Shower

My original showers were planned for June & July, respectively.
Since wee Robbie graced us with his presence long before then, things got rescheduled.

Sadly, because Robbie can't really travel these days, the shower planned for David's hometown just couldn't be rearranged.

But the local one was this past Sunday!

There was a bit of a snafu at the beginning- it seems the restaurant it was being held at closed the location we were expecting. So when the hostesses arrived to decorate the sign said "CLOSED."

The restaurant had, instead, booked the party at an alternate location. So everyone set about getting the guests (most of whom were already en route) to the correct place.

But once we got there, everything was great!

We're very blessed to have such amazing friends and family. I'd never had a shower before- having chosen not to have one when we got married- so it was all new to me.

I'm usually the shower thrower- not the shower throwee. It was so strange not to be the one running around planning, decorating, hosting & cleaning up. I didn't even have to load the gifts into my car! While I was gabbing everyone did it for me!

It was great to have some social interaction. It was the most I'd had since Robbie was born. It was so wonderful to see everyone.

Here are some pictures of the event.

Enjoy!

--Trish

And a bonus picture of Robbie:

5 pounds

Robbie had his first pediatrician appointment on Wednesday.

It went quite well.
He finally broke 5lb! Five pounds, one ounce to be exact.

It was great to see because he'd gained 7 ounces in 6 days since we left the hospital the 2nd time. That's on plain breastmilk, which we didn't really expect to see.

He got the last vaccination he was due for- this one was oral, so the worst part of the visit for him was being stripped. The boy does not like to be naked.

It went so well that the doctor doesn't want to see us back for a month. The only things on his list of follow up items were his weight, his feedings and his reflux. She said that most preemies come out of the NICU with a whole laundry list of "issues." She's impressed with how well he's done.

She does want him to stay on the home heart monitor for a while. She didn't get specific. He's had 3 episodes in the 2 weeks we've been home. All three were brief. Of course, they scared the crap out of me anyway, but they were to be expected. The doctor wants to keep the monitor until he hasn't had any "for a while." I'm happy to have it as an added protection. I don't get much sleep, but when I do, I don't have to leap out of bed to make sure he's still breathing. There's a machine for that.

Our home health nurse is going to try to get a few more visits so we can keep a close eye on his weight gain. That's fine by me. It's nice to have extra eyes to make sure he looks the way he should.

For now, we just try to get him to grow as much as possible.

He got plotted on the growth chart yesterday. Or, rather, plotted on the page with a growth chart- he's not actually on it. They hope he'll catch up by the time he's 2. She did warn us that 25% of preemies don't catch up by 2 and with Robbie starting and staying as small as he has, he's at great risk for being one of them. But we'll keep feeding him all he wants and pray for the best.

If only I could donate him some fat.

--Trish

Robbie vs the Paci

A quick video taken tonight because he just amuses me so much.

Please forgive my singing.

15w

Robbie is now 15 weeks old. Of course, since we've passed his due date (September 4) he's now entered the era of "Adjusted Age." Since he really should only be a week old, you can't really hold him to a standard of a normal 3 month old. So most of his development is measured by his adjusted age- now 9 days.

There are lists floating about that say "You might be a preemie mom if.." and one of them is "You might be a preemie mom if someone asks how old your baby is and you say "well..........""

I had this experience for the first time this past week when we were back in the hospital. When we took our field trip down to radiology for his Upper GI, people in the elevator asked. And I had to say "well....."

Eventually he'll catch up. The experts say that for every month he's early, it can take a year to catch up. So he may not catch up with his peers until he's 3 years old.

He automatically qualifies for some programs like Early Intervention to help that process. We have our first meeting with them on Monday. This will just be for paperwork.

We had an evaluation before we left the hospital and the good news there was that he's right on track for his adjusted age. It's not at all uncommon for preemies to be behind. When other babies are learning to hold their heads up, a preemie baby is learning to breathe and swallow at the same time.

Robbie is right where he should be for a newborn and actually ahead in a couple of areas- mainly regarding head control and his eating. Everyone seems to credit that to all the Kangaroo care we did when Robbie was first born.

Kangaroo Care is when a baby is naked except for a diaper and placed on his mom's bare chest. The studies about it are truly amazing.

During Robbies first months I got to hold him a few hours a day. That seems to have helped him and I know it helped me. I always told the doctors it was "Therapy Time" for both of us. I think it was the only thing that kept me sane during the scariest times.

