baby steps

Benjamin had another quiet day, which is more than we were expecting this morning. His blood pressure has been nice and steady- so much so that they totally weaned him from the dopamine, and his vent settings are a teeny bit better than they have been. When I came in this morning his eyes were wide open and he was doing fine. We’re hoping he continues on this positive trend and are just taking it all day by day.

A good day

Amy and I left Benjamin still doing well. A quiet day for a tough little guy (not counting the part where they operated on his heart).

Thanks for all the support and kind words today! It helped keep us strong too.

And back again

Benjamin is back in his isolette and looking pretty good, all things considered. Blood pressure is good and he’s still sleeping off the anesthesia. His stomach is a little bloated but soft and no one seems concerned. Hoping the rest of the day goes smoothly too.

Mostly done waiting

We just talked to the surgeon, and he said that while the PDA was larger than they had thought, the surgery was straightforward and Benjamin did well. Because the PDA was so big, he thinks that it will help Benjamin a lot to have it closed now. Right now he’s still with the anesthesiologists so we haven’t seen him yet. He’ll still be pretty sedated when he comes out, and then we’ll see how he takes his new blood flow.

And now we wait

Benjamin was just taken into the OR. Trying to be brave.

Squirmy Worm

Benjamin had a good weekend. Carol and Conrad came to visit and see his new digs and get some good i-talian food. Both missions were accomplished, and we were so glad to have them here.

Mr. Benjamin seems back to his old, squirmy self. He kicked and wiggled and looked around all weekend, pausing only to dislodge his ventilator tube this morning. He’s going to be on his antifungal medicine for 6 weeks to make sure that the infection is totally gone, but other than that, all clinical signs of infection seem to have gone away.

All this, just in time of course, for his surgery. Benjamin’s PDA ligation is scheduled for tomorrow morning- he’s 3rd on the list. Though we know that he needs the ligation, and that it will help him in many ways- it will increase blood flow to his organs, make his heart work a little less, and help his lungs develop; we also know that he doesn’t like change. The doctors said it will be a rough 24-48 hours after the surgery as his body adjusts to the different circulation path and to expect low blood pressure, high vent settings and kidney issues at first.We’re nervous that the next week will be a tough one, but we’re also hopeful that it will help him more than a short-term setback.

And for your viewing pleasure, some cuteness:

 

Holding mama's finger

 

trying to find his thumb

 

Whaa??

 

Wish us luck tomorrow and for a quick recovery for our little guy!

A man with a plan

bird's eye view

 

Benjamin got the clear from Infectious Diseases this afternoon, so I got a call from cardiology. His PDA ligation is scheduled for Monday, barring any changes over the weekend.

Alert little man

Benjamin looked a lot better this evening. One of his blood cultures came out positive but we think he’s on the mend. He was the most alert he’s been in days.

Roller coasters

Ok- I get it now. Why they say it’s like a roller coaster – because when the downs come, they come fast.

When we last wrote, Benjamin was acting a little off (sleepy and less responsive) and they had found a fungal infection and started treating it. Also his blood pressure started dropping again so they needed to restart the dopamine. By the next day they started giving him a slew of antibiotics and a stronger anti-fungal medicine. They also ran a bunch of tests because his blood count had been low and his platelets had been low. They also redid a head ultrasound and found a grade 1 bleed in his brain. It is pretty mild and if it doesn’t grow it should not cause any problems, but it is pretty scary for us. They are going to check him out again in a month to see if it has changed.

By last night they had his blood pressure under control but his ventilator needs increased a lot. For a while they had him up to 100 breaths per minute (a few days ago we were bragging that they had him down to 18). Luckily he seemed to respond to that and they brought him down to 40 – pretty much where he started from when he got to NY.

The doctors seem to have everything under control, but it’s really scary for us. Hopefully everything was inter-related and he will bounce back quickly and  will be better when the infection is kicked.

Like they say – the only way out is through… keep our little guy in your thoughts.

Road bumps

We haven’t posted in a while and we know people sometimes get a little nervous for us when it’s quiet. But don’t worry, things have been ok for little Mr Benjamin. He hasn’t quite made the progress we hoped in the past few days – he is still on the ventilator and no decision has been made on the PDA surgery yet. He also went backwards a tiny bit in his vent settings but not too far.

The doctors were also concerned about low platelets and his blood pressure going a little lower again the past few days so they ran a bunch of tests on him. It looks like he has a fungal infection but he is being treated for it and we were told not to worry too much about it. The infection could be to blame for his blood pressure and platelets so we are glad they figured it out and got him the right medicine. He will get tested again in a week to see if it went away.

In other news it looks like the little man is getting his dad’s curly hair. Amy thinks it’s just messy.

Benjamin also has had so many visitors this week: Joseph, Brianna, Annalise, Kristina, Annalisa, Grandpa W, Damon, Sarah, Elisha, Grandma W, Grandma L, Anthony, and Denise. He’s a lucky boy.

 

Photo Post

Bullet Points

What you may have missed in the last two days:

Benjamin

• is still cute
• is fuzzy
• sleeps on his belly (see photo below) (only OK in the NICU, don’t do at home)
• began eating milk again
• lost some weight (down to 2lbs, but hopefully will gain again soon due to prior bullet)
• went down on his vent settings… 18 breaths per minute!
• might get off the vent and on a CPAP soon
• might not get the PDA fixed for awhile (still determining)

Amy

• is taking a photography class (and might be crazy)
• is going to start work again on Monday (eek!)
• eats cake once a day due to the free cake in the parent lounge.
• hopefully won’t gain a million pounds from free cake.

Joe

• is also cute and fuzzy

Carol

• shipped 29 lbs of milk, due to arrive in NY tomorrow.
• is awesome.

Exhibit A: On belly, with Joe's finger

Exhibit B: For any interested medical staff friends

 

Grateful for so much

The last five weeks have been rough ones (happy week five little man!), I will not lie. And though I have said it before it is worth repeating – as much as we’ve cried from the scariness, exhaustion, and helplessness of this whole thing, we’ve shed more tears from people showing us amazing amounts of kindness and generosity. Erica recently commented on a post that even if we imagine this experience as a forced marathon we have all of these wonderful people on the side cheering and supporting us. And it’s true. I have no idea what Amy and I would do without our friends and family and their support.

I always tell friends thinking of getting married that life has terrible stuff waiting for all us – the hardest worst stuff you can think of. You don’t get married because life is easy – anyone can handle easy. You get married because you need someone by your side who can help you through all that life has waiting for you. And Amy and I have been through a lot together, as many of you know, but one thing this experience has shown me is that you need even more than just each other sometimes. And we have been so fortunate to have these amazing people around us.

So thank you all so much. Thank you for the visits, the food, the dog walks, the rides, the laughs, hugs, shoulders, stories, ears, notes, calls, gifts, and generosity (and occasional uterus of course). You make us want to be better friends and people.

Popping my head in….

for the quickest of updates.

Today Benjamin was fully weaned from all those pesky blood pressure medicines. He had a few fabulous visitors and enjoyed a new book (thank you Cristina and Seth).

On a separate but related note, Joe and I were yet again reminded what wonderful friends we had through the generosity and general awesomeness of Alia and Owen and Elisha, Jamie and Bernice. Thanks for the food guys!

 

Baby steps

Benjamin made some progress today. They took him off of epinephrine and weaned him more off the dopamine. Best of all they took the arterial line out of his head so he looks a bit less scary. Benjamin’s blood pressure was pretty stable all day but he spent the day giving me grey hairs by dropping his heart rate. (though that’s a common thing for preemies). No progress on the ventilator but we’ll take what we can get.

Grandma Edie, grandpa Jay and aunt Roseann visited today too. Benjamin wiggled hello.

32 Days

Today was another quiet day…

They’re continuing to wean him off the blood pressure medicines. Hopefully by the end of the weekend he’ll be off
medications and back to his natural baselines. He’s being very active
and responsive (read: grumpy, but in the good kind of way that makes
doctors call him “fighter”).

Benjamin gets his first lesson on exposition in a novel.

Place holder

I’m writing a real post about the planes and ambulances that Benjamin got to ride on, but in the mean time a quick update:

Benjamin had a good, calm day today. His blood pressure, sats and heartrate stayed nice and steady all day. He’s still not 100%- the lack of peeing means that now he’s peeing all the time to make up for it (though that is correcting itself) and he’s not eating (back on TPN for awhile) while everything gets settled down again. But he lost the “retaining water” bloat, perked up a ton, and has been rutching around like a wild man. I read him the first chapter from  A Cricket in Times Square (he loved it), changed one diaper 3 times in a row (told you he was peeing a lot) and had a couple of good one-sided conversations. It will be nice when he starts talking 😉

They didn’t get as far in weaning him from the blood pressure medicines as they would have liked because he’s being really sensitive to any changes, but he’s on lower settings than yesterday with a strong BP, so that’s something. After such a good, postive change overnight I’m feeling confident that he just needs more time to settle down and not be messed with too much. All of his big re-tests are done (echo, sonograms, blood tests), so hopefully a couple of quiet days will get him to his happy place.

A rough start for our little man

When we left Benjamin last night his blood pressure was reading a little low, but no one was very worried, thinking once they got some fluids in him he’d bounce back up. So we went back home, got some love from Cayman, and went to sleep in our own bed – until about 5 when the phone rang. Benjamin’s blood pressure had crashed overnight and his kidneys had also stopped working as a result. “He is significantly sicker” they told us. They put him on dopamine and epinephrine and were struggling to get the pressure stabilized. When we called back later that morning he still had not urinated but they had gotten his pressure to go in the right direction (if not to a good place yet).

Amy showed her stuff as a mom and spent her birthday watching  the doctors messing with him, taking blood, giving blood, with one eye on the blood pressure at all times. They had put an arterial line in his head to track the pressure better, which looks ugly but works. Over the day the pressure gradually went up. All this time his respiration was great and they even were able to wean him more off the ventilator settings (incredibly).

Then finally – he peed. Amy said the nurse did a dance. Everyone was very relieved.

Right now as I write this next to his isolette his blood pressure is normal, his last diaper was soaked, but he is still looking extra puffy from all the fluid, but that is going away. Also he had another head ultrasound and it looked clear – a wonderful thing.

I’ve said this before: Everyone told us that being a NICU parent is like a roller-coaster. But two things wrong with that description: we like roller-coasters and they are also very short. Amy and I have decided that the NICU is like running a super hilly marathon you didn’t sign up for and didn’t train for – also you are being chased by dogs.

These past two days just reminded us that even though we have grown accustomed to our baby in the box, Benjamin is still in critical condition. But we are so happy he seems to be bouncing back from the drama today – a pretty good birthday present for mom.

Safe and sound

It’s been a long long day but Benjamin is settling into his new “home”. The move was rough at first though. He does not like being messed with and the change to the baby pod they used for the ambulance and plane and to the portable ventilator was tough for him. When they finally got him settled Amy and he started on their journey. Carol was able to see us off and say bye to Benjamin. We are so happy she will continue to be part of Benjamin’s life.

I’m sure Amy will post more about the trip but for me it was a long stressful car ride waiting to hear how they were. Luckily it all went pretty smoothly.

Benjamin seems to be doing ok so far at Morgan Stanley Children’s hospital (we’ll just call it CHONY). He still is very sleepy from being sedated for the trip and it being such a long day. (We are also very sleepy.) They are very aggressive here about getting babies off the ventilator here and are already weaning him off a little. He was re-intubated (by the guy who invented the bubble cpap ventilation method we hope he moves to soon) but through the nose which amazingly ended his leak (that and a bigger tube).

Everyone here seems nice – not “Lancaster nice” but nice for New York. We already miss everyone very much from WBH though.

It will be great to sleep in our own bed tonight and begin to figure out how our life works now. One step at a time.

More tomorrow

As Barbarino would say "Up your nose with a ventilator tube"

On a jet-plane

We just landed in NY and Benjamin is being set up now. Here’s a shot from in the jet.

Benjamin travels in style