A Trial Run

Last night, we received a reminder that we are not in control.  Around 6:30 p.m., my stomach started feeling really hard and uncomfortable.  I wasn't really sure if it was contractions because it was just an uncomfortable tightness that slowly came and went; I couldn't really count or time what was going on.  Per the instructions from my doctor's office's website, I drank water and laid down on my left side to see if the feeling would go away.  It didn't.  After about an hour, we made plans to drop off Lil' Bit with her godmother and headed out to the hospital to get me checked out.  The sensations became more distinct to the point where I was able to identify two separate "contractions" in the 20 minute drive to the hospital.

When we got there, all the triage rooms were full, so they put me in a labor and delivery room.  This turned out to be a real perk because those rooms are way more comfortable than triage--more private, too!  They put me on the monitors and checked me for dilation.  I was roughly 1-2 cm dilated, which surprised me, but is apparently totally normal at this point for a second child.  Jellybean looked great on the monitor, an ultrasound determined he had plenty of fluid, and they didn't find any evidence of an infection or dehydration that might be causing the contractions.  However, the monitor made clear that I was having contractions, and the longer we were there, the more regular they became.  They didn't hurt, although they were uncomfortable, and they never got above 40.  By the time they discharged me, they were very regular, coming three minutes apart and roughly all the same strength.  I didn't know you could have regular contractions only three minutes apart and not be in labor.  Turns out you can.  They aren't considered Braxton Hicks because they were too regular and don't go away with rest, but because they didn't seem to be causing labor to progress, they were deemed "preterm contractions." 

We were at the hospital until about 11:30 or so.  They checked my dilation again before discharging me to see if the contractions had caused any further dilation in the 2-3 hours I had been there.  Because I wasn't any further dilated, they were sending me home.  I was surprised that they weren't going to do anything to stop the contractions, but given Jellybean's gestational age (34 1/2 weeks) and the fact that any meds they gave me to stop the contractions could cause issues for him, they explained that their preference was not to stop any contractions.  Generally, when the body goes into labor at this point, babies generally do just fine and most don't need ventilators or any special care and there's usually a reason for the labor, so they prefer to trust the body that it's time.

It was certainly odd to be discharged while still contracting.  My orders were to come back if they got worse and they gave me a method to attempt to gauge that.  At the same time, they didn't want me to wait too long if I thought they were getting worse because they hoped to be able to transfer me to Detroit if I was, in fact, progressing, but they couldn't do it if I was in labor.  So, we were left with this grey, fuzzy area to decide when and if we thought we needed to come back.  Fun!  On the plus side, I was already scheduled to see my doctor today, so the on-call doctor from last night left word to have them check my cervix again today and make there hasn't been any further dilation.

We picked up Lil' Bit and got her home, but getting her back to bed was extremely difficult--particularly given that it was 12:30 a.m. at that point and all three of us were very tired from being up way past bedtime.  By this morning, the contractions seemed to have stopped--yay!  Outside of two doctor visits (and writing this post), my goals for the day are sleeping and drinking water.  Ah, what a glamorous life!

What surprised me most about this whole incident was how calm I was.  On the way to the hospital and as they were hooking me up, I was more worried that they were going to put me on the monitor and tell me I was crazy because nothing was going on than I was that it would turn out I was actually in labor.  Once it was clear I was contracting, I was so relieved I'm not sure I ever processed what it would mean if I was really in labor.  Fortunately, I didn't need to.  And, we got the opportunity to test out our contingency plan for Lil' Bit and local delivery in the event we don't make it to the induction, which makes me feel a little calmer about that, too.

Still, it was a very real reminder that Jellybean is going to come when he wants, and all I can do is try to be prepared for whenever that is.  Even so, I spend a few minutes every hour or two singing the "Just Keep Swimming" tune from Finding Nemo to Jellybean, except the words I use are "Just keep cooking."

T-minus 4 and 1/2 weeks and counting...

A Transfer of Power

Today we met with the high-risk OB in Detroit--Dr. P.  The ultimate determination of the meeting was that we need to transfer my care to her practice.  I will still go to my local OB's office to do my twice-a-week non-stress tests (NSTs or antenatal testing as the doc called it), but all of my weekly visits, ultrasounds, blood sugar regulation, etc., will now be done by the Detroit practice.  Personally, this seems pretty reasonable to me.  If I were a doctor about to take on a high-risk patient with delivery of a newborn who needs surgery, I would want to be the one primarily responsible for her care.  However, she will not necessarily--in fact is unlikely to be--my delivering doc.  So, because I will have weekly visits, they will do their best to introduce me to as many of the people in the practice as possible so that hopefully I will know whomever ends up being on call when I deliver.