In any case, we plan to partake in any and all programs we qualify for. Because he was so early and so small, he pretty much automatically qualifies for everything. I suppose being small does have its benefits.

The eating issues have definitely improved. We had to call the doctor again this week because he was back to not wanting to finish his meals and was screaming in pain again. I suspected it had to do with the fortifiers being added to his breast milk and asked if we could try going back to plain breast milk and/or up his Pepcid dose. The doctor agreed to try the plain milk first.

The very next feeding went extremely well and have ever since. Today, in fact, he's eaten every 2 hours almost all day- taking full feeds. If he hasn't gained weight at his doctor's appointment on Wednesday I'm going to call them liars.

But for now, we just feed him as much as he'll willingly eat.

And of course, what everyone really wants!

PICTURES!!

Robbie's jail cell crib from the peds unit:


A nurse helps me get dressed!


I love my paci!


Nom-nom-nom! Yummy Thumb!


See my heart monitor strap and my G button? I hate 'em both.


Daddy loves me!


I surrender!


I still love my paci!


Pierre try to eat me again!

Home again

We're back home again.

The pediatrician ordered an upper GI on Monday and it showed that his fundoplication is intact and in the right place- but he's refluxing really badly anyway.

It's frustrating for many reasons, of course. After having had surgery we hoped not to fight this any more. And reflux is not a pleasant thing to deal with. He's in pain and doesn't want to eat. And of course, not eating means no weight gain, which is bad for a baby who is already so far behind. And leads to dehydration which is obviously bad.

Fortunately he's responded to the Pepcid and eating much better. They watched him all day yesterday and into the morning. He's back up to full feeds and doing okay so far.

He continues on the Pepcid (orally now- which is both expensive and hard to come by in liquid form.) and follows up with the pediatrician next week, the pediatric GI specialist the week after, and somewhere in there, the surgeon as well.

That's a lot of doctors for a 4 1/2 pound baby. But we do what we can.

--Trish

35 Miles back

Well... The place that people called our 2nd home that was really more like our 1st home until it became our former home is now our home again.

Yes, we're back in the hospital.

The short version that short of the nearly debilitating lack of sleep I was suffering from, things were going swimmingly at home until yesterday. Robbie has decided he will only sleep while being held, but we were managed.

Then his G Tube started leaking AGAIN.
The home health nurse came yesterday and said it looked okay, he'd gained 4 ounces since being home and was generally thriving.

But then the G tube KEPT leaking. We were struggling to keep him warm enough as it was (finally resorted to a space heater in his room) so the fact that he was constantly wet was frustrating to say the least.

Then about 7:30 last night he didn't finish a bottle. Okay, 1 bottle a day that isn't complete is no big deal. But then he didn't finish the next. Or the next.

Finally today I called the pediatrician. He hasn't taken more than 30 cc (when he should be getting about 45) since last night. I expected the on call pedi to tell us to come in tomorrow- instead he sent us to the ER. He wanted to see if the G button needed a balloon adjustment. He'd call ahead and tell them we were coming.

We got to the ER and they were waiting on us. At in- I walked in and said that the pediatrician said he'd call ahead and before I could ask if we could wait somewhere away from all the sick people, the girl next to her said they were expecting us, they had a room and people waiting and to follow her.

We walked down the hall and there were literally about 5 people in a room waiting on us.

They got him stripped, attached to 100 monitors, asked 100 questions and called the surgeon. They decided to inflate his balloon a little more, have me feed him and see if it leaked.

Well, I fed him.. but before I could finish, he promptly vomited EVERYWHERE. Now, he shouldn't be able to puke at all- that was the point of the surgery, and this was a LOT of it. Down his blanket, soaked my pants, left a puddle in the floor.

That got us admitted. They decided that while he doesn't seem sick, dehydration is too easy and quick to happen in a baby Robbie's size.

On the way to the room, we passed one of the RTs from the NICU who gave us the "WHY ARE YOU HERE?" look. David explained.

About the time we got into our room, that RT and our favorite RT (the one that attended Robbie's birth) were in to visit. You could tell the doctor was confused about why we had to RTs in the room when she came to see us. I had to explain that Robbie is very popular. Such a burden.

In any case, the plan is basically IV pepcid, IV fluids, and slow increasing doses of pedialyte to see how it goes. He'll be getting his 2nd dose of pedialyte in the next half hour.

