Happy New Year

Happy New Year - No posts tonight!

Back at 5

Tonight was the first time in a while that Sean went to see Matthew.  He seems to officially be feeling better, which is good.

Matthew has switched from a nighttime pooper to a daytime pooper.  I believe he has done this so that he can poop while I am there and make me clean it up.  Today I was changing his diaper and he pooped out a little more.  But I was prepared with the diaper underneath.  So then I went to wipe him (he had poop all over....) but I kept another wipe under his butt and of course, he pooped some more.  He loves this game.  But since I was prepared, I avoided it going on his blanket, bedding, wires, etc.  By this point I am on to him.

Matthew also started his occupational therapy today.  They did some basic stretching and just getting to know Matthew.  They said he looked pretty good and was fairly loose.  One spot on his neck was tight, but overall he did well.  He definitely had an interesting look on his face when he was sitting up....kind of a woah check this view out!  I think his next therapy session is sometime early next week.

The Good

Matthew had a good stable day today.  He was able to be on 22 and at time room air.  They took his CPAP down to 5, which is the pressure setting he was on before the switch to the ram canula.  He also tolerated his feeds well today, and tolerated the occupation therapy session.


The Bad

Matthew continues to be on CPAP, likely for at least several more days.  Hopefully we can get off the CPAP once and for all sometime soon.  It will be nice to start giving Matthew some bottle feedings as he seems to really like the taste and his pacifier!  He lost 40g last night so hopefully we can get his weight consistent.  He had a huge increase one night and none the next.....


The Ugly

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

The eyes have it

Today was another solo day as Sean is recovering from his cold.  But Lynn was there all day, which was very nice for both me and Matthew!

The Good

Matthew had a good day today.  He was tolerating his feeds, and Lynn gave him some of the milk on the pacifier while he was sucking on it.  He really seemed to like it!  He also was able to stay on 22%(almost room air) oxygen for pretty much the whole day, even when he was on his back.  This is good because hopefully he is getting used to his new saturation requirements and rebounding slightly from his step back late last week.


The Bad

Matthew continued on the same pressure settings today, so they gave him a dose of Lasix as anticipated to try to move him along.  He also had his second eye exam today, which went OK (Lynn says it was a good exam).  Matthew's inner parts of his eyes are fully developed, which was good.  But his outer parts show stage 1 ROP.  He gets another exam sometime next week.  It may progress to stage 2, or it may stay at stage 1, or it may start to regress.  Apparently this is very common in preemies, especially ones born as early as Matthew.  We are at least hoping it stays at stage 1, but even if it goes to stage 2 they do nothing except wait and see.  Hopefully we can avoid any type of laser surgery.


The Ugly 

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

Transport

I was so excited to see Lynn this morning...I could hardly contain myself.  We were chatting for about 45 seconds when a call came in about a baby in distress at Greenwich hospital.  Unfortunately that meant no Lynn for today!

The Good

Matthew tolerated his foods today and had a pretty stable day.  He tolerated some time on his back though he certainly prefers his tummy.  He flails around like a fish when he is on his back which causes the monitor not to read well.  Everyone says his eyes are very expressive, and he certainly knows how to get what he wants....or at least try to.


The Bad

Matthew continues to need CPAP respiratory support and doesn't seem to be a fan of his new saturation requirements.  He is still on the higher pressure so hopefully this week he can get back down.  They may do another dose of Lasix or try the daily diuretics again to help him progress.


The Ugly

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

Getting back to normal

Christopher was mostly better today, and is getting back on his routine, which is good.  This means he is eating is better, his sleeping is better, and most importantly his behavior is better.  Sean is feeling a little better, though not 100%.

The Good

Matthew was able to rebound a little bit today from his Christmas dip.  He is still not at the previous settings, but he was able to go down on the oxygen versus yesterday, even while sleeping on his back.  He also gets his primary night nurse, Cassie, tonight and his primary nurse Lynn tomorrow (unless Lynn gets called away, which I hope is not the case).  He gained weight tonight, and has gained a half an inch in length over the past week.  He is now 16 1/2 inches long.


The Bad

Matthew is still on the CPAP setting of 6, which is higher than he was before his ram canula attempt, which was 5.  Orly said she is going to recommend him staying on his current settings for a week to let him recover.  I'm not sure if that is an actual week, or a week in Orly time, which is more like 3 days.  I'll chat with Dr. Montgomery tomorrow who is taking over for this week.

I did ask Orly about Matthew and his weight, as the past few days he hasn't gained much.  She was confident he was getting more than enough calories.  Tonight he gained 2 1/2 ounces, which is enormous.  At first we thought maybe the weeks he did well were because he was gaining weight, but it may be the opposite.  Because he is breathing easier he is able to gain weight.  On the days he works more to breathe, like the past two days, he doesn't gain weight because he is spending all that energy trying to breathe.


