Well I realize it has been a while since I have posted. We have been knee-deep in the search for a nanny. It turns out this is a tougher process than originally thought as many individuals do not call back or show up for appointments. Hopefully we have that resolved in the next few weeks as I have to get ready to go back to work!
Matthew visited his cardiologist, who said his two VSDs were closed, and his ASD was very small and they expect it to close. He doesn't have to go back until the summer of 2017!
He has been following up with his genetics, who has given the OK for him to do a 5 hour stretch at nighttime, which he appreciates. His carnitine levels are also finally back in the normal range! He was diagnosed with some silent reflux by the pediatrician, so he is now on a generic version of Zantac for that. However the pediatrician has been very happy with his progress.
We had our first outing together as a family. We went to the Ridgefield playground. It was a small outing, but it was nice to feel like a family. We even came across another couple who had a preemie son born around the same gestation as Matthew. He is now over 6 feet tall with kids of his own.
Speaking of tall, Matthew is certainly getting some height. He is over 24" long now, which is a big jump from his 14.5" start height. He is also over 11lbs, up from 2lb 9oz at the start. He is approaching the growth curves for his actual age, not adjusted, which is exciting!
He has made great strides with his tummy time and doing a good job picking his head up. He rolled over one time the moment we put him on the floor, but I'm not sure that counts. He also has his favorite animals - Dog, hippo, and his black/white book with color forest animals. He has started laughing and smiling, which is great to hear and see. He also loves to talk to his animals.
I didn't get a great photo of him for his 5 month birthday, but I would like to give credit for the #5 - it comes from the card sent by my friends Jul and Ian.
The past few weeks have gone by pretty quickly. We have seen the Yale GRAD clinic, who said Matthew was doing well, as well as his geneticist. We asked the geneticist to let him go longer at night sleeping (we were waking him every 3 hours). We wanted to give him a 5 hour stretch, but we negotiated on 4 for right now until he gains more weight. He seems very tired during the day and really wants his sleep. The geneticist also switched up his calories on his formula as he was on a really high regimen and I felt like he was always really gassy/digesting.
Then Birth to 3 came for the first time last week, and they noted that his head was really floppy and he was just laying there on his tummy not doing anything. He had been picking up his head a little so this was a little concerning to us. It was also frustrating because he went from doing "great" the week before to "not great" the next week.
We also had the visiting nurse come, to whom I mentioned about Matthew being tired and the head lifting thing. So she decided to say maybe it was something "neurological" as if with the same breath that someone might say, "maybe its allergies." I asked her if she was concerned, and she said not really. Then she apparently sent a really concerning email to the geneticist because they called the next day asking if we needed to do another metabolic panel. So much for not being concerned. I said no to the panel. Then I explained for the next hour on the phone that I didn't think Matthew was lethargic, I just thought he really wanted more sleep which we are not giving him. I also explained how one of the preemie moms I know (Alyssa!) said it is likely because his head is big. Turns out the pediatrician agreed with that theory this week.
On a brighter note he visited the eye doctor for the last time this week! His ROP is officially gone. The vessels on his right side are fully grown and on the left they have about 1mm to go. So she doesn't need to see him anymore! He may have to go to a pediatric ophthalmologist though around 6 mo of actual age to make sure his cross eyes don't get worse.
I was thinking how our biggest worry right now seems to be focusing around tummy time (of course, there are still tangential concerns to that with his 3mcc and overall preemie-ness). I remembered reading Alyssa's blog for Virginia, which I read and re-read in the hospital and at home many times. I remembered one entry where she talked about how her worries and focuses have shifted from where they were in November and December. Virginia, as we astonishingly found out early on in our conversations, had the exact same due date (Feb 4) as Matthew. So their timelines coincide! I remember reading that entry in November and December and wanting to be out of that ugly part of our journey. Out of the part that was worried about oxygen saturations and pressure settings. It is nice that right now we aren't focused on that, and that instead we get to focus on more developmental goals. While we (I more than Sean) still worry, it is not nearly as bad as when we were petrified Matthew was going back on the vent, or worse never coming off it.
Another one of my NICU friends has twin 32 weekers that recently had to go to the PICU for an extremely terrifying experience with RSV. Unfortunately their worries did go back to oxygen saturations, pressure settings, and worrying about their daughters having to go back on the vent. The preemie road is extremely scary - even after the NICU.
Matthew is weighing in at almost 10lbs now. He is 22 1/2" long and his head circumference is 15 1/2" His height/weight are not yet on the growth chart for his actual age (not surprising) but his head I believe is. He has a big head.
I tried to get some good pics of him on his 4 month birthday, but he was kind of a grump that day. I did take a pic with him in his blue/white striped hat. This was the same hat he had on in the NICU and it almost covered his face. Now it is too small for him! That picture is also me implementing the recommendation of Birth to 3 - do tummy time naked so he doesn't just lay there. You can see for yourselves how well that worked. Matthew does what he wants to do. It was true in the NICU and it is true now....
