.  Exactly one year ago, my life changed forever.  I came to know the meaning of pPROM, I learned what it meant to fight for someone’s life.  Someone I didn’t really even know.

Looking back on this day a year ago still sends me to tears.  I can’t explain the feeling of making it to the 2nd trimester after a more-than-rocky 1st trimester, only to have your water break at 2am at 16 weeks.  I could try to explain it, but there really aren’t words.  I can’t explain being on bed rest for 95 days, but I can tell you that despite the horror of it, the fear of losing everything, that it was the easiest part.

I could never really explain the joy of Clark’s birth day.  Smack in the middle of the worst days of my life was the most beautiful day.  Seeing his tiny pink nose, the rest of him obscured in a tight swaddle of blanket was the most beautiful sight I have ever beheld.  I had all the faith in the world on that day.  All of my doubts and fears were dulled by the faith that God had heard the millions of prayers and Clark would have lungs.

There is no possible way I can explain the NICU.  For parents of micro-preemies and very sick babies, it’s not just some inconvenience.  It is their BEST case scenario.  Above everything, we wanted to be in that unit.  Being there meant we still had a baby.  There were moments of sheer terror, unexplainable frustration, tears of fear & of joy and those from being absolutely shell shocked for over 100 days.  I still cry every day for some reason related to Clark’s journey or something to do with premature birth.  Yep, I’m crying right now.

I awoke at 4 this morning to news that another of my pPROM/NICU moms had lost her precious baby after a hard 6 month battle.   I ask that you please pray for Jennifer & Steve Teegarden in the coming days and months.  Baby Natalie was a loved and wanted baby.  She put up an extremely hard and courageous fight and her parents wanted her here to love and raise.  There is nothing more unfair and heartbreaking than a parent losing a child.

May I just say that I was pro-life before all of this.  It would be more accurate to say that I am now anti-death.  As hard as we worked, as I’ve seen others fight for their children, I can’t comprehend how someone could end their child’s life simply because it’s inconvenient for them.  Keep walking for March of Dimes, lighting candles in memory of those lost, but please, never forget the real people behind those causes.

________________________________________________________________

Clark’s surgery is 3 days away.  I am terrified.  You don’t come out of a situation we’ve been in and ever want to walk back in a hospital.  You especially do not want your child going under the knife, being under anesthesia or on a ventilator.  And it’s not just the “I don’t want them to go through this” feeling.  It’s the fear of death, of the worst happening, for everything you’ve fought for & love to be gone in an instant.

We know, all too well, that it can and does happen.  Far too often.

I’m praying for a very uneventful surgery and hospital stay, and after what God has done for us I know, beyond the shadow of a doubt, that he can move mountains. But, I can’t explain how scared I am of something bad happening.  And don’t think for an instant we doubt His power, because we certainly don’t.   Please join us in prayer, specifically on Tuesday (when we meet the surgical team), Wednesday (surgery), and Thursday (the 1st full day of recovery).  Your prayers over the last year have been answered.  There is no limit to what God can do.

May I wrap this up by saying that Clark is 9 months old today.  He has blossomed so much in the past 2 weeks, it’s unreal.  He’s laughing at more people, returning smiles, almost sitting up, rolling everywhere and bouncing like crazy.  The love I have for this sweet boy is fierce and the most powerful feeling I’ve ever had.  I want to thank you for your prayers that made it all possible.

 

NICU Day 29 October 13, 2010

Filed under: Lila,Updates — Aimee @ 7:03 pm

We continue to count our blessings and thank our lucky stars for Lila and all that she’s overcome in such a short time. In hearing the doctors and nurses talk about her miraculous improvement, it’s apparent to us that we never really grasped just how sick our baby was when she arrived. We were just so thrilled that she was alive. Maybe we were in shock. Maybe it was by God’s grace that we didn’t fully comprehend the magnitude of her issues.

There’s so much to report since I last posted. Between twice-daily trips to the NICU, house-hunting and pumping, I’m finding it hard to carve a few minutes out of my day to update the blog. I will try to be better about that as I know there are so many of you anxiously awaiting the next Lila report.

Lila is 4 lbs. 15.9 oz. today. She’ll likely hit the 5-pound mark by tomorrow. She’ll outgrow preemie sizes soon. Doll clothes anyone? She changes so much every single day and I finally understand a parent’s yearning to be there for every little moment. Yes, I could stare at her all day long. I swear she gets cuter by the minute.

Lila made the big move from the isolette to a crib last week and it’s made all the difference in how we’re able to care for her. We can pick her up and hold her when we want to, we can reach down and kiss her head (which we do every five minutes, I swear), we can change her clothes and diapers without having to reach our hands through two tiny openings, we don’t have to look at her through plastic. In just a few short days Lila’s pimped out her crib with teddy bears from Auntie Meg and Bubbie, a quilt from London, and a mirror and mobile from Mommy.

She’s up to 40 ml of breastmilk every three hours. She took her first bottle last night and did really well, which is a huge milestone. Feeding is really the last hurdle that she needs to overcome before she gets to come home. We continue to work on breastfeeding. The trick is catching her when she’s awake, which is another reason I’m spending so much time with her.

Ok, now to the tough stuff. Remember a few weeks ago when I wrote about some difficult news we’d received? Without going into too much detail, I feel I’m ready to talk about it a bit. About a week after Lila was born she had a brain ultrasound, mainly to check for hemorrhaging. There was no hemorrhaging, but the doctor saw something else worrisome regarding the ventricles in her brain that required a follow-up ultrasound a few weeks ago. She had a third scan yesterday.

To make a long story short, Lila developed some cysts in her brain, likely caused by insufficient blood flow and oxygen supply to her brain. The cysts indicate there’s been some brain damage. This is the most common brain injury seen in preemie babies. How is this likely to affect Lila? There’s no way to tell for sure. Add this to the list of things that we don’t know how it happened or how it will play out. Without making any promises, Lila’s doctor doesn’t believe this will affect her cognitively. Of course, there’s always a chance, but she’s more likely to be affected physically. It could take her longer to reach major motor milestones. She may not sit up until she’s 10 months old. She may not walk until she’s two. She may need braces to walk at first. She will likely need physical therapy to overcome spasticity, or, stiffness in her legs, hips, etc. The damage in her brain could affect her more severely, but I’m not willing to accept that. All I can say is that she’s already shown us what a strong girl she is and I won’t put it past her to overcome a million more obstacles. She will lead a full life and will be given every opportunity she could ask for and more. Indeed, she has a purpose in this life.

Last day in the isolette

Cozy in her new crib!

First bottle

Pimped out crib!

 

NICU Day 22 October 6, 2010

Filed under: Lila — Aimee @ 3:05 pm

Today the doctor said Lila was getting boring! Just what I like to hear! Of course she’s not boring to me, but I, too, revel in the fact that things have been relatively drama-free — at least when it comes to Lila — for awhile now. Knock on wood. She’s doing so well! She got the IV out of her scalp a few days ago. We gave her a sponge bath yesterday, which she totally loved, and have been getting lots of snuggle time in. She weighs 4lbs. 4 ounces now, so she’s getting weaned from her isolette. They just turn down the temp in there to see if she tolerates it. My guess is that she’ll be moved to a crib within a week. When they do that, as long as she’s still doing well, I think she’ll get transferred to the Infant Care Center. This is a big step, because babies in the ICC still require care, but not as intensively as in the NICU. She’s going to be home before we know it …

… Which means we need to find a new house!!! What a nightmare finding a place is. It’s tough to be out there looking at less-than-desirable rentals when I’d rather be at the hospital with her. Well I’m off to look at another house, then to the hospital. Here’s a couple of pictures taken this morning after being held for two hours. All tuckered out!