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...)
Today was our first pedi appointment with Matthew. Even though it was over three years ago, I remember the first pedi appointment with Christopher. He got a great report, but not 24 hours later did we get the call that we needed to go to Yale immediately - that he flagged for something on the newborn screening. I remember looking back a few days later in the folder that my OB gave us, and on what seemed like a scan of a scan of a scan I found the "metabolic disorders" listed as one of the things tested. The copy was so bad you couldn't even read what it said - it seemed like that wasn't a problem for most people. When we were first told about his 3MCC, we were petrified. Amazingly, Matthew's 3MCC was the least of our worries after his birth.
Below are pics of the first doctors visits for both Christopher (left) and Matthew (right). Christopher was born at 41 weeks, at 9lbs and 21". Matthew weighed in today (2 days short of 39 weeks gestation adjusted) at 6lb 51/2 oz, 19.5" The actual examination took about 10 minutes - the rest of the 40 minutes were spent reviewing Matthew's medical history from Yale.
Well, today marked our last day in the Yale NICU. It is exactly 11 weeks since Matthew and Alexander were born. Of course it is bittersweet, knowing that we came to Yale with two babies and left with only one. But we are so fortunate to have been taken care of by such an amazing group of individuals. Never once did we second guess our decision to be admitted there, and to have our boys there. The nurses, doctors, and office staff are all amazing.
Going forward I likely will not post every day, and perhaps not always with a Good, Bad, and Ugly. We shall see! I know that people really like the blog, so I promise to keep it going - just not necessarily with the same frequency. It may depend on how much Matthew is sleeping, or how long I spend staring at him making sure he is breathing.
Here are some pics from today with the one and only Lynn. I am so, so, so grateful for everything she has done for us.
All of the nurses thanked us so much before we left for being so supportive of them. I couldn't imagine being anything but supportive of them, and it pains me to think that some people mistreat them. They are truly amazing, and we will truly miss them (but of course we will keep in touch!)
Right now everything is very surreal. Even though Matthew is home, Sean and I still felt compelled to call Yale to see how he was doing. When we picked him up today, even though he (for the first time) wasn't hooked up to any monitors, when we heard a familiar DING we still looked at his (then turned off) monitor....twice.
When my water first broke, and we went up to Yale at 15 weeks, I remember seeing the Wall of Hope. I remember looking for the babies who were born the earliest, hoping that our boys would at least reach that age. I remember thinking, why do they have so many babies close to full term on this wall? Surely their issues aren't as great as those of the preemies or micro preemies. At this point in our journey I have come to realize that these babies have just as, if not a more difficult journey than some of the preemies. I have seen babies born at 3 pounds without respiratory support, who seem to fly through the NICU. I have seen babies born at full term, 8 lbs, who are still in room 4. In fact I saw Matthew's old neighbor today, Nathan, still in his same spot. He is by far the biggest baby in all of the rooms. His parents were there visiting as they have been for months now.
The Good
Matthew had a stable day and did well with his bottles. He was part of a photo shoot this morning and hopefully we shall get copies of those pics. I think they are going to use his photo for the NICU webpage, so that should be exciting. He is already quite the celebrity. At the weigh in last night he was almost 5lbs 14 oz! He is doing well off the respiratory support!
The Bad
Matthew had his next eye exam today. He still has stage 1 ROP, which is the bad, but the good part of that is that this has not progressed.
The Ugly
No Ugly today for Matthew - fingers crossed it stays that way
Today was a busier day in the NICU. The woman that sings songs to the babies came by and we sang together and started crafting a song special for Matthew.
Another baby, who has also been there since November, had to be put back on CPAP. I heard Orly say "blood gas" and "he's really retracting" which was a flashback to what they used to say about Matthew...
The Good
Matthew had a stable night and day. He seems to be doing well off the cannula. He also seems to like his MAM bottles, and he is doing well with those. He has gotten more aggressive and hungry at the start of the feeds, so we just need to make sure we pace him!
The Bad
Matthew's MRI results came in today. Overall it was OK - there is a small dark spot in the cerebellum region that most likely represents a small bleed that was there at some point. There's no follow up, and Orly said she is not concerned.
The carnitine results for both last week and amazingly yesterday came through. Last week's numbers were down a bit, but this week's were back up. We did send out Matthew's blood to be tested for CPT1A, but that won't be back for around a month.
The rash on his butt is mostly gone, but there was a little red area today when I changed him.
The Ugly
No Ugly today for Matthew - fingers crossed it stays that way
Matthew's poop has struck again. Today Lynn was changing him, and when she lifted his butt up to take a look at his rash, he explosive pooped. This time he got the crib medal (sorry math department!) and also got all over and INSIDE the bottle warmer which was a foot away! Lynn was none too pleased!
The Good
Matthew came off his cannula today - so he is officially breathing on his own. He passed his hearing test, which is good because Lynn said sometimes preemies can fail the first time.
The Bad
We are still waiting for Matthew's carnitine results from last week to come back. It has been a week now, and still nothing....
The Ugly
No Ugly today for Matthew - fingers crossed it stays that way
Today Matthew's room 2 neighbor, Grayson, went home. He had his car seat test the other day, and today was his big adios. It was nice to see and certainly happier than some of the things we had to see in room 4. There was an open spot on both sides of Matthew when I left earlier today.
Matthew seems to love when his hat is over his eyes. You would think it would bother him, but I think he likes the darkness and privacy it gives him! I skipped holding Matthew today for fear that my 3 year old son, aka the germ factory, has infected me with his most recent cold after sneezing all over my face the other day.
The Good
Matthew has tolerated the 1l wall canula well. He has been doing great with his bottles and gaining weight.
The Bad
Matthew continues to need respiratory support.
The Ugly
No Ugly today for Matthew - fingers crossed it stays that way
Today we went for the free CPR class at Yale. I got certified in CPR last year at my school, but I will say that it was much different doing it on a tiny baby doll. Lets pray Sean and I never have to use what we learned today....
The Good
Matthew went down to 1l of air today, and off the high humidity. The next step down might be no respiratory support at all! He took his 8am and 2pm full bottles and tolerated his food well.
The Bad
Matthew continues to need respiratory support and has his moments of fast breathing.
The Ugly
No Ugly today for Matthew - fingers crossed it stays that way
We are back from Mohegan Sun. It was a nice quick getaway - we saw a good comedy show and got massages this morning. We came back in time to spend some quality time with Matthew (and Lynn!) before picking up Christopher. The room was packed yesterday, but today was pretty empty. I think 4 babies left between the time we left yesterday and came back today.
The Good
Matthew had a stable two days. They took his flow on the cannula down from 3l to 2l, which he has tolerated. They had started him on the 2l the week before but he quickly had to go up to 3l. They also raised his feeds up to 46cc, and he is doing bottle feeding essentially every feed now (as tolerated). He is a little over 5 1/2 pounds!
The Bad
Matthew continues to need respiratory support. Hopefully he can continue to wean down.
The Ugly
No Ugly today for Matthew - fingers crossed it stays that way
Today was not too crazy in the NICU, which was good. Pretty typical day....
The Good
Matthew had a pretty stable day today. He took a full bottle at 8am with Lynn, 11am with me, and 5pm again with Lynn. He was even using the regular flow nipples. At 2pm we did another breastfeeding session, but once again Matthew took it as an opportunity to do snuggle time - even after we undressed him!
The Bad
Matthew continues to be on respiratory support. We are continuing the cream for his butt, as there is still a small red mark. Last night he also registered as losing 90g, which may be a mistake but is odd.
The Ugly
No Ugly today for Matthew - fingers crossed it stays that way
It seems that things have really picked up at Yale. Rooms 3 and 4 continue to be very busy and the PICU apparently has been crazy with respiratory illnesses as well. One of the nurses from room 4, Gabby, was in room 2 today so that was nice to see.
We have officially entered the time when siblings are no longer allowed in the NICU and cold/flu season is in full effect.....
The Good
Matthew was able to spend almost the whole day at room air, which is a big accomplishment for him. We did another attempt at breastfeeding, and he latched right away. After that he decided he would rather snooze. But other people have commented on his apparent smile, which is nice! He took a full bottle for me, and 30ml of his 44ml bottle for the nurse in the late afternoon. For now we aren't going to fight too much about getting the nurses to give him the full bottle as his respiratory is our main concern.
The Bad
Matthew continues to need respiratory support. His rash is more just a little red now.
The geneticist was not as satisfied as we were with the discovery that I had been tested for cpt1 already. She would still like to do the DNA test on Matthew to see if there are other mutations present that have not been tested for, so this goes back on the list of things to worry about for now.
The Ugly
No Ugly today for Matthew - fingers crossed it stays that way
Today there was the twice monthly free lactation lunch (anyone that knows me knows I love a free lunch). I met another couple who had also been in room 4 with twins. One of their little warriors is home already, and the other is still in room 1. That little one survived the oscillating vent, and a pneumothorax before being on the path to respiratory wellness. We commented how our conversations are ones that you can't really have with anyone outside of the NICU and that the lunch ended up being like group therapy for NICU families.
We have decided to hold off on the ctp1 genetic testing. I was able to pull one of the (at the time seemingly excessive) tests that my OBGYN did for one of my pregnancies that determines what disorders you are a carrier for. It seems I am not a carrier for ctp1, so we would like to talk with the geneticist again before going ahead with that test. It requires more than the heel prick that they normally do for his Wednesday labs....
The Good
Matthew had a stable day today and did well with his bottles. His feeds have been increased to 44cc. Sometimes after he eats he gets these smiles on his face. I have not yet been able to get it on camera, but I was able to capture Matthew's "concerned face." As I have commented before, he has a very expressive face.
The Bad
Matthew continues to need respiratory support, and there is still a red/raw area on his butt.
The Ugly
No Ugly today for Matthew - fingers crossed it stays that way
Today was another hectic day at the NICU. They were looking for babies to move out of room 2, I think because they need babies to come into room 2 to make space in rooms 3 and 4. Matthew likely would not be selected for room 1, but I guess stranger things have happened. Perhaps some of Matthew's room 4 friends will come join us soon.
I had to change him after I did his diaper today because, once again, Matthew fooled me. Just as I was putting on his butt cream he again peed all over. He does this every time I put on his butt cream. The bright side was that I got to pick out a new outfit for him (but I didn't have another sleep sack for him, so he got a blanket instead). I put on one of his hats and onesies that he got for Christmas. The hat was a little big on him, but it just looked so cute I couldn't take it off.
The Good
Matthew had a stable day today. He took bottles this morning and late afternoon (he is on bottles around every other feed), and we did our first breastfeeding session today for his 2pm feeding. We did it at 1:30 as a "meet and greet" (as Lynn calls it). He still got his normal 2pm feed after that. Matthew did very well. He latched on almost immediately and did a fair amount of sucking. We were all very proud of him.
He got measured yesterday and he is almost 18", which is very exciting and a big jump.
The Bad
Matthew continues to need respiratory support. The rash is slowly getting better.
I met with Matthew (and Christopher's) geneticist today. Matthew's carnitine levels are still high, so she wants to test him for something called cpt1, which is another metabolic disorder. She says it would be "extremely rare" for him to have both this and 3mcc, to which I replied that we have been on the rare side for the past two years. The worse part is that it takes a month to get these results back, as they need to get sent out to Baylor University. I had asked if the whole exome sequencing we did with Christopher would have picked this up. It would have. Unfortunately we apparently didn't do whole exome sequencing, as we had thought. It was ordered but never done.....
The Ugly
No Ugly today for Matthew - fingers crossed it stays that way
Today was a popular day in room 2. Another little warrior joined us from room 4. Apparently there were a lot of emergencies there this morning. Then around 3pm it seemed like every baby's family was there, so it was pretty crowded.
Tomorrow we start with a new doctor on our team!
The Good
Matthew had a good day today. He took a full bottle last night for Cassie, a full bottle this morning for Lynn, and a full bottle for me at 2pm! Lynn suggested I try holding him a little away from me when he is feeding, to prevent him wanting to just snuggle with me. That seemed to work well and he finished the whole thing. Then we got some snuggle time after. Matthew was only down 10g last night (from the Lasix) so hopefully he is back up tonight.
The Bad
Matthew continues to need respiratory support. The rash on his butt is better, but still there. Some spots on his butt look pretty raw, which is the saddest.
The Ugly
No Ugly today for Matthew - fingers crossed it stays that way
Today was Matthew's first full day in room 2. He had Cassie, his primary night nurse, last night. He had Lynn, his primary day nurse, today. And he has Cassie again tonight. How nice for him!
Room 2 definitely has a different vibe to it. There always seems to be someone talking/asking when they are going to go home. I joked with Lynn that while we want Matthew to come home, we in no way are pressuring anyone - to which she replied that Matthew could be in Kindergarten and we would still be skeptical if he was OK to come home.
The Good
The big news for Matthew today was that they took him off CPAP. He was able to do half a bottle this afternoon on his new respiratory support. We also got the results of his routine 36 week echo from yesterday - they were looking for pulmonary hypertension which is a common problem in preemies. Good news that Matthew does not show any signs of that! He still has the Ventricular Septal Defect and Atrial Septal Defect, which are tiny holes in the connections between the chambers of the heart, but apparently they are not too concerned with it right now.
The Bad
Matthew continues to need respiratory support, and his fungal rash (while a little better) is still there. There are also a few very loud babies in room 2, which he doesn't seem to like!
The Ugly
No Ugly today for Matthew - fingers crossed it stays that way
Well, the number 2 has TWO different meanings today......
1. Matthew is officially two months old (yet still is a month away from when he was supposed to be born, which is crazy)
2. Matthew was moved to room 2 (step down room) today at......no not 2pm, but close....3pm
I originally had a wish that Matthew would be moved to room 2 by Christmas. Then Lynn told me how room 2 was very noisy, and I thought maybe Matthew wouldn't like it. I think she also wanted to keep Matthew in room 4 to make sure she could stay on his service as much as possible (room 2 has non ICU nurses in it, so the ICU nurses in it may get called to rooms 3-4 for more serious cases). Then the other day there was the baby that passed while I was there (see earlier post). The next day Lynn mentioned Matthew going to room 2 fairly soon, and how that might be better for me as well. That day was hard, as was today. Another baby was brought in (to the same spot as that other tiny little warrior) and immediately put on the oscillating vent (the same type both Alexander and the other tiny little warrior were on). This happened just as we were being moved out of room 4 and into room 2.....
The Good
Matthew had a stable day today. The biggest news (other than going to room 2) is that he was able to take FULL FEEDS today by the bottle - once at 2pm with me and the other at 8pm with Cassie, his night nurse. It is very impressive considering he is still on CPAP! He gained a little more weight tonight, and is right around 5 pounds! He also tolerated the third (and last) of his shots today.
Matthew also had his follow up eye appointment today. I was very nervous, but we got some good news. Matthews ROP has stabilized at stage 1 and has not progressed.
The Bad
Matthew continues to need respiratory support. His rash is still there but is slowly getting better.
The Ugly
No Ugly today for Matthew - fingers crossed it stays that way
Today Matthew received the second of his 2-month vaccinations. He tolerated it well, just a little whimper when the shot went in and then fully rebounded after. He was a tough little dude.
The Good
Matthew did 30cc of his 40cc bottle today during his feeding, and 33cc tonight. He is doing really well with the bottle considering he is on CPAP. He also gained 35g tonight, so he is almost up to 5 pounds!
The Bad
Matthew continues to need respiratory support, and the fungal rash on his butt is still there.
The Ugly
No Ugly today for Matthew - fingers crossed it stays that way
Today was the first of three days of vaccination shots for Matthew. We did it after his 2pm feed, and he was a champ for the actual shot. He let out a little cry, which was so sad, but then he snuggled right back with me. He was satting at 99-100% and looked so comfortable that I hated to put him down.
The Good
Matthew tolerated his feeds well today. We got the OK to try full bottle feeds, but today he tolerated half his bottle (20 cc) before he got tuckered out. We shall try again tomorrow, and maybe Lynn can get him to take the whole bottle!
The Bad
Matthew continues to need respiratory support, and still has the fungal rash on his butt.
The Ugly
No Ugly today for Matthew - fingers crossed it stays that way
I was able to negotiate another CPAP feed with Matthew (two per day) so that Sean could do a feed with him at nighttime. So tonight was his first feed with Matthew - 10cc. I am excited to hear how it went..... The Good
Matthew was able to be on room air (21%) for most of the day today, which is a big accomplishment for him. He tolerated his feeds well, and we did another 20cc bottle at 2pm today. He started off a little slow and had a desat, but considering he was at room air I call it an accomplishment. Lynn was off today, but his nurse Jennifer was very impressed with him. He even did a little burp when I burped him! He gained a solid 30g last night, so he is up to 4 lb 12 oz!
The Bad
Matthew continues to need respiratory support. He has some immunizations coming up in the next few days that might delay us from trying him off CPAP (not sure he's ready anyway!)
Matthew still has the fungal rash on his butt. It is so bumpy and red and sad!
The Ugly
No Ugly today for Matthew - fingers crossed it stays that way
Today was a difficult day in room 4 as another family was saying goodbye to their tiny little warrior. I watched as they came to spend their last moments behind the curtain, with the familiar hum of the oscillating vent behind them. I watched as they carried their little one to Caroline's Room for their final goodbye. Even hours later I still find I am haunted by it.
The Good
Matthew had a stable day today. His feeds were brought up to 40cc, and he tolerated his feeds today. Lynn was here and got to see him in the crib, and she got to witness him in action with the bottle. Matthew again did a great job - this time with 20cc of his food. He didn't have any desats while eating....in fact his sats were probably higher during it! We were both very proud of him and commented how funny it is that he can do this so well but can't get off CPAP!
The Bad
Matthew continues to need respiratory support. He was mostly on 22% air today with some desats - he seemed like he was maybe a little off today.
He still has the little fungal rash on his butt, so hopefully that goes away soon.
The Ugly
No Ugly today for Matthew - fingers crossed it stays that way
Today I brought in a mobile for Matthew's crib, as he's gone a couple of days in it and has tolerated it so far. He gets bundled up in a warm onesie and then his sleep sack - sometimes he likes to keep one or both of his arms out. The funniest is when he brings his hand up as if he would like to ask a question.
The mobile is Christopher's old mobile, which he would still be using today were it not for Matthew. When they outgrow the animals on the mobile there is a light show that projects onto the ceiling. Christopher absolutely loved this, and the animals in the light show became his friends. When we switched him to his new room we made sure to get a non-crib light show for him, which he has used every night and has made new animal friends that he talks to.
Today was Dr. Montgomery's last day on Matthew's service until February. Hopefully we are able to go home before she comes back, but we will also miss her. Tomorrow we get Dr. Peterek on our team, whom I have heard good things about from Alyssa (shout out!) and so I am hoping he can get Matthew off CPAP! The Good
There were lots of exciting things today for Matthew. He had a stable day and tolerated his feeds well. Last night he had a good (not excessive) gain of 30g. I attached the mobile to his crib so that he has something to look at. But the most exciting thing was that today was the first day that Matthew took a bottle. The doctors were a little reluctant as they don't normally have CPAP babies take a bottle. But they let Matthew try one bottle today, with 10ml in it (only part of his feed). I asked to be the one to do the bottle, so I was able to at his 2pm feed today. Matthew got an A+, he did great! He didn't desat once the entire time, he remembered to breathe, he paced himself and he didn't spit up. One time a little bit came out of his mouth, so we paused and he swallowed it. But other than that he was a total champ. People definitely were shocked by how well he did. Matthew has a very expressive face (I take responsibility for that) and the look on his face when he first started was priceless. He was really thinking about it, mulling it over, and then decided he liked it. I can't wait to show Lynn his progress tomorrow, as long as she doesn't get called away for transport!
The Bad
Matthew continues to need the pressure from his CPAP and still seems to need a "whiff" of oxygen. Sometimes he is OK on room air/21 %, but then still wants the 22%. If only there were a 21 1/2 % option....
He also has a little yeast rash on his butt. They gave him an anti-fungal for a few days that seemed to take care of it at the time, but he has to start it again as it seems to have returned.
The Ugly
No Ugly today for Matthew - fingers crossed it stays that way
Matthew was, in fact, moved off (at our request) the ram cannula last night. Luckily he was only on it for 12 hours or so, and it does not seem like it caused the setback it did last week, which is good. Sean went back this morning for rounds again to make sure there was no funny business!
The Good
Matthew had a stable day today and tolerated his feeds. He was able to stay at room air for parts of the day and at 22 the other parts. He tolerated being in the crib as well as being out of the crib as I got to hold him for over an hour!
The Bad
Matthew continues to need respiratory support, and will likely be on the CPAP for at least the next few days. His weight continues to be in spurts so they may try the diuretics again soon.
The Ugly
No Ugly today for Matthew - fingers crossed it stays that way
Today Sean went up early in the morning so that he could be there for rounds and have some time with Matthew. We tried to work our schedule around the ND v. Ohio State Fiesta Bowl game, which unfortunately turned out to be not so great - for ND that is.
The Good
Matthew was promoted to a crib today. He has to be able to maintain/increase his weight in order to be able to stay in it, but Lynn had been "prepping him" all week. Sean knew they were going to make that change, but let me be surprised by it when I went there after the game. Assuming he does well we can bring in a mobile for Matthew to look at. They said he was looking up as if he wanted to look at something so I am sure he will like it. Matthew was also able to breathe at room air this morning, which is great. He tolerated his feeds well today, and was up 100g tonite. This, however, has some error built into it. Before he was weighed by a scale in his isolette, and now he has to be weighed on an external scale. The Bad
During rounds they discussed that no changes were going to be made to Matthew other than the crib and see if he could stay at room oxygen today. When I got to Yale around 5pm I was surprised to see that he was on the ram cannula again. Apparently they "forgot" about this during rounds, and they talked about it after Sean left. I was not that pleased about this, both for the obvious reasons, and because Matthew doesn't like multiple things changed at one time. Given we just got his pressure back down to 5 the other day, and given that he was changed to the crib, I would have preferred to keep him on the same cannula - especially because Lynn wasn't there today and wouldn't be back until Monday. I hinted this to his nurse today, but she thought that we needed to see how he did. When Sean called tonight, Matthew was up a little bit on the oxygen. Sean told them that we wanted him back on the regular cannula and that he doesn't seem to like this cannula. The nurse said that she was going to talk to the resident, so we shall see.
The Ugly
No Ugly for Matthew today - fingers crossed it stays that way