The Ugly

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

A step backwards

Today Sean joined Christopher in being ill, and also has an ear infection.  Likely Christopher had an ear infection as well, but he seems to be on the (hopefully) tail end of his cold - which is good because he was been a handful the past few days.

The Good

Matthew's feeds have been increased to 35cc today.  He has tolerated sleeping on his back more and didn't look very puffy.


The Bad

Unfortunately Matthew took some steps backward on his respiratory progress.  He was doing OK on the ram canula until yesterday mid day.  By the time we got up to visit him he was already switched back to the bigger canula.  It seems as though there were too many weans at one time, and he just couldn't tolerate it.  Matthew is very much a slow and steady, one wean at a time kind of guy.  This also means that now he is tired, and they had to bring him up to higher pressure settings than he was before he went on the ram canula, with also higher oxygen requirements.  He didn't gain any weight today, likely because of his increased labor of breathing.  This was not exactly the Christmas present we were hoping for, so fingers crossed that he can rebound somewhat quickly.  Lynn is not back until Monday, and so I clearly am counting the hours until she is....


The Ugly

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

Merry Christmas

No post for tonight - Merry Christmas!

Christmas Eve

Just a short post for Christmas Eve....

Sean isn't feeling great, so it was just me up at Yale today.  It was very hectic.  There was a new baby (again) coming in, and they started rounds late, so I didn't get much time with Matthew before I had to come back and start making the food for tomorrow.


The Good

Matthew had a stable day today, and has continued to tolerate his feeds.  They will be increasing his feeds to 33cc.  They switched his nose piece to the ram canula, which is a little bit more comfortable for him (that's what is in the picture).  We are hoping he continues to tolerate it as we get to see more of his face!  It is still CPAP, but just a hair less invasive.


The Bad

Matthew continues to need pressure support, so it will be at least a few more days until he goes on the nasal canula.  His oxygen saturation requirements have also changed now that he has hit 34 weeks, so he gets more oxygen.  Hopefully he can get back down to room air quickly.  He will be without Lynn and Cassie (his night primary) for the next few days though :(


The Ugly

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

Almost 34

Tomorrow would have been 34 weeks gestation for Matthew and Alexander, and was our end goal once we ruptured.  Each holiday represented a new milestone - Columbus Day was 24 weeks/viability.  Veterans Day was 28 weeks, Thanksgiving 30, and Christmas Eve 34.  Unfortunately we couldn't make it that far.....

The Good

Matthew's CPAP pressure was switched down today and so far he is tolerating it well.  He is also tolerating more time on his back.  He continued to tolerate his feeds and breath comfortably.  Matthew also likes to look at the black and white graphics that Lynn put in his crib, and he has been doing some sucking on his pacifier.


The Bad

Hopefully Matthew stays on a steady upward trend with his weight, without huge spikes.  His height (though inaccurate to measure) hopefully will also go up as it seems to have stayed stagnant.  Still trying to get him off respiratory support.


The Ugly

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

Stocking Stuffer

Today Sean and I both went up to Yale.  I had to go up for my 6 week appt and for my diabetes test.  While I did, Sean went to get the birth certificates.....only to be told that the office was out of paper!  When he asked when they would get more paper, they said they didn't know!  In better news I passed the diabetes test, which is good news, so no more diabetes.

We gave Lynn her Christmas present today, which she was very appreciative of.  Of course, no present could demonstrate how appreciative we are of Lynn.  We also put Matthew in a onesie previously worn by the famous Colin Budden, and put him into his stocking.  He actually tolerated our photo shoot pretty well.  As we headed out we were able to see both Kristin and Colin - who was there for a follow up appointment at Yale and looks great!!  The nurses were very excited to see him, as was Orly.

The Good

Matthew had a stable day today on CPAP.  He continued to tolerate his feeds and breath comfortably. He even tolerated a good amount of time on his back.


The Bad

Still trying to figure out Matthew's weight and growth, and get him off of respiratory support.


The Ugly

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

CPAP

Today Matthew's neighbor, Nathan, was in the middle of a procedure when I got there.  When his mom got there she was given some sort of bad news  He was moved from a crib back to an isolette.  It was a reminder that the NICU is a roller coaster even for babies like Nathan who were born full term.

The Good

Today Matthew was switched from NIPV to CPAP.  His tubing is the same, but he doesn't get breaths from the CPAP, just continuous pressure.  He has been doing well on it so far, so we are hopeful it stays that way!  Matthew also tolerated his feeds well today, and is up to 32cc.


The Bad

Matthew's weight and height seem to still be a little bit of a mystery.  He hasn't consistently followed the growth charts, and is a little all over the place.


The Ugly

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

Cider and Pie

Not much to report for today......The NICU ladies really enjoyed the cider and pie I brought them from the Jericho Cider Mill, which is nice!  Santa had left Matthew a present when he visited yesterday - a nice book for us to read together.


The Good

Matthew tolerated his feeds well today, and tolerated some time on his back and side.  His pressure settings were brought down to lower levels.


The Bad

Matthew continues to need baby steps on his NIPV settings.


The Ugly

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

Holiday Celebration

Today was the holiday party at the NICU.  We brought Christopher to see Matthew, then joined Grandma and Pop Pop at the holiday party (and Alyssa and Virginia were there too!).  They did a really nice job with the party, and all the kids got a present from Santa.  Christopher got a train, which he was very excited about - moreso than Santa himself.  When Santa came in I said, "Christopher, do you know who that is??" and he said, very casually, "Santa" without looking up from his coloring.  Grandma and Pop Pop each got a turn to see Matthew, and then we all headed down to LI for a holiday dinner.  We missed Matthew seeing Santa, but the NICU was generous enough to email us pictures.  The good news is we were able to get to the Jericho Cider Mill and get some cider and apple pie for the nurses tomorrow, and a frapple for myself and for Christopher.

The Good

Matthew had a stable day, and was able to tolerate a fair amount of time on his back or side, as opposed to his tummy.   His rate was weaned today, as opposed to his pressure.  He was up 10g today and has continued to tolerate his feeds well.  He has been starting to wear some outfits, so now I can bring the outfits that Kristin Budden sent over - super cute!


The Bad

Matthew continues to need baby weans on his NIPV settings.  He also still prefers his tummy, and needs slightly higher oxygen settings when he is not.


The Ugly

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

A big roo

Today it seemed that Matthew really wanted the Kangaroo.  He lasted for over two hours - a new record for him. At one point he let out a little cry, but that quickly went away and he went back to sleep.  He stayed at room air the whole time.  When we put him back in we got some pics with me and Matthew, and Lynn and Matthew, and Matthew solo without his big canula in his face.  We had put a small preemie onesie on him, and it was almost too small for him!



The Good

Matthew continued to tolerate his feeds, which they are bringing up to 31 cc.  He also tolerated the change on his peep, and they made another change to the pip this morning.  Fingers crossed he continues to tolerate that!


The Bad

Matthew continues to need small changes to his NIPV settings.  His weight was down tonight, but he seems to be finding a balance once they have stopped the sodium and the diuretics.  He had been gaining a lot of weight quickly and Lynn kept saying "you don't want a fat preemie."


The Ugly

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

A Brief Visit

Today was a brief visit to Yale as we had to head out early to help Santa pick out things for Christopher's new room.

The Good

Today they did another wean - this time on what is called the "peep" which is his continuous pressure.  This is a little more noticeable of a wean, but as of the early evening he was tolerating it.  Fingers crossed that continues!  Matthew has continued to gain weight - he has crossed the 1700 mark in terms of his grams.  He may be over four pounds soon!  He continues to tolerate his feeds well.


The Bad

Matthew's continues to need baby weans on his NIPV.  It may be at least another week before his switch to CPAP.  He's driving the bus though - we are just passengers on it.  He is also a little puffy so he may need the diuretics again at some point.


The Ugly

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

Flexing his muscles

Today was a very hectic day at the NICU - a lot of babies being born and one of the step down care rooms was being cleaned so those babies were all over the place.  I thought it was too loud for Matthew to come out, so he stayed in his isolette.  Shortly before I left he received some musical therapy from a woman that comes arounds and plays guitar and sings to the babies.  Matthew loves his tunes, so he seemed to enjoy that.

He is looking pretty beefy in this pic, flexing his baby muscles.

The Good

Matthew tolerated his feeds well today with the increased amount of 30cc.  He also has tolerated his decrease in pressure, and even spent some time on his back last night, which isn't his favorite position, and got a few hours at room air this morning.


The Bad

Matthew continues to need baby steps when bringing down his NIPV settings.  This will likely mean it will take him a little longer to get from NIPV to the CPAP.


The Ugly

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

Feisty

It seems Matthew is developing quite the little personality.  He loves to pull on his wires and pull off his canula and makes it known when he is upset.  Lynn and I keep trying to tell him that he needs to be better behaved breathing wise and we can get that thing off him!

I took him out to hold him like a "normal" baby today, but he was only so-so with it.  I thought he would be more comfortable that way versus the kangaroo because of his canula, but he could only get comfortable for a little bit.  After an hour he started crying and wanted to go back in.  He was also working on a big poop so that may have played into it.  He, of course, pooped right after I changed his diaper.  But I'm on to him at this point, and I was prepared for any more poop while changing him for a second time.  I can say we were able to do it without a bedding change.

