First doctor visit

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.

Home!

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.

Blizzard

No post today because of the blizzard - no visit to Yale!

Wall of Hope

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

Songs

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

Poop again!

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

Tube Out!

Today we tried some non-NICU bottles for Matthew.  It seems he might like the MAM bottles, which would be great because those are his initials!

The Good

Matthew's NG (feeding) tube was removed last night!  He is officially just on bottles!


The Bad

Matthew continues to need respiratory support.  His rash on his butt might be reappearing....


The Ugly

No Ugly today for Matthew - fingers crossed it stays that way

Neighbors

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

One

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

Back

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

Mohegan Sun

Sean and I will be at Mohegan Sun tonight, so no update for tonight!

Snuggles

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

Cold and Flu

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

Group Therapy

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

Rare

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

Getting Crowded

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

The New Space

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

The big 2

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

Hot Shots Part 2

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

Hot Shots Part 1

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

Daddy's Turn

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

Memories again

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

Bottles and Cribs

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

Back in business

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

No Fiesta

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