My Boys

21.5 months. Yesterday, David turned 21.5 months. That's how old Ian was when David was born. And now I look at David and say to myself, "WHAT WAS I THINKING?"

At the time, I thought of Ian as such a "big boy." But David seems so little at this age. I know some of that is birth order and much of that simply is my perception.

Photo by Paul Nicholson

Sweet Ian. I can't imagine how hard it was for him to have a little intruder come into his life. Although that intruder's arrival meant Mommy's release from bed rest, so maybe it was a fair deal.

Ian definitely is my big boy now. He loves going to school and playing with his friends on the playground. I love seeing how parallell play has morphed into playing together for Ian and his friends, whether they are racing cars down slides or pretending to run a grocery store. Ian definitely is in a testing phase, finding out exactly where Mommy and Daddy can and will draw lines. Some weeks he tests with tantrums, and some weeks he tests with passive aggressive slowness.

I think of Ian as my "big boy" so often that I catch myself thinking of him as a 5- or 6-year-old, and I have to remind myself that he is 3. He doesn't need snuggles as often these days, but he still needs physical affection with wrestling and silliness. I can see the rewards and trials he experiences as a big brother....he loves guiding David by the hand when I need extra help, but I think he struggles with the extra responsibility I expect from him.

Sometimes our lives get so hectic that I forget to notice how absolutely amazing Ian is. My son. He loves explaining things. "Mommy, did you know....?" is a phrase often heard. He loves doing things by himself and surprising us by coming downstairs fully dressed or putting away his toys. He can be very serious and focused and then switch quickly to being a basket of silly giggles.

David. He is my last little one, and I am trying to be a brave mommy and let him grow up. It's so easy to think of him as a baby. He loves to be snuggled and held and rocked, but of course he also has an insatiable need to explore. His words are developing at a shocking (to me) rate. A few weeks ago I was amazed at how quickly he added words to his vocabulary. Now I am amazed at how he strings them together.

Mommy: "David, are you a smart boy?"

(Expecting the usual "uh-huh" answer....)

David: "No.... Daddy smart boy."

What? When did these sentences appear? Some of his favorite words are football, baseball, bus, truck, Ian ("Inan"), school ("ool"), zebra, and hippo (first used today when he pointed to the hippo on his diaper and said, "My hippo right there.").

David is a slide man. On the playground he will go for the highest slide he can find. He also attempts to climb ladders and bars like his brother, and a few times lately I've caught him contemplating sliding down the playground pole.

Watching my boys play together is such a beautiful miracle. (It's also a miracle because I can get housework done.) I love watching them chase each other and play hockey and build lego houses. Life in the motherhood trenches can be tough sometimes, but when I can let go of worry and perfection and just watch, I am amazed at the gift I have been given in getting to be a mommy to these two boys.

Backyard Adventures

"Let's go all the way up to the tree, David, okay? We can be like monkeys!"

"Yeah!"

So Happy He Could Sing

I forgot to tell you! My youngest son is walking. I know, right?

But that's not all. He also had a terrific neurosurgery check-up on Monday. And by "terrific," I mean, "he was cleared to play hockey."

Seriously, though, we were excited to hear that David's neurosurgeon has very few concerns about his development and activity. We still need to keep an eye on him to watch for signs of re-tethering, and of course in a couple of years we'll have to see how potty training goes. However, the doc encouraged us to not treat David as disabled (good for this paranoid mommy to hear) and cleared him for soccer, basketball, baseball, etc. He even said non-contact hockey would be fine, although playing goalie is out (along with football and gymnastics). Basically, we need to keep David in shape to keep his core strengthened but avoid anything that puts extreme stress on his spine.

Paul and I took David to Noshville for his own special brunch to celebrate a good appointment.

This is him in the car on the way home:

We're proud of our little dude, and so thankful for how far he has come!

Up, Up, Up!

Almost a year after his spinal surgery, David has decided it's time to stand -- and even take a couple of steps. We're pretty excited for our little dude.

David Update

Here's the latest on David and his back:



Yep, little man is crawling on his knees! He's also pulling up on all the furniture and occasionally a person or two.

At his 12-month check-up, our pediatrician was still a bit worried about David because he dragged himself around the floor instead of crawling, and because he had only pulled up to standing a few times. Dr. M said that he wouldn't be worried about David if he hadn't had surgery; he would assume David was a late bloomer. However, he wanted to be extra vigilant due to the lipomeningocele.

Dr. M referred us to Tennessee Early Intervention Services, which offers in-home therapy to help infants and toddlers who have developmental delays. A case manager came to our house and tested David's abilities to see if he qualified for services.

Um, he didn't. Not even close. For one thing, to qualify for services a child has to show a 40% delay in gross AND fine motor skills, and David's fine motor skills are, well, just fine. And he had progressed so much in the two weeks between his 12-month appointment and his evaluation that his gross motor skills were pretty good as well.

So after speaking again with David's pediatrician, we decided we'll just take a wait-and-see approach before looking into any other therapy options. However, the case manager did send us some exercises we can do with David to encourage even more progress with his motor skills. I thought that was fantastically kind (and a very good use of my tax dollars!).

So at this point, David's just an ordinary toddler. And I am one grateful mom!

Milestones

I forgot to mention -
Just before David turned 8 months old, this happened:

Sitting up on his own! Hurray! He's a pro at it now.

Still no crawling, but lots of rolling and spinning around on his tummy. Our pediatrician noted some low muscle tone in David's legs at his 9-month check-up, so we're doing lots of standing practice to help those legs get stronger. Sometimes this involves lots of time in the exersaucer, and sometimes it means a dance party while being supported by Mommy or Daddy!

I'm definitely grateful for both of my healthy boys. They are learning to play and laugh together, which is one of the most amazing things to experience. We have a lot of silly in our house these days.

Post Surgery

Hello, me lovelies.

 So sorry I haven't written in a couple of weeks. As you can imagine, life has been a bit hectic.

I am overjoyed to report that David's surgery went very, very well. We were happy and relieved to see him kicking and trying to roll over just a few hours after surgery (it would have been sooner, but he woke up so quickly after the operation that they had to sedate him again -- he's a feisty one, he is).

David, the day after his surgery.

The hospital was so overcrowded that we didn't have a "real" patient room -- we had to stay in a small recovery room and share a bathroom with the patient next door. It really wasn't a bad experience, though. The nurses and medical staff were absolutely wonderful and really helped us sail through everything.

The surgery went so well that the doctors offered to let us go home after only one night instead of two. Being a bit nervous about taking home a baby with a giant incision down his back, I decided to stay the extra night. That turned out to be a good thing -- David was allergic to the pain medicine they originally gave him and vomited all of it, so we needed a few extra hours to get that sorted. The second night David managed to kick out his iv (feisty!), which involved a few seconds of blood, drama, and Mommy trying not to pass out. But all in all things went incredibly well.

Last night we made a return trip to the hospital because I found some sort of fluid on David's sleep sack after his nap, fluid that lined up with his incision. The neurosurgeon's office urged us to go to the emergency room so David could be examined. The doctors and nurses thought the incision looked fine, but neurosurgery decided to admit David for overnight observation just in case. Any leakage from spinal surgery has the potential to be spinal fluid, which is a very bad thing to have leaking.

David got a clean bill of health this morning, and we got to come home. I felt kinda silly about taking him to the ER, but the doctors assured me that I did the right thing. We still don't know if the fluid I saw was sweat, a leaky diaper, or a spinal leak that stopped, but I am thankful that David is healthy and happy. And hey, we did get to stay in a normal room last night, so I got the true children's hospital experience. It was nice!

I do have some sadness and stress post-surgery. I'm really relieved that it is over, but the recovery is much harder than I thought it would be. Honestly, I was expecting a one- or two-inch incision that would be no big deal and a baby I could tote around to playgroups and activities after just a few days. David actually has a rather large, 5-inch incision, and he has several restrictions on his activities. We can't lift him under his arms, give him a bath, send him to a church/Y nursery, or put him in his exersaucer for six weeks. We can't lift his legs when changing his diaper; instead, we have to roll him over.

I'm sad for David that he had to endure such major surgery (although I am thankful it exists!), and I'm sad for Ian and me that we can't quite resume our normal lives yet. I thought post-surgery life would be a stress-free time when I could resume an exercise routine, take the boys to play with friends, and explore our community. It's just a few, short weeks in the grand scheme of things, but the restrictions hit me pretty hard because I wasn't expecting them.

Anyway, that's where we are right now. A bit isolated, a bit crazy, very tired, and very thankful.

The Pre-Surgery Post

Picture courtesy of Nicholson Photography.

Less than 36 hours until David's surgery, and I'm definitely starting to freak out a little bit. Our little household is trying to function as normally as possible, but the strain is almost palpable at times. Until the last few days, I've dealt with the upcoming surgery largely by ignoring it. Honestly, that's worked well for me. I can't change anything by worrying about the surgery, so when it crops up in my thoughts I say a prayer and try to focus on being mentally present with David and Ian. Yesterday and today, though, I've been facing the reality of what's coming, sharing my hopes and fears (okay, mostly my fears) with those around me. As much as I don't want to think about these fears, stating them out loud -- fears of death, paralysis, etc. -- lessens their hold on me.

To help me wrap my mind around the surgery a little bit more, I reached out to some friends who also have had young children go through surgery or illness. These friends offered some wonderful thoughts on their own experiences, and I would like to share them with you.

• Lori prepared for her baby's surgery by talking with other parents with similar experiences. She also took before and after pictures that she gave to the doctor as a gift and a testament to the success of the surgery.
• Tara says to be prepared emotionally for the surgery to be delayed if the schedule is running slow that day, and take some toys to distract the little one while waiting for the surgery. A nurse practitioner friend also mentioned that surgeries are sometimes delayed a couple of hours.
• Being informed helps Mark when his son goes through procedures. He recommends talking to the doctors to find out exactly what they will be doing, how long it will take, and what will happen if any complications arise. He also recommends finding out what we'll see when David is in recovery as far as ivs, monitors, etc. Mark says, "Tubes and wires and whatnot aren't so bad when you know they're going to be there!" Mark also says the surgeries ALWAYS take longer than they say, so don't panic when that happens. (Tara confirms that one, too.)
• To stay calm during the surgery, my friend Mollie recommends saying a prayer and then getting lost in some escape fiction. Chris chose to snuggle his daughter's toy elephant and not fight the tears. 
• After the surgery, Lori focused on comforting her baby as much as possible with snuggling, holding, and singing. Tara found it difficult to hold her baby because she had an epidural and lots of tubes, but the nurses brought a big hospital bed so Tara could snuggle her and help her sleep. 
• Tara also recommends being straightforward with questions and concerns, since the doctors and nurses are there to help!
• Packing recommendations from everybody: phone chargers, good toilet paper, David's favorite toys, pillows, books/movies/CDs (anything to keep us occupied), snacks, toiletries, Bible, comfy jammies.

I definitely feel better having heard from so many of you about your experiences. Thank you for so honestly sharing your success stories, your fears, your regrets, and your wisdom. 

If you, dear readers, have more experiences to share, I would love to hear about them in the comments!

David Update

David went for his MRI last week. The results confirmed the initial diagnosis, lipomeningocele with a tethered cord. That's good, overall. He will need surgery, but this is a very mild defect and fairly easy to correct. The surgery will be in June, and he'll be in the hospital for a couple of days.

The MRI experience went very smoothly. Miraculously smoothly, in fact. David usually wakes up several times to eat in the early morning, so I was expecting to have a very unhappy baby when he woke up for his morning snack. And....he didn't wake up. I fed him for the last time around 3:30am, and he slept up until we put him in his car seat to go to the hospital. Then he fell back asleep until time for his MRI! He normally would have wanted to eat around 5:30 and 7:30, so I absolutely view that as divine intervention -- no kidding.

Then, once David was being prepped for surgery, he woke up and started smiling at all the nurses. Occasionally he would look in my direction and pout, but in general he was his normal, smiley, cuddly self.

The Vanderbilt team was very kind, and they ensured that everything went smoothly. I am grateful to be in a city with such a wonderful hospital.

Mostly I am grateful to God for the blessings we continue to encounter on every part of this journey.

M-day

David's MRI is next Monday.

I've been disproportionately stressed out this week, and I think it's because the spectre of the MRI is hanging in the back of my mind.

I'm having a hard time wrapping my head around this. I've never had an MRI and certainly never seen a baby have an MRI, so I don't really know what to expect.

I'm pretty nervous about the sedation aspect. How do they sedate babies? And then there is the whole fasting thing.... [shudder]. Not feeding a baby for six hours isn't a big deal in the grand scheme of things, but I'm pretty sure it will feel excruciating in the midst of it.

A part of me is thankful that we are getting the MRI done so soon. I long for more information about David's condition and prognosis, and this is the best way to get the details.

I guess I am also thankful that God has found a way to remind me of my powerlessness. I am looking at all these unknowns as a challenge to remember that I am not in charge of the universe. To be honest I think I'm a little angry with God on that point -- I did five months of bed rest, darn it, don't I get to be in charge of everything now? At least in charge of my family? No? Well.... fine.

I'm still trusting in His plan, though.

On an interesting side note, the other day I was watching Mr. Rogers with Ian, and a young wheelchair basketball player made an appearance to teach Mr. Rogers some arm stretches. Mr. Rogers asked the boy why he had to use a wheelchair, and the boy said that he was born with a tumor on his spine that damaged some of his nerves. Um, wow. That was timely.

Hi, gang.

Just an update to say I'm surviving. Boy, life with two kids is hard. I love my boys, though. I can't imagine life any other way.

I feel like I've recovered from my C-section, but I'm having trouble recovering from the months of bed rest. I just don't have any stamina. I want to be active and chasing Ian around the house, but I really just feel like sitting on the couch all day. I'm hoping that regular exercise will help. Right now I'm taking a hula hoop class, which is fun but brutal.

I'm still carrying 20 pounds of baby weight. That's a bit hard to accept. With Ian, I didn't gain a lot of weight even though he was 9.5 lbs, so I was down to my pre-pregnancy weight within a few weeks. This time around I have a harder journey ahead of me. I'm nursing, and I feel like I'm hungry all the time, but the weight isn't melting off. For now I have a closet full of clothes that don't fit.

In fun news, David rolled over from tummy to back tonight!

March for Babies

I've joined Itty Bitty Becca's Team for the March of Dimes March for Babies this year! 



I didn't know much about the March of Dimes until my friend Nancy had her sweet baby Becca at only 28 weeks gestation. Since then, Nancy has been a tireless advocate of the work that March of Dimes does to ensure healthy babies and healthy mommies in all pregnancies. Their research into prenatal care, prematurity, and birth defects is saving babies, like Itty Bitty Becca, every day.

In the past year March of Dimes has become even more important to me. I went into pre-term labor at 17 weeks and ended up on bed rest for five months while waiting to bring my youngest son into the world. Happily, he was born at 39 weeks, healthy and vibrant. However, we discovered he has a tethered spinal cord, a birth defect related to spina bifida. The work of March of Dimes helps babies like my David make it to full term and supports families who are dealing with NICU stays or birth defects.


In addition to my own experiences, I am thankful for what the March of Dimes has contributed to the health of Itty Bitty Becca and others like her. My tiny friends Lydia and Penny are lovely twin girls who also were born at 28 weeks, and I am thankful for the research that is helping them flourish and grow. 


So this year, I am joining the March of Babies and walking on April 17 to support March of Dimes. If you want to support my walk, you can visit my March for Babies page (or click on the bar on the right side of my blog) and contribute to March of Dimes. Your gift will help March of Dimes strive toward their goal of healthy babies and healthy families! Thanks!