He'll also be getting more bloodwork because somehow the lab has lost our CBC. I won't even get into how frustrating that is, but what's done is done, so we go with it.

So far the worst thing is that they're tracking his temperatures closely- RECTALLY. Suffice it to say that Robbie is NOT a happy baby. Which makes me not a happy momma. I cried when they gave him his IV. I know I should be used to it by now, but he was crying that "I'm so very, very sad" cry and it just shreds my heart.

The good part is that as of right now, we're mostly here for observation- not really because he's sick-sick. He doesn't seem quite himself, so I'm worried and will be glad when we get the CBC back.

We'd appreciate any prayers and good thoughts.
--Trish

Home

He's home!!

He's home!!

He's HOOOOOOMEEEEEEE!

We spent the night in the hospital "rooming in." Essentially we had a room down the hall from the NICU. They brought his crib down to our room and we took care of him. The nurse brought us bottles at feeding time because there are no fridges in the rooms, but the rest was us.

I won't claim to have gotten much sleep, but it was great to be with him all night.

This morning we got up and fed him, then set about getting everything ready. We had discharge instructions and papers to sign. We had lots of stuff to pack up (96 days in the hospital accumulates a lot of stuff) and details to finish.

We told everyone goodbye. I cried.

We had one last lunch in the hospital cafeteria.

Then it was time to go.

They wheeled me out in a wheelchair just like a new mom.

We loaded the car and were on our way.

We got home around 3pm and tried to settle in.

Robbie didn't miss a beat. At one point I sat on the twin bed in his room to feed him and he woke up enough to look around. You could see him taking it all in- "Hey.... this is new..." but he didn't seem upset or unsettled. And then he smiled. Probably just coincidental gas, but at least he didn't seem to mind the change.

he's slept very well today. He didn't eat much at one feeding, but all the rest have been great. He seems to know that he can now be held as much as he wants. He'll only lay in his crib or swing for a few minutes before he fusses. The minute he's back in our arms, he's happy again.

This is the way it was meant to be.

Going home!

Sorry no update for so long, but things have been crazy.


Robbie finally managed to wake up last Sunday night and was pulled off the vent that evening.
He was slowly weaned from the extra oxygen and back where he started by Tuesday.


They moved us back down to the step down unit Tuesday evening.

On Wednesday, Dr. C came by and asked if he was going home on oxygen. Both one of our primary nurses and I said we didn't think he'd need to, so he said "Better turn him down, then." and turned down his air flow again.


On Friday, they turned his oxygen OFF. That's right, the big boy has been breathing room air just like you and me for 5 days now.



They also told us he'd likely be going home in 5-7 days! I was so excited and nervous. We didn't have his room ready at all!



Fortunately, his crib came in on Friday morning (after having been told is was backordered until November) so we were able to get things going.

Over the weekend, we were told that the magic day was Thursday!

On Tuesday, I came in and they said he could actually go home Wednesday.

But we weren't quite ready. There were a few things to be done first, one of which was to take CPR, which was Wednesday night (tonight!)





So tomorrow is the big day.

It's been a very busy week. He had to pass a hearing test, a car seat test, prove he was okay with oxygen. We had to learn to work his home heart monitor & infant CPR, plus learn some car seat safety as well. Fortunately ALL of those things went well.



Robbie is still struggling to gain weight even though he eats a ton. They've now started adding some high calorie formula to his breastmilk but he doesn't like it quite as well so now feeding time is a little challenging. Fortunately he has a great pediatrician who will work on it with us so I feel safe going home. At least, as safe as can be.



It's weird not to have a monitor to look at. His home monitor is just a small piece of equipment with blinking lights.. not nearly as informative as what I'm used to. It also fastens to him under a belt which is really annoying because it goes right under his armpits, which is how I take his temperature. So just to take his temperature, I have to undress him almost completely, then turn the monitor off and undo the belt. Then put it all back on. he doesn't like it and neither do I.

But it's definitely worth it to know that he's okay.



Tonight, we're "rooming in." basically we're al the hospital in a room with Robbie. We do all his feeding and cares. It's sort of a dry run to make sure we can handle it and don't have any questions. It's not required for discharge, but we wanted to do it just to make sure.



Tomorrow- we head home!



Some pictures from Robbie's last days in the NICU:


Robbie passing his car seat test:





Dr. Chao comes to say good-bye:



Robbie's BFF Gavin:


Our night primary- Mindy


Day Primary- Dara: