Finding our groove

Seeing how I’m at home all day with Ben, it has fallen upon me to keep up with the blog posts. As you may have noticed, I’m not very good at remembering to blog, and am a huge slacker. Thus,  I’m forced to resort to trickery, and distract you with an adorable picture so you forget about how there has not been a blog post in over 11 days. Prepare yourself.

Benjamin on his side with his hands in his mouth

hope the cute makes up for the late

Now what were we talking about? Oh yeah, how super cute Benjamin is. Isn’t he adorable?

The first week without Joe was very busy, and I’m pretty sure something untoward happened to the time-space continuum because there were way more than 7 days last week. I’m pretty sure last week was a month long- a physicist might want to look into this. Just saying.

We visited with Infectious Diseases (all seems stable with the PO meds; we go back in a month) and stopped by the NICU floor yet again to visit with Dany, Leora, Sara and a few other nurses and staff who were around. We had our final EI evaluation on Wednesday, which went as well as can be expected- we’re qualified for services, so now they have to figure out what frequency we get. I’m trying to enjoy the calm before the storm now, because in a few weeks we’ll have therapists visiting several days a week. I have a feeling that means I should get dressed before Benjamin’s and my morning nap.

The rest of the week was quiet, just Benjamin, Cayman and I figuring out our groove during the day, and Joe finding his quality family time during the evening.

Here are some Benjamin-bullet points, hitting the FAQs:

  • He sleeps pretty well, all things considered. He has to get medicine around 10:30/11pm, so we put him to sleep around 8 in the living room until then, and then give him a bottle and his meds, and then move him to the bedroom when we (and by we I mean Joe) go to sleep, shortly thereafter. He’ll fuss maybe one more time during the night, but will generally stay asleep until about 5:30/6am. We’re planning on shifting him to his crib in his room next week. Gulp.
  • His eating stresses us out. A lot. He’s gaining weight though (11lb 10oz!), so we’re trying to chill out about it, because we’re also stressed that we’re going to give him horrible food aversions and he’ll never eat again. We’re kind of weird. He’s probably fine. It would just make me happier if he met his target more. And then I would stop freaking out. Probably.
  • He’s trying to roll over, but can’t get his head to cooperate with his body. It’s pretty cute. He’s doing a lot of tummy time, as per the physical therapist’s suggestion when she did her evaluation (pretty much, during the day, if we’re not holding him, he should be on his belly). He’s not lifting his head yet, which is worrisome, but I think he’s working at it more, so I’m not really worried. He just hit 4 months corrected, so it’s the late end for that milestone, but it’s not crazy.
  • Everyone in our building who didn’t know we had a kid in the hospital is confused. It’s kind of funny. I usually just answer with “it’s a long story” because I’m not the type of person to have super personal conversations in the elevator with my neighbors. It’s usually also my answer to “I didn’t realize you were pregnant” and “How old is he?”
  • Benjamin smiles like crazy when he’s sitting in the swing and you kiss his cheeks. Joe also swears he giggled at one point too. I believe him, though Ben has not yet giggled for me.
  • All things considered, except when he’s (not)eating, he’s really mellow. He can amuse himself on the tummy time mat or in the swing. He likes being carried, but will occasionally fuss to be put down (how different is that from the NICU!?!). He loves the stroller and the moby-wrap. He tolerates my photo shoots.
All in all, we’re getting used to each other, day in and day out. I think we’re figuring out what works for us the best we can. But is it really only Tuesday? Because I’m pretty sure Monday lasted a few days there…

And then there’s good news…

As we mentioned it was a busy week! The eye surgeon wasn’t the only professional we saw. We also saw:

  • A gastroenterologist
  • Imaging folks at CHONY for an Upper GI Series
  • The surgeon who repaired his hernia
  • His services coordinator for early intervention
  • A physical therapy evaluator for early intervention

The gastro visit went well (as covered in earlier post) but he wanted to get a better picture on what is going on so we scheduled Ben for an upper GI series later in the week. Now, I have never had an Upper GI myself so I wasn’t really sure what was in store. We brought Ben into a room with a huge X-ray machine. They put him on a table in the middle of it and dressed Amy and I up in heavy lead aprons with lead neck shields. He was kicking and squirming a ton so they had to wrap his legs up to keep him still for the x-rays. Ben was a trooper and didn’t cry much at all. After a few x-rays they asked us to feed Ben a barium solution with a bottle. This is the child who knows the difference between formula brands (and has strong opinions) and who won’t drink formula with oatmeal in it, but thinks rice is pretty good. I really did not think he would go for the barium at all, but he took enough of it for the doctors to get pretty pictures of his insides. We haven’t gotten the final report, but the doctor who administered the test said everything was where it should be and she did not see any problems. In fact, Ben’s reflux didn’t even show up (but we know it’s there). So all in all, a good test.

The visit with the hernia surgeon also went fine. Everything looks good but he wants to see Ben in 6 months. Now that is a frequency we can handle.

And it is great to get things moving with early intervention. We want to get as early a start as possible on it as it will really help him catch up to where he should be. (As it turns out, being in the hospital for the first 7 months of your life is terrible for development.) We have the vision and general evaluator coming next week, but the physical therapy evaluator came on Thursday. She thought he was doing pretty good, all things considered. The good news from her visit is that she feels that Benjamin’s muscle tone is normal. This is good stuff – abnormal muscle tone is a prominent symptom of cerebral palsy (this does not mean his muscle tone won’t change, but it’s a good start).

And last, but not least, Ben is still gaining weight tipping the scales at 11lbs 3 oz.

Nurse Kelly snuggles with Ben

One of Benjamin's favorite NICU nurses, Kelly, got in some snuggle time with Ben this week

Lights and Shadows

Yesterday Benjamin had his follow-up with the eye surgeon and we were not surprised by the news. The blood has finally cleared up in the right eye, but unfortunately the situation there is similar to his left eye – the retinas are folded. What does this mean? Since the retinas are still stiff and are not unfolding, Ben will have extremely impaired vision – as in almost no vision. We suspect he can see very bright lights, as he reacts sometimes to the sun and lights shined directly into his eyes, but he probably can’t see much past lights and shadows. The surgeon said there isn’t anything more that can be done at this time. But he hopes that over time (as in a year or more) his retinas will become softer and then he can attempt to re-attach them. We have another appointment in 2 months and at that point we will see where we are. We will probably also consider a second opinion to fully explore our options, but Dr Lopez is _the_ guy for this sort of thing.

The funny thing is – Amy and I left the appointment not too shaken up about it. We had already come to terms with this and expected to hear the news. We are ok with it.

You may say “With technology always changing you shouldn’t give up hope.” The thing is, we aren’t going to place our hopes in some future technology – otherwise I’d be researching longer pants for when technology can make me 6 foot tall. Ben is what Ben is – and we’re going to make the most of what that means.

It will be different – yeah. But it’s not like we have ever raised a kid before anyway. As I told a doctor today when he told us to let him know if we noticed anything unusual – “We’re first-time parents – it’s all unusual to us.”

We’ll figure it all out, and Ben is going to be great.

Also, on a related note, Amy and I recently watched a trailer for an upcoming documentary on blind teenagers that really moved us. I shared it on Facebook, but I also want to share it here.

The film seems to be a labor of love – you can find out more about it here: http://www.doyoudreamincolor.org/

Miracle

We had an appointment with a gastroenterologist today to get some insight into Ben’s reflux. His pediatrician recommended a doctor who coincidentally is at CHONY, so we made a quick visit up to the NICU and got to see a few of our favorite nurses (We’ll be back on Thursday if we missed you!). We also ran into another NICU graduate, Rebecca, who looked wonderful!

Anyway, the gastroenterologist we were there to see was a bit old-school and gruff. He wasn’t surprised by the reflux and expected it to clear up around the time Ben is pulling himself up to stand (the esophagus muscles develop stronger around the same time the trunk does). He was not touchy-feely and didn’t even crack a smile during our appointment. But then towards the end he said something – “You know – that child is a miracle. When I first became a doctor, there was no way a 23-week baby would survive. But here you are holding your son. He has a hard road ahead of him, but here he is.”

I’m not sure if this was his way of putting the relatively minor issue of reflux in perspective, but it reminded us of everything it took to get here.

If you look back at these posts most of them are positive, optimistic and funny (or at least trying to be). But there were so many nights and days when we didn’t think Benjamin would make it. I mean, thinking back at the night when Carol’s water broke at 19 weeks and the doctors just gave us a 2% chance to reach viability, we really only had a miracle to hope for.

So thanks grumpy old doctor for reminding us. (For the record Amy thought he was perfectly nice).

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Now What?

Here we are. At home. With a baby.

Even with 7 months of “practice” this is weird. When does he sleep? When should he eat? Does he need a bath? Why is he crying? Does this poop look right to you? Where are the nurses to tell us what to do?? (We miss you Dany, Leora, Kelly, Catherine, and many more!). So far we only had one freak out where we called the NICU for advice (when Benjamin spit up his anti-fungal immediately after taking it {for the record they said it is safer to skip the dose in that instance}).

That said, we are getting the hang of it and so is Benjamin.

Getting a bath makes you sleepy!

He has been a little difficult to feed still – his reflux has gotten worse since we’ve been home, but we haven’t been too far off from our feeding goal each day and he has still been gaining weight.

And although he is home from the hospital, Ben still gets lots of medical love. He had his first visit from the visiting nurse the day after he got home and it went well – we’ll have at least two more visits to make sure everything is still going smoothly. Then this past Tuesday, we took Ben in to meet his pediatrician for a full check up. The doctor was impressed by everything Benjamin has overcome already and thought he was doing fantastic. He also started the process for approvals for his Synagis (RSV) shots and pointed us in the direction of a pediatric gastroenterologist to help us with the reflux and to keep an eye on his liver (the anti-fungal he is on is a bit rough on livers).

Next week we’ll be back up to CHONY for some follow-up appointments – with his eye surgeon and the surgeon who fixed his hernia.

We also started the ball rolling for his early intervention services he is eligible for due to his prematurity. We are hoping to work with Lighthouse International who are one of the many groups who provide this service through the state. Since he is likely to be seriously visually impaired we wanted a group intimate with the challenges of visual impairment. The goal of these programs is to give Ben the best chance of meeting his developmental milestones. We want to give him every opportunity to succeed as possible.

Between all the doctors, therapists, nurses and all, Ben is a very popular guy.

I’m staying home this week and next to spend as much time as I can with the little guy (and Amy… and the puppy). It is great to have the opportunity to do that, but I’ll need to go back eventually. Until then, you can find me here, debating with a baby the benefits of eating and how good a burp feels.

Also – while we haven’t been able to reply to every comment on the last few posts, we want to thank everyone again for all the support and good wishes. It means a lot to be able to share our good news (after all the bad news on the path to get here). I mean we did it – we’re out of the NICU, we’re home! Writing these posts and reading all of the comments have helped us a lot. It gave us a chance to process everything going on, but it also opened the door for so much support from all of you. And that support really helped us. I know from here on out won’t be easy either necessarily, but we’ll worry about that later. Right now we are going to enjoy reaching the end of the marathon and for the moment ignore the fact we may be in an Iron Man. Thanks again for cheering us on!

A Boy and his Dog

Before Benjamin came home a lot of people wondered how our dog, Cayman, would handle having competition for our affection.  First – we’ll share something we call “When Cayman met Benjamin”:

As you can see, Cayman was very excited to meet Ben – but Benjamin wasn’t as sure at first.

Luckily – they are becoming fast friends already. Cayman has been super protective of Benjamin and makes sure he can always see him and if he hears Ben make the smallest peep, he comes over and makes sure everything is ok. Once the coast is clear he takes position on the floor in front of him. Cayman takes his job very seriously.

Cayman guards over tummy time

In other news, our first night home went well, with everyone sleeping most of the night. The rest of our first day was pretty calm – a bit of a struggle to feed Benjamin sometimes, but other than that a good day. The four of us went for a nice walk around the neighborhood, staying clear of germy kids and handsy-grandma types.

Proud momma ventures out

Home at last, home at last…

We made it! No one stopped us at the door, no one found another test or procedure or surgery to do, nothing stood in our way.

To be honest – it’s funny how long it takes to get to an ending, but how quickly things end when you get there.

The night was a little restless – I’m not sure who kept whom up all night. But if Benjamin wasn’t fussing or making noise, waking us up, one of us would poke him to see if he was ok, waking him up. We’ll get the hang of it, I’m sure.

Our primary night nurse, Catherine, stopped by bright and early to check in on us and say good-bye and then Amy had a chance to sleep in while I packed up our stuff. Then our primary day nurse, Dany, came by to drop off some of our stuff and a pile of paperwork. All we needed to do was sign a paper and we were free to go.

“There’s nothing else? We just walk out?”

So to stall a bit we did a victory lap through the NICU with Benjamin in his car seat to say goodbye to all the nurses and a few of the parents. Benjamin wore his Superman shirt to show what a superhero he is.

Dany stayed with us until we had the car packed up and we drove away, but not before lots of hugs and goodbyes. We have a ton of appointments in the neighborhood, so we will be back to visit all our friends at CHONY.

We gave Benjamin a tour on our way home, pointing out things we passed (we did similar things when we last went on a road trip with him, but then he was a couple of cells big and frozen). We cheered when we entered his ancestral home, Queens.

Being home is good so far – we briefly panicked when Ben demanded food the moment we walked in the door, but before we had unpacked anything. The neighbors know he’s home now, at least.

We tried out his changing table a few times (and he promptly christened it <and Amy>) and we found out he adores his swing (Thanks Allison!) where he slept for hours already.

We need to go pick up Cayman from Camp Bow Wow in a little bit and can’t wait for the introduction. We’ll be sure to share photos from that.