2-9 David Update

We saw the neurosurgeon at the children's hospital on Monday. Originally our pediatrician thought they might do the de-tethering surgery when David is 2 or 3 years old, but the neurosurgeon recommends we do the surgery when David is 3-6 months old.
I'm scared for my baby to have surgery, but I agree with the reasoning behind it. Sometimes physicians wait to do the surgery until there are signs of neurological impairment (trouble walking or incontinence), but our neurosurgeon prefers to do the surgery before problems appear because occasionally the damage cannot be reversed.
The next step is an MRI to confirm the diagnosis. David will need to fast for 6 hours and then be sedated before the procedure. That's very frustrating, because our pediatrician scheduled an MRI when David was a few days old, but the neurosurgeon canceled it because he wanted to talk to us first. However, he didn't tell us anything on Monday that couldn't be said over the phone. He didn't even examine David.
Sigh. I'll definitely be turning to some of you NICU moms for your pro surgery support. I have no idea how I'll cope with a hungry baby for several hours. My brother has suggested that they sedate me as well.
If I've been listening to the doctors correctly, David's specific condition is called lipomyelomeningocele. It's actually fairly rare, less common than what's traditionally known as spina bifida (myelomeningocele).  The prognosis seems to be very good, but of course we'll know more after the MRI.
Thanks to everyone for your thoughts and prayers! They are appreciated!

Update on David

Ah...my resolve not to google David's condition lasted less than a week.

We actually had a pediatrician appointment yesterday, and I was able to hear a little bit more about what's going on with David's back. I found much of what our doctor said very comforting. The condition is called "tethered cord syndrome," and with a successful surgery we can expect David to run, jump, and skate just as well as his big brother. The timing depends on the opinion of the neurosurgeon, but we may be looking at surgery in the next couple of years, not the next couple of months. I'm sure that will still be hard when the time comes, but for now I am glad that the timetable is longer than I thought. The doctor really seemed positive about everything considering we were worried about a more devastating diagnosis (for instance, a spot that left neural tissue exposed).

I didn't feel very good after googling "tethered cord syndrome," though. I knew I should have held off on that one. I read all the complications that can happen when the problem isn't treated early, which left me wondering if it really would be okay to wait a couple of years on the surgery (glad we'll be seeing a neurologist to help with that one and that I don't have to depend on the wisdom of the interwebs). I also read that this problem is considered a neural tube defect related to spina bifida, which of course left me searching my brain to see if I remembered to take my prenatal vitamins during those first few weeks of pregnancy (i.e. -- is this my fault?).

I really won't have any more answers until our appointment at the children's hospital in February. Until then, I am trying to choose faith over fear and count the many blessings we do have in this situation. Thanks for your prayers.

P.S. -- We did find out at the pediatrician appointment that David is gaining weight really well; I am so grateful for that!

Another Trial, But I'll Take It

My new baby boy is absolutely perfect.

Except he's not.

When David arrived on the scene, he surprised us all by having an odd "birthmark" at the base of his spine. It looks like a skin tag or mole over a lump in his skin. In the operating room, the doctors and nurses took some extra time to check the mark out to make sure it wasn't open to the spine or anything immediately dangerous.

Our pediatrician was concerned about the area, in part because he couldn't classify it. It could have been a harmless birthmark or something more serious. And so David was scheduled to have an ultrasound on his back at Vanderbilt Children's Hospital as soon as we were discharged from the hospital. We didn't even get to go home first.

The ultrasound gave us a few answers. The area isn't a simple birthmark, as we had hoped, but it isn't anything immediately threatening. It's a small tag of fatty tissue on top of a bundle of extra nerves that are connected to the spine. So while we're thankful it's nothing terribly serious, it's also not something that can be ignored.

At first our pediatrician scheduled us to have an MRI two days later to give us more information, and he warned us that surgery might be necessary in the next couple of weeks. Apparently there is concern that the nerves could pull on David's spinal cord and cause problems.

However, when the pediatric neurologist saw David's scans, he decided that he would like to do a consultation with us first before any scans or talk of surgery. We are scheduled to meet with the neurologist in early February, so apparently things look good enough for us to wait a few weeks.

I am very thankful to have a month at home with my family, without worrying about surgery or other plans. I am deliberately not googling what we do know about David's back, because I'd rather have answers from professionals than get worried about speculations on the internet.

If I think about it, I am terrified at the prospect of David having surgery. So for today, I'm not thinking about it. Today, I'm focusing on my gratitude that David is healthy in every other way. He truly is so amazing. He is my little boy.