He has started to give more smiles lately, but I haven't been able to capture them on the camera yet. Hopefully I will be able to soon.....
I will be trying to make Matthew's birthday numbers out of the baby cards people sent us. The 4 came from the card sent from Mike and Michelle Parks!
One last note - thank you to everyone for your thoughts and prayers regarding Indiana. The house seems extremely empty without her and we really miss her. Christopher still asks about her, and I hope that she and Alexander have found each other and that they are happy together.
I rescued Indiana shortly after 9/11.I was living in West Harlem at the time, in a
ground floor studio with no bars on the window.My neighborhood wasn’t great, and I had my heart set on getting a German
Shepherd (not because of the neighborhood, but just because I wanted one).I went to the CACC shelter in East Harlem and
found one – but unfortunately he was “on hold” to see if his owner would come
get him.I looked around at some other
shelters in the city, and then came back to the CACC a few weeks later.The same dog was still “on hold” so I decided
to look at the other dogs that were there.They were all barking away except one dog – a small black lab that was in the middle crate in the bottom row.She
sat in the back quietly but something about her drew me in.I
asked to take her out back.I threw the
ball to her a few times and she came to life on the warm pavement.When I knelt down she came right over to me, sat
in my lap and looked up at me.The woman
who worked at the shelter took one look and said, “Well I guess that’s
it.”
I picked her up the following week, after she had been
spayed.We walked from East Harlem back
to my apartment in West Harlem, and at every block that we stopped at she got a
cookie.By the time she got back to my
apartment we were best buds.By that
point I had already done the two things that Indiana loved most – playing ball
and eating cookies.No, that’s not true.She loved being with her family the
most.But these were a close second.
In the first few days I had Indiana I commented how she was
a “perfect dog” because she didn’t chew apart anything while I was at
work.One of the guys I worked with at
PwC at the time said, “Just wait.”It
seems dogs, much like babies in the NICU, have a honeymoon period.Indiana’s ended, and from that point on she
ate everything.Within a week I decided
I needed to get a crate for her safety (and my sanity).The crate would come on a Friday night….
That Friday after work I came back to my apartment to a giant
mess – the usual.I was cleaning it up
when I noticed some of the torn up paper pieces said Yankees on them.“Strange,” I thought, “Did I leave old Yankees
tickets around somewhere?”It turns out
that these were my Game 1 World Series tickets (Yankees/Diamondbacks).The Fed-Ex guy had slipped the envelope under
my door even though he wasn’t supposed to (likely because he didn’t want to
return to my neighborhood).After much
panic I was finally able to talk with Ticketmaster the next morning.It turns out the $8.50/ticket (at the time)
service charge buys you the right to call them up and say, “My dog ate my
tickets” and get 4 new ones at the Will Call window.
To this day that ranks as the top thing that Indiana has
eaten, but not without contenders.She
had one of the strongest jaws and could chew through a “tough dog” bone with no
problem.Occasionally she would decide,
for whatever reason, that she didn’t want to eat something.Like one Christmas when she got a giant
rawhide candy cane and decided she would rather carry it around with her
(banging into every nook and cranny along the way); that was until the point
she decided to devour it.She ate
through the drywall in that first studio apartment in an effort to get to the
bag of food behind the closet door.She
ate through the mattress.One day Sean
and I left frozen sausages out on the counter to defrost.When we came back we almost thought we didn’t
leave them out at all.Indiana had eaten
every bite, including the foil they were wrapped in.
Indiana traveled more than most dogs, and not just because
she lived to almost 15 years old.When I
worked at PwC I often took her with me to client sites and Sean and I always
brought her on vacation.I remember the
first time I took her on a plane (I was petrified the whole flight, had used 8
bungee cords to keep people from opening her crate and kept asking the flight
attendant to check if she was on the plane).I was working at Microsoft for a bit of time and living in a corporate
apartment. She loved Seattle.We would
play ball outside every night even when it got dark (she had a light up ball
and because she was black all you would see was this glowing thing bobbing up
and down in the air.One time some
neighbors came out to see what it was).We would go hiking every weekend.For the first time she got a taste of the country life – and she loved
it.I think she was depressed for
several weeks after we came back home to Harlem.Those streets were always very noisy and she
was very scared of being outside there.
I also remember driving down to Florida with her.We were supposed to fly down, but the
temperature took a nosedive and I realized it was going to be too cold to go on
the plane with her.The only option was
to drive down.I was supposed to be at a
client site in Tampa on a Monday, and Sunday night I had tickets to Simon and
Garfunkel (I was not missing that).So I
packed up the car, went to the concert, came back and got Indiana, and we left
for Florida at 12:30am (the exact same time of day Matthew arrived some years
later).We drove straight through
stopping only for gas/coffee and made it to Tampa around 5pm.
There were our numerous trips to the Cape together once Sean
entered the picture.We found the
pet-welcoming Simmons Homestead Inn in Hyannis (where we would later be
married) and although the breakfast wasn’t great, Indiana loved it and we loved
bringing her.Then Cagney (aka Mr. Cags)
came along.We got him as a playmate for
Indiana though the extent of their playing included her dragging him along the
street by his leash.Before we had kids
Sean and I took them both in the truck and drove from CT to LA, then up to SF,
then back to CT.They did snuggle
together that trip.
Indiana is responsible for at least 5 other people getting
dogs, including one of my best friends Heather (Mr. Boo!) and Sean’s entire
family (who at first were disgusted that Sean was dating a “dog person” – my
how far they have come!)Although
Indiana was “my” dog first, she is really our dog. She became a central part of our lives for
such a long time.Our vacations centered
on where we could take her.Our wedding
even featured her as the “flower girl.”She
was always more than
a dog, she was my best friend.
She was also responsible for teaching me what unconditional
love meant.No matter the day, my mood,
whatever, Indiana has always been happy to see me. She would always be in whatever room of the
house Sean and I were in, even if it wasn’t the most comfortable for her.If Sean and I were in different rooms, she
would find the spot of the house where she could keep an eye on both of
us.When she could walk she would wait
by the door and her tail would wag so hard when we came home that her whole body
shook.In her last months, when she
couldn’t move at all, she still had moments of happiness when her family was
around her.A simple pet or belly-rub
was of comfort to her.
She let me see the remarkable fathering side of Sean before
he was even a father.She let me see how
caring he could be, as he became her legs in her final months when hers no
longer worked.
When we were still living childless in the city, I remember
Sean and I talking about Indiana and my commenting that I didn’t think she
would live long enough to meet our kids (even the first one).There have been several Christmases that we
thought were the last.But Indiana is a
tough dog, and she hung in for a long time.Long enough for Christopher to know her as a part of his life.Long enough for us to have to figure out how
to explain to him that she is gone.Long
enough to meet Matthew.Long enough to
be ready to be Alexander’s dog when she meets him in heaven.
Like Alexander, you are selfless and you are brave and you
are strong.Even in your last days you
gave me the strength to open his memory box for the first time – to hold his
precious memories in my hand.To let you
smell them so you recognize him when you meet him.
I have let him know that you will be coming.That you love to swim, and play fetch, and chew
bones, and play tug of war, and go for hikes, and sniff the grass.It has been a while since you have been able
to do these things.
Goodbye, old friend.I owe you more than you will ever know.
Yesterday and today we got two pieces of good news.
1. Our geneticist let us know that Matthew tested negative for CPT1A - the second metabolic disorder. He is now back to just one rare metabolic disorder!
2. Matthew's Stage 2 ROP has regressed. The eye doctor said that his ridge flattened and his vessels should be growing soon!
Well, it was officially the coldest day of the winter. Given the winter so far that's not saying much but the -9 degrees this morning begs to differ. The pipes in the back room of the house froze, so that was unfortunate. Matthew has spent most of his time in the upstairs of the house - nice and toasty.
Here's a video of him yesterday playing the piano with his feet. He seems pretty proud of himself.
Another pic from today of him enjoying the pacifier (he doesn't use it often but he seemed to like it today). Note that the onesie is a (larger) preemie size. He seems to be almost outgrowing all of the different preemie clothes.
Today is Matthew's 3 month birthday. It's hard to think of him as a 3 month old, as his adjusted age is 4 days. That is definitely more how we think of him, as he is far from what a 3 month old would be able to do.
Matthew has been doing well with his tummy time. Sometimes he picks his head up a little, and sometimes he kind of just lays there. I try to do some stretches with his legs every day as the pediatrician said his legs were a little tight. He has been doing great with his bottles though, and is up to around 65ml per bottle. He doesn't have any doctors appointments this week (amazingly!) but if we get the change of insurance straightened out we can have the visiting nurse come and do a weigh in.
Here are some pics of Matthew to celebrate his 3 month birthday. Feel free to post a comment and vote for which pic you like the best - I couldn't decide so I posted them all.
This first pic captures one of Matthew's newest faces - the Elvis face.
Today Matthew went to the eye doctor for a follow up - his first of many Yale follow ups. Unfortunately his ROP has progressed to Stage 2, which we knew was a possibility. He will be seen again in two weeks, and Dr. Stossel said it is just a wait and see. She said he is not a candidate for laser surgery and so hopefully sometime soon the ROP will begin to regress. For some babies it takes a month after their due date and some babies she sees for 8-9 months. We have to see which way Matthew is going to go. She did say that he is looking around a lot, and while he is not at the point of tracking objects he does seem to be very interested in looking at what is around him.
Here's a picture from yesterday - another one of Matthew's faces. This is an introspective Matthew....
Side note: For any of my math dept folks that are reading this, Christopher's school has been teaching him shapes. There's your basics, but they have added on the trapezoid and the "romulus." He seemed adamant that it was romulus and not rhombus, so I fear this may have actually been what was taught to him (and also makes it seem like there is another shape in addition to the rhombus which we have, of course, already discussed with him at home! Perhaps this is the new Common Core PreSchool Geometry standard...)