We reached agreement that we should schedule me for an induction for just after 39 weeks so that if I haven't delivered before then, that's when we'll get this party started.  Dr. P indicated that there are almost no "wet lung" issues after 39 weeks, so that Jellybean should be sufficiently grown for the cardiologists' purposes, but that because of my gestational diabetes and the increased risk of still birth after 39 weeks for gestational diabetics on insulin, we don't want to go much beyond that.

I'm a little scared, as we are now only 6 weeks away from my scheduled induction.  In fact, as I calculate things, by the time I start seeing the doctor in Detroit in two weeks, I will be only 4 weeks away.  Thus, I will probably only being making 4 additional trips to Detroit in addition to the one we were already anticipating.  I guess that isn't too terribly horrible.  At the same time, it doesn't give us much time to meet the other docs.  It also means I now have to freak out about all the things I need to accomplish in the next 6 weeks.

We also reached an agreement that if I went into labor while still at home, I should go to the local hospital and let them determine whether to medically transport me to Detroit or just deliver Jellybean locally.  If I deliver there, the local hospital will transport Jellybean to Children's Hospital and I will do my best to get the heck out of there asap to follow.  Although being stuck in a different city than Jellybean will be difficult, it is far better--for him especially--than ending up delivering him by the side of the road without any of the interventions we know he needs.  To that end, we have started talking with friends about contingent plans so that we can have someone with Lil' Bit, someone with me at the hospital, and someone with the hubster following baby to Detroit in the event this occurs.  Hopefully we won't need to use this contingency and we can just head over to Detroit for the planned induction.  But, we all know babies come when they want to, so we just have to wait and see if Jellybean is willing to go along with our plans.

I'm pleased to have a plan.  I'm pleased to have some answers.  I'm frumpy that I have to go to Detroit weekly, but pleased I can still do my NSTs locally rather than driving 2 hours to Detroit for a 30 min test and then driving 2 hours home.  I am sad I won't be seeing my regular OB.  I was supposed to have two more visits with her, but both of them have been switched to other docs in the practice, so now I won't see her before the official transfer to the new practice.

I am both excited and terrified about the end of this pregnancy.  It has been less than a glowing good time, but Jellybean is much easier to take care of and doesn't need surgery as long as he's inside.  Labor will bring me my beautiful baby boy, but it will also bring a whole new host of challenges--and not just the usual newborn ones.  It's starting to sink in and it's pretty scary stuff.  Don't get me wrong.  I know when the time comes, I will be up to the challenge.  I will put my head down, thrust my metaphorical horns forward, and charge full-throttle into whatever is to be--that's just who I am.  It doesn't make it any less scary, though, which makes me extremely thankful for the support of my friends, family, and community.

T-minus 6 weeks and counting...

Dear Doodlebug - 2 years, 10 months

Dear Doodlebug,

We're about 2 months away from your third birthday and I wanted to take some time out from the whirlwind of dealing with your brother's pending arrival to celebrate how wonderful and amazing you are.  I want you to know how much you make your parents smile and how much you heal our hearts.

Where once we were worried that you weren't talking enough, now you are quite the conversationalist.  You can make long, fairly complicated sentences which positively amaze us, like, "When I go to H-y's and play in the sand and take my shoes off, my feet get sandy."  When you parrot us, it's fun to see ourselves reflected in you--like when you got up from the game and held up your index finger, and told daddy "I'll be back in 1 minute" while you went to eat a bite of cereal; or when you go upstairs and say, "I'll be right back"; when you put your Pooh bear to bed, tuck him in and tell him, "Good night.  I love you.  I see you in the morning."; or when the kitty runs away and you look at me and say, "That happens sometimes."  We love how when daddy calls us his "ladies," you giggle and say, "I not a lady.  I a big girl."

You are so polite with your automatic "Thank yous" and your "pleases" are coming along nicely.  You've even begun asking to be excused from the table--you obviously didn't get that from us.  You are working well at picking toys up after you play with them and I am working on letting that happen more on your schedule rather than making you clean up each item when something new catches your fancy.  You are doing a much better job at taking turns while playing games, although sometimes TAD (toddler attention deficit) kicks in and you forget it's your turn.

