Monday, October 12, 2015

Worry if it Helps

I spent much of last Friday in tears. The actual diagnosis from the day before finally was sinking in. I cried on and off all day and it was big, heavy sobs that I just couldn’t stop. My anxiety was high and panic was sitting below the surface. Eventually I left work because I couldn’t sit in my office pretending to be ok.

I called Todd and tried to explain. I was feeling so sad and heartbroken. He didn’t understand. He was relieved that we had a game plan, and even more so that she has a fixable problem. He was relieved after our urology consult, but the farther we got away from the news the worse I was feeling. In my head I knew everything he said was true. It is a good thing that we know exactly what is going on with her kidney and it’s an even better thing the doctor’s know how to treat her condition.  No, surgery is not ideal, but at least we’re not dealing with something that is hopeless. Rationally there is much to be hopeful for.

Yet I couldn’t get there in my head. My heart was flooded with fear. There are so many things that can go wrong between now and surgery to fix her problems. I couldn’t concentrate on the good news because I was stuck in the fear.

I’m afraid the ureterocele will continue to grow and will block the right ureter from draining properly. This is a fear that I’ll carry with me for 13+ more weeks until her due date. Every other week I will go to the Maternal Fetal Specialist and wait to learn if my amniotic fluid levels have gone down, which means things are getting worse. That the ureterocele is growing. I’ll hold my breath as the ultrasound is performed, hoping Dr. Gomez doesn’t say he thinks she needs to come early.

I’m afraid an early delivery will mean a NICU stay. I’m afraid of riding the NICU rollercoaster that I’ve seen other’s endure.

I’m afraid that once she’s here, regardless of when that happens, her wet diaper output won’t be normal, which would indicate that we can’t wait to fix the problem. I’m afraid she’ll need surgery right away.

I’m afraid the tests that will be performed on her at 2 weeks old will be difficult on her little body. I’m afraid of the results. I’m afraid these results will lead to surgery before she is 6 months old like we’re hoping.

I’m afraid for her surgery, of her being cut open and the risks that will entail. Anesthesia for one. Complications another.

I’m already worried for all these possible outcomes, all these possible divergent paths along her road.

So what does this do? It just causes fear and anxiety in me. It doesn’t help Bridget. I know this. If anything, my stress level will negatively affect her. Again, I know this.

Worry if it helps. This is one of my mom’s sister’s mottos. I saw her yesterday and she reminded me of these words.

Worry if it helps.

It doesn’t help to worry.

So I am trying my best to stay positive and to focus on the good. I’m focusing on Thursday when I’ll be 27 weeks and officially in the 3rd trimester. I’m focusing on the fact that Bridget is already over 2 pounds and is growing stronger every day. I’m focusing on the doctors that are monitoring me now and who will be taking care of Bridget once she’s here. They are capable and we are confident in their ability to navigate these choppy waters. And I’m focusing on the love in my life – my three boys, my family and the support network that has surrounded us through these last 7 weeks. I know I’m not alone and I am thankful for that.

I know there will be hard days ahead, but being sad about those now isn’t helping Bridget and they’re not helping her momma. All we can do is today. So today I’m going to delight in her kicks and the love that’s surrounding us.

I’ll do the best I can today. Some days I’ll fail, but some days I won’t. And I’ll just keep hitting repeat every morning. Yes, I wish we weren’t facing any health issues with this pregnancy, but I am thankful it’s not something worse.

I’ll get to meet this sweet girl sometime over the next 3 months. Our family is growing. And that alone is such a blessing.

And as one of my favorite bloggers (Glennon over at Momastery) says: We can do hard things.

We can because we have to. Because really, what other choice is there?

Worry if it helps.

Friday, October 9, 2015

2 for 1: Not Always a Good Thing

This has been a bit of a whirlwind week. On Wednesday I had my bi-weekly appointment with my Maternal Fetal Specialist in Atlanta. Todd wasn’t able to make the visit with me so I took the opportunity to surround my doctor’s visit with coffee and lunch dates with girlfriends – a nice perk of going to Atlanta every other week. The appointment was long as Ms. Bridget was uncooperative and in a difficult position (she was breech with her head up by my right rib cage and her feet down low on my left side). So after a lot of waiting and prodding her to move, she final repositioned enough for the doctor to get the kidney pictures he needed. In a surprising turn the fluid accumulation in her kidney had dramatically decreased. The doctor hesitantly said he was “pleasantly surprised” and “pleased”. I pushed him for more information, but as usual he was reluctant to make any firm diagnosis. He said I would still come back in two weeks to continue being monitored but I left his office feeling good. Things seemed to be moving in a positive direction.

Yesterday Todd and I met with a pediatric urologist at Georgia Urology – Pediatrics in Atlanta.  They are connected with CHOA and Dr. Smith was one of the nicest doctors I’ve yet to encounter. He had a lovely bedside manner, was thorough, patient and kind. I think his approach helped keep my nerves in check as he explained what exactly is going on with our sweet girl and I’ll do my best to explain what he said. Unfortunately, the decrease in fluid wasn’t us moving in a positive direction as I’d hoped the prior day.

Bridget has a duplicated collecting system (also known as a ureteral duplication) and a ureterocele on the left side. So while each normal kidney has one ureter (the tube the carries urine form the kidney to the bladder), Bridget’s left kidney has two ureters rather than one.  And common with this condition is the occurrence of a ureterocele, which is an enlargement of the portion of the ureter closest to the bladder due to the ureter opening being very small (so in other words, that portion of the ureter closest to the bladder swells up like a balloon).  This obstructs urine flow into the bladder causing urine to back up the ureter toward the kidney.  Bridget’s ureter with the ureterocele drains the top half of the left kidney while the other ureter drains the lower half.  The doctor showed us on the ultrasound how the tissue on the lower half of the kidney looked like normal kidney tissue whereas the upper half of the kidney does not look normal.  However, he was clear that it is much too early to tell how much, if any, function the entire left kidney will have.

This is the picture the doctor pulled up to show what is going on.

So we are thankful that we know what we are dealing with and we are confident that we’re in good hands with Dr. Smith.  However, the diagnosis didn’t come with the best of news. This condition will require surgery, likely when she is 6 months old, if not earlier. She will start a low dose antibiotic the first few days after birth as this condition can lead to infection. Then at 2 weeks old we’ll go up to CHOA for some tests – an ultrasound on Bridget as well as a VCUG which is an X-ray exam of the bladder and lower urinary tract. Once they know the extent of the damage to the kidney they’ll decide what the surgery will need to entail and the goal will be to wait until she’s 6 months old for that surgery, with month to 2 month monitoring until it’s go time. Obviously, knowing our daughter will need surgery as an infant is a scary thought. I’m trying to concentrate on the fact that it IS fixable, but I’m having a hard time with that today.  This whole thing is making Julian’s helmet experience seem like a walk in the park yet at the time it was anything but, with lots of tears from yours truly. So I’m a little nervous how I will handle all this once it’s time for tests and procedures and tiny IVs putting my little one to sleep to be cut open. I’m having a hard time not getting ahead of myself with all this. Clearly.

And of course there are still some hurdles to get past over the next few months. For one, Dr. Smith told us that her right kidney is slightly dilated as of yesterday. It wasn’t dilated two weeks ago. We knew this was a possibility and the cause could be that the ureterocele is growing larger causing a blockage of the right ureter – meaning that the right kidney may not continue to drain properly. If this continues, my amniotic fluid level would go down and she would have to be delivered early.  This is the worst case scenario. He doesn’t seem to think this will happen, but he acknowledged that is a possibility, which is why I’ll continue going to the Maternal Fetal Specialist every 2 weeks. If this happens, I believe her surgery would be required shortly thereafter. And whenever she is born we will have to monitor her wet diaper output closely to make sure she is properly voiding. If she is not, this is a sign that the kidneys aren’t working/draining properly and intervention would be needed sooner rather than later.

So that’s where we are. As of yesterday I am 26 weeks along, and thankfully the odds of her survival even if she were to be born today are good, but we really hope the right kidney can continue to drain properly for a while longer so she can get bigger and stronger before she’s born.

I’m glad that we know exactly what is going on now. And even more thankful that it can be fixed once she’s here. I know in my head this is all positive news and we could be looking at something much, much worse. But it’s my heart that is having a hard time thinking of this little one having surgery so young. I’m sure she’ll be strong and able handle anything she has to endure; I just hope I can be the same.

Thursday, October 1, 2015

25 Weeks. Round 3

How far along? 25 weeks. (Go here to check out my 25 week survey with Julian.)

Next OB appointment?  Next Wednesday with the Maternal Fetal Specialist in Atlanta. And then the next day we meet with the pediatric urologist at Children's Hospital of Atlanta.  I'm hoping two things for these appointments: (1) Bridget's kidney "cyst" isn't getting any bigger and remains unchanged from the last appointment. (2) I receive some sort of comfort around the whole thing. This will be our first appointment where we know that our main/only issue is her kidney. I'd love to know what the urologist thinks we'll need to do after she's here. I'd just like a road map, although I know I'm unlikely to get one as the journey is still in motion.

Total weight gain/loss? 20 pounds as of last week.  I gain weight when I'm pregnant. What can I say?

Maternity clothes?  Yup. And I've broken my promise to not buy any more maternity clothes. What I had just didn't fit! So I got a few new tops from ThredUp - have you heard of them?  It's basically an online consignment store and the best part is that you can return what doesn't fit/you don't like. So I bought 5 things but am only keeping 2.  Use this special code to earn $20 off your first 2 orders ($10 off order #1 and $10 off order #2: ).  I also bought a pair of jeans from Poshmark, but they haven't shipped yet so not sure if they fit. Downside is that they are not returnable but I'll just sell them if they don't fit. I did buy a few things during a 40% off sale but am returning 3 of the 4 items.  So while I'm buying a few things, I'm only keeping what I'll actually wear.  This is progress.

Stretch marks? The old ones are peeking back out and getting darker. Thankfully if history repeats itself they will fade back into the distance once this pregnancy is over.

Sleep? Meh. I still get up every night to pee. And I toss and turn, but I can't complain too much. 

Best moment last week? Getting the call that Bridget's microarray results came back NORMAL.  I hung up the phone and sat at my desk sobbing for 5 minutes before I could even call the husband. I knew I'd been holding my breathe until these results came in, but I didn't realize how much. The sense of relief is overwhelming. I know she's not 100% "healthy" but to learn that she does not have a genetic abnormality was huge. We can handle her kidney. I know we can. And now that the genetic question marks are answered positively, we can move on and concentrate on what exactly this kidney defect will mean.

Movement? Every day. Sweet girl is a mover, but nothing like her brothers were in the womb!

Food cravings? Miso soup and Mexican chicken soup. I was sick last week and soup was the only thing that sounded good.

Food aversions?  Nothing really.

Gender? Team Pink!

Labor signs? Nope.

Belly button in/out? In.

What I miss: Wine. A good glass or two of red wine would've been great these past few weeks.

What I am looking forward to: The final result of our house renovation. Bridget's room is in full swing and the kitchen is chaotic but coming together.  The hardwood floors go down tomorrow!

Milestones: We hit viability baby!  I really hope sweet B hangs out inside for a few more months but it's comforting to know she has a fighting chance even if she's born now.  But baby girl, stay put!  Please!

Monday, September 21, 2015

Waiting and Waiting

Today is the 3 week mark since my amniocentesis.  On the bright side, I didn't miscarry from the amnio as that window is 3 weeks after the test.  On the negative side, we're still waiting on the microarray results. And the longer we wait the more my mind spins.  Are they waiting for the cells to culture or are they trying to interpret the cultured cells?  Is something amiss and they're trying to figure out what it means?

I'm 23 weeks and 4 days today. So there will be no hard decision to make. Even if we were to get the results tomorrow, and if they were horrible, the time frame would be too short to do anything. I would have one day to make the worst decision of my life and logistically it probably couldn't even be carried out. I'm not sure how I feel about it. I'm somewhat relieved. I'm probably really relieved. The thought of having to decide what to do if makes my stomach churn. Now I know that I won't have to decide.  Yes, there is a sense of relief.

Yet I still don't know if there's a genetic issue. And I don't understand enough about what the microarray is looking at to know what sort of genetic issue we could be looking at. But that's where we are. So I'll continue hoping that Bridget's genes aren't wonky. If they are, we'll deal with it.

So it's time to turn to her kidney defect now that I know the pregnancy will continue. I have been trying to not get too attached to Bridget in the event that the genetic results were awful. I've failed in that endeavor. I'm attached. I have been for weeks. Months, actually. And now that the time clock has run, I am frightened about the course the next 17 weeks could take. I know there's a chance the right kidney could stop working properly. I know there are complications that can occur at any time. So I have tried to not get too excited about her arrival.  I have not bought her one thing. I've held pink onesies in my hand. I've taken a pint-sized star splattered sweater up to the register, only to return it to the rack. I've searched big bows on Etsy. Yet I can't buy anything pink yet. I'm so worried she won't get into my hands at the end of this.

I'm normally a glass half full type. I know I should be thinking positive thoughts and believing that everything will be ok. But for some reason, I can't.  I am so sad and find myself in tears most days at some point.  This is my child. My baby. I want so badly for her to be healthy and I am praying for her health every single day. I am hoping for it with everything I have. Yet I am still so fearful. I don't know how to let go of the fear. I don't know that everything will work out. And no one can reassure me that it will because no one can know what will happen.

The doctor told me to enjoy my pregnancy. I know that a defect in a kidney is small beans compared to some other birth defects we could be looking at instead.  But my emotions are flooded and I don't know how to listen to the logic in my brain. I hope to get some comfort at my doctor's appointment on Wednesday. I pray he'll give me some good news that will pull me out of this depressive funk I'm in.

I know I am not being the strong mother that Bridget needs. I am not being the mother my boys need. I need to find a way to get past the fear and settle in for whatever may happen. I'm just not quite sure how to do that.

P.S. It has been brought to my attention that this post sounds as though I'm not functioning.  Perhaps it was a bit melodramatic. I am functioning on a day to day basis.  I'm still working everyday, showering most days and taking care of the boys (although Todd is being super dad, so that HAS helped). So please don't read this as though I'm not getting out of bed on the regular. I am.  I'm just not my usual happy self.  I'm scared and nervous. But I'm not depressed in the clinical sense. I've been there. I know what that entails and this is different. My tears right now are related to my worries and my heartbreak over what could happen. Although, to be fair, a therapist is probably not a bad idea.  So thanks to my dear friend for suggesting it. I'm glad I have friends who say something when they're worried about me. Xoxo

Friday, September 18, 2015

Renovation Day 3

Sweet Bridget's room is starting to take shape!!  It's so exciting to see all the changes taking place in our house and this nursery is the icing on the cake.  We added it on to the kitchen renovation at the last minute and I'm so glad we did.  Her nursery gives me somewhere positive to funnel all my nervous energy until she's here.  Because she will get here.  

Happy Friday y'all!!


Thursday, September 17, 2015

23 Weeks. Round 3.

I know I've missed the last few weeks of updates, but in an attempt to get back into the groove of this pregnancy, I'm back to document my weekly status.

21.5 week bump
How far along? 23 weeks today! (For comparison, go here for my 23 week questionnaire with Julian).

23 week bump.  In our bar/temp kitchen.
Clearly we need to update it from the 1970s.

Next OB appointment? Next Wednesday.  I see my OB here in Macon Wednesday morning for my 24 week checkup. I'm scheduled to meet the other midwife in the practice and after that will decide whether or not I'm going to switch OBs. I go back and forth on whether or not I think it'd be best to find another practice to deliver Bridget. The OB hasn't done anything "wrong" but I'm just not in love with them. I loved my OB in Atlanta and I know she's a hard act to follow. I feel like my MFM in Atlanta has Bridget's well-being under control, so as long as he thinks I can have a regular birth then I'll probably stay with my OB here.  After two births I know that, no matter who your OB is, the nurses at Labor & Delivery are the ones there to support you during the labor and you can't pick them. 

Next Wednesday afternoon I see the MFM in Atlanta for my next appointment to check on Bridget's kidney and my fluid level. I'm anxious for this appointment already. I want a peek at our girl and reassurance that she's thriving.

Total weight gain/loss? No clue. Probably big gain. I feel fat.

Maternity clothes?  Yes and they're getting old already.  I'm trying to not do any shopping but I have very few work appropriate maternity tops to wear that fit and a handful of my maternity dresses are too big.  So I did get a few more items from Gap today during a 40% off sale.

Stretch marks? Nothing new this pregnancy.

Sleep? I have a hard time falling asleep most nights but then I can't get out of bed in the morning.  It's a vicious cycle

Best moment last week? Breaking ground on our kitchen renovation. Our house is a hot mess right now, but that means we're close to our beautiful new kitchen.

This used to house our stove, trash compactor, sink & dishwasher plus upper cabinets!

More demo!

Demo day 2.  Goodbye ceiling and ugly light fixtures!

Look at the pretty wallpaper hiding behind the cabinets.
Day 2. The door to the dining room is gone and the opening is wider.
Let there be light!

This desk and upper cabinet was moved from the kitchen into our laundry room.
Command central's mess can now be hidden away behind a closed door!

Movement? Yes! Although, I have an anterior placenta for the first time so I don't feel her move nearly as much as I did the boys.

Food cravings? I don't have any serious cravings, I'm just generally hungry.  I fear the fun rapid-weight-gain stage of pregnancy has begun.

Food aversions? Not really.

Gender? Team Pink!

Labor signs? Nope.

Belly button in/out? In but starting to look funny.

What I miss: My carefree pregnancy before the 20 week ultrasound.

What I am looking forward to: Going to the MFM next Wednesday and seeing Bridget.  I'm also excited for this kitchen renovation.  We even decided to add another bedroom to our house to give Bridget her very own room without having to put the boys in a room together. The contractor opened the wall to put in her bedroom door today and he's starting on the wall tomorrow!  I'm excited to plan and decorate a girly nursery.

Hallway looking into what will be Bridget's room!  This will be her door.
The electricians have some work to do...

Pink fabric samples!
 The glider is already covered in the plaid/houndstooth fabric in the bottom right and my mom isn't keen on recovering it again, so we're trying to find other fabrics to complement it.

Milestones: Julian moved into a big boy toddler bed this week!   And Lukas has his first soccer game (and daddy is the coach)!!!

Wednesday, September 16, 2015

No Update

We haven't heard from the doctor in a week so we're still waiting on the results of Bridget's microarray analysis. I'm trying to stay calm. I'm telling myself that most of the big, scary things have already been ruled out. Which helps a bit. But I know there are other scary things that are still possible. And there is the chance that they'll find something but not know what it means, which would just cause more worry and wonder.  Doing this amnio was opening Pandora's box in a way. It can be comforting to have information, but at what point is the information toxic?

I'll be 23 weeks tomorrow. I feel Bridget move on a regular basis. The contractor is at our house right now working on our house renovations that will include creating Bridget's room. I talk to her daily. She's not just an abstract thing anymore. She's this real person growing inside me. At this point I'm pretty sure I'll continue the pregnancy regardless of the microarray results. I hope I didn't jinx myself by saying that out loud. But it's true. I feel like I'm in this now. Plus, we're more or less to the point of viability. So there's that. I hate that my head still contemplates this what if decision. I wish I could just turn it off. I suppose that won't happen until the doctor calls. Or until next Thursday when I'm 24 weeks and there is no decision to be made.

I'm now nervous about her kidney. I can handle her having one kidney when she's born (well, she can handle having one kidney since I'm told that's all she'll need to thrive). It's this waiting every 2 weeks for another ultrasound to check on her progress that is so hard. There was a sense of relief last Wednesday when the MFM told us what he saw (and didn't see for that matter). It lasted a few days. I'm a week away from my next appointment and I'm wondering what's going on in there. Is the fluid in the kidney/cyst/urinoma accumulating more? Is her right kidney still functioning properly? Is my amniotic fluid level staying at a normal level or is it dropping? And yet all I can do is try to stay calm and wait. I know my worrying and stressing out isn't good for me or Bridget, but I can't turn it off. The fear is sitting with me every minute of every day. The doctor told me to enjoy my pregnancy, but really, how am I supposed to do that?

A friend posted on Facebook earlier this week that Worry is believing God won't get it right.  I so wish I had faith that would allow me to believe those words. But my relationship with God has always been complicated. But you can bet your ass we're talking on a regular basis and I'm praying and pleading and begging for her to be healthy. I believe in the power of prayer and the collective consciousness that can move mountains, so thank you for your continued prayers.

And speaking of prayer, please say a prayer for my sorority sister Liz who is awaiting results from a brain biopsy. She is such a sweet soul, a young mother, professional woman and loving wife. Pray that she gets good results this week and that she finds some peace in the waiting.