You can do puzzles well beyond your age-rated abilities, practically make your own coffee from the Keurig (if you could but reach it and if you actually drank coffee), and pick out and play your own DVDs.  Your ability to memorize books and songs is so impressive.  It's fun to hear you tell us stories or "read" us books-- how every page starts, "One day," and then you attempt to describe what you see in the pictures.

You seem to be adjusting to the idea of a brother/usurper fairly well.  You always take his "C pillow" (a Boppy) back to his room if we use it for nap time.  You point to my tummy and tell me I have a "baby brother" in there and then, sticking out your belly as far as you can, you proudly announce that you have a baby in your tummy--although you have declared that yours is a girl.  You announce happily that you will help him learn his letters and numbers as he gets "big and big."

You still love to jump--whether on your bouncy (trampoline) or across the floor from blanket to blanket (thereby avoiding the floor/lava), or down off the couch in full flight.  We have harnessed some of that into gymnastics class which you seem to adore.  I love how you show me what you learned and then say, "I do dat in dymnastics."  It's very clear you are proud of what you can do and you have every right to be.  I love the joy you have when you run back and forth across the room, shouting, "watch me, Mommy."  I love the twinkle in your eye when you grab my arm or leg and say, "I got you.  You can't get away."

You can be amazingly clear about what you want at times and other times you will regress and simply point at your mouth, or point at a desired item and refuse to use your "big girl words."  Still, your big girl moments far outweigh those times.   You are working on being so independent whether getting your clothes and shoes on and off by yourself; working to figure out the whole potty thing; or getting your own yogurt from the fridge, spoon from the drawer, and getting the lid off without any help.

I am amazed every day at the differences in you that have come in less than a year.  When you watch the DVD of your birthday from last year, I can't believe how much you have grown and matured in just 10 months.  In some ways, these differences feel bigger than those between your birth and 10 months.  But, the best part--or at least my favorite part--is when you give spontaneous hugs or say "I love you too, Mommy.  You're my best friend."  Those times help me feel healed and I think I can make it through just about anything.

So, thank you for being my doodlebug.  Thank you for being so amazing.  I can't wait to watch you continue to grow into the person you are becoming.  I am so proud of you.

Love,
Mommy

Remembering Gratitude

Today at church, a friend gave a powerful testimony about a lesson she had learned this week.  Her lesson was best summed up in her last sentence--you can't be pitiful and grateful at the same time.  It was a timely reminder to me that, in the midst of preparing for the whirlwind to come, I have much to be grateful for.  So, I wanted to take a moment and give thanks.

I am thankful for:

1) Being a parent.  As hard as all this surgery and medical stuff is, I am blessed that my journey with infertility ended with my having children.  Not everyone is successful, and I am grateful that I was one of the lucky ones who was.

2) My marriage and my husband.  Marriage is hard enough.  Ours has survived law school, infertility, and high needs children.  I am so lucky and so grateful that he has my back and that we're in this together.

3) My family--both by birth and by marriage.  They have been so supportive in all of the difficult moments.  Just feeling loved and supported can do so much to get me through the day.

4) My job and my co-workers.  I am lucky to have a job I love and to work with people whose company I enjoy and whose opinions I value.  They have also been a great support to me, finding ways to help and reminding me it's okay to cry, even if I am at work.

5) Health insurance.  I am grateful to have good health insurance. I am also grateful that there are no longer pre-existing conditions or lifetime maximums, so I don't have to worry about my children being uninsurable before they are even 5.

6) Reliable transportation.  With all of the trips to the doctor, including lots of trips to Detroit, I am grateful that my car is in good condition and I don't worry about whether I can make it all of the places I need to be.

7) Our medical providers.  I am grateful for such an amazing group of doctors--both for me and for my children.  Having confidence in their care makes things so much easier on me.

8) My special people.  I am lucky to have friends, near and far, who do amazing things for me.  Whether sending prayers, providing pick-me-ups, giving hugs, standing beside me when times are tough, coordinating care for my family, providing food and clothing, babysitting, messaging to make sure I'm okay, or any of the other myriad ways they show their love, I am blessed by and grateful for each and every one of my friends.

I know that the next few months, maybe even years, are going to test me.  I am so grateful for all of the blessings I have that will help me not merely survive the times to come, but find the joy and love present there as well.  And, hopefully, even in the dark times yet to come, I will remember to be grateful for all I have.

Letting it Out

One day last week, a friend of mine posted a song in her Facebook feed for a number of her friends that she had been praying for.  I had never heard the song before, but I owned other songs by the artist, so I clicked on it for a listen--after all, I was fairly certain I was one of those friends for whom it was intended.  Needless to say, it made me cry.  Not a little sniffle cry, but a runny nose, big tears falling without any help from me cry.  And as I sat there listening (and crying), I realized that I needed to cry.  I have been working so hard to cope and deal with what is going on by researching and looking at things logically that I have been shoving the emotional stuff down.  Way down.  I know I do it, in part, because I feel like I need to hold it together if I'm going to get through the day.  I'm afraid that, if I let it out, then I won't be functional anymore, and I need to be functional to take care of Lil' Bit; to work; to get the house ready; to remember all my meds and doctors appointments; to survive.

But, in that moment of grace, when the sadness leaked out, I remembered that I cannot truly cope unless I allow myself to feel--sad, angry, overwhelmed.  If I don't let those feelings out, they are just going to fester inside of me until I can't keep them down anymore--and then my functionality will really decrease.  When another friend did something nice for me later in the week, the tears came again--fast and unexpected.  It would appear that I can take heavy and sad, but anything nice sneaks past all my defenses and renders me vulnerable.  As a result, I have set a new project for myself.  At least once a week, I need to listen to music or do something similar that can eek past my defenses and let me really feel my frustration and grief.  Still, even knowing it needs to happen--even knowing that I usually feel better after I have done the work of letting it go--it's extremely hard.  I pride myself on my ability to cope; to get through the day; to be strong.  Crying feels weak, out of control, counter-productive.  My logical mind rages against the loss of (the illusion) of control.  My rational mind argues that I shouldn't bother because I don't need anything else on my to do list.  I'm hopeful that it will feel less like a burden and more like a spiritual gift but, even if it remains difficult, it's still worth doing.  Most important things are.

We're In For a Long and Wild Ride or, What I Know So Far

We've pretty well established at this point that I like to research and plan.  These are the things that calm me when I'm freaked out.  Plus, I'd rather learn this stuff while I have the time and energy to process it, rather than when I am recovering physically and emotionally from birth, let alone the wringer of open-heart surgery on my child.  So, it should come as no surprise that I've spent a lot of time this last week researching Jellybean's condition.  Obviously, any of the information I've found is subject to change based on Jellybean's specific situation, official diagnosis, and the protocols of CHM, but it's helpful to have some sense of the breadth of the challenge we're facing.  That said, here's what I've found so far.

The CDC reports that, each year, only 960 babies in the US are born with hypoplastic left heart syndrome (HLHS), or 1 in 4,344.  According to Boston Children's Hospital, HLHS "is one of the most challenging congenital heart defects to care for."  Everything I have found certainly supports this statement.

The first surgery--the one done at 7-10 days of life--lasts approximately 6 hours.  After it's completed, they wait several days before closing the chest to prevent the compression of the heart by the rib cage until the heart has had a chance to adjust to the new circulation.  After surgery, kids remain in the hospital about a month.  The good news is that the success rate of this surgery is high, with 90% or more of the kids making it home.  However, of those that make it home, another 10-15% are lost before the second surgery.

The care at home between the two surgeries looks pretty intense.  In addition to the weekly check-ups with the cardiologist, and likely lots of meds, Jellybean will probably be on oxygen and an apnea monitor.  Weight must be checked daily to make sure he's eating enough, and a pulse-ox monitor has to be used twice a day to check his oxygen saturation.  He may be on a feeding tube, depending on whether he's strong enough to feed himself; the low oxygenination caused by the mixed blood flowing through the body can make children suffering from HLHS too tired to feed well, so they often need supplements to make sure they get more calories per swallow.  Sometimes, because they had an intubation tube in so early, they associate having something in their mouth with that sensation, resulting in difficulty taking a bottle or breastfeeding.

Although I've found descriptions of the second and third surgeries, I haven't found much on recovery or mortality stats or care afterwards.  But, quite honestly, that's about a year away, and based on what I've already learned, I will have so much on my plate between now and then, I'm not sure I need to know more just yet.  The goal, for now, is to be ready, rested, and as prepared as possible for whenever Jellybean arrives, because once that happens, the roller coaster is gonna take a sudden, turn down a high, steep curve that will take my breath away, and I don't want to fall out.