The Good

Matthew had a pretty stable day today.  He continued to tolerate his feeds, which went up to 30cc.  Dr. Montgomery weaned his pressure by 2 today, so fingers crossed he tolerates it!  They have switched his chest PT to twice a day, so that he is bothered fewer times each day.


The Bad

I'm not totally sure what is going on with Matthew's food.  I think it changed again today, as he has gotten bigger and "outgrew" the previous regimen.  Hopefully he is able to keep gaining weight.

His NIPV settings are more "respectable" as Lynn put it, but we would still like to see him tolerate the weans so that we can switch him to CPAP.


The Ugly

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

A rare pic

Today I got a rare picture of Matthew of his bare face while Lynn was changing his canula.  He looks so handsome!  I sent the pic to Sean who then for a moment thought he was off the NIPV....no such luck.  But at least we got the picture.  He looks like a regular little baby in it!

The Good

Matthew has tolerated the changes in NIPV settings from the other day.  He has also tolerated his feeds and was breathing comfortably for a good part of the day.


The Bad

Matthew still needs his NIPV settings to come down.  He was able to do kangaroo for a little over an hour today, but then he got very upset and started to cry (though its nice to hear his voice!).  His weight was down 10g tonight, which is unfortunate because he was on such an upward trend.  His geneticist had brought down his calories a hair to something more appropriate for his weight.  Hopefully he gets back to gaining weight.


The Ugly

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

Home Alone

Sean left this afternoon for Florida, so it's just Christopher, me and Mr. Cags (Indiana is at Sean's parents).  Tomorrow Dr. Montgomery joins the care team.  Sean remembered her from the night we spent saying goodbye to Alexander.  I can't place her face (maybe tomorrow) but whatever doctor we had that night was very nice.

The Good

Matthew had a pretty stable day today.  They went down on his pressure by 1 and he seems to be tolerating that.  He has continued to tolerate his feeds, and they went up to 29cc today.  He also was able to continue to gain more weight (another 40g) and today he looked less puffy.  He did two poops before I got there, but he saved one more for me in the afternoon.  Luckily this time it didn't require getting a bedding change.


The Bad

Matthew's NIPV settings are still fairly high.  He doesn't seem to tolerate big changes downward.  Hopefully he continues to tolerate the small ones so that we can make progress!  I haven't wanted to take him out of the isolette because he's been so sensitive to noise/everything.  We shall see what Lynn thinks when she is back tomorrow.


The Ugly

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

St. Christopher

Today Christopher hung out at the house while Sean and I took turns going to see Matthew.  They started rounds late today, so I was able to sit in for rounds for Matthew for the first time.

In the afternoon Orly was leaving with another woman, who came up to me and said her daughter always asks about me.  Her accent threw me off, and I thought perhaps she mistook me for someone else.  It took me a until well past I saw her to put together that the woman's daughter was someone name Orshi, who was on the 10th floor (maternal special care) with me.  We went for a few walks in the Healing Garden together.  She was there for placental issues, and much like me had a long road of pregnancy issues before her current one.  She had given birth to a 4 1/2 pound baby girl about two weeks into my stay there.  Before she left she gave me an Alex and Ani St. Christopher bracelet for strength and protection that I still keep at my bedside.

The Good

Matthew had a stable day today.  Orly took his pressure down a hair overnight, and took his breath rate down twice today.  He is still tolerating his feeds well and he gained another 40g (he is up to about 3 1/2 pounds, or 1580g).  His nurse today, Betty, had him burrito'd as Matthew felt like pulling out his feeding tube (mid-feed!) and almost succeeded.  Matthew has very few "tools" at his disposal, but the ones he has he likes to use:  pulling on his tubes, pooping all over the place, and desating when he wants something (or because he wants to beep high on 22% oxygen but and trick nurses into putting him down to 21%/room air and then beeping low).

The Bad

Matthew's settings for his NIPV are still fairly high.  We are hoping that he is able to wean them down.  He was also still a little puffy around the eyes today.


The Ugly

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

Memories

So last night was our big Polar Express ride.  About 20 minutes in Christopher decided to declare that "this is boring!"  He even told that to our cart guide - Spruce Evergreen.  He changed his tune once they handed out the hot cocoa, which was his first time having it.  He also was a big fan of the sugar cookies that came after.  Then he asked, "What else do they have?"  He's a tough kid to please.  I think he enjoyed it though - but Christopher plays it pretty close to the vest.  Hopefully next year we are able to take Matthew - of course that will depend on how cold/flu season is going.

Today Sean and I were out in the hallway between rooms 3 and 4 while Matthew was getting his eye exam (more on that below).  We saw parents leave Room 3 and go to the Caroline's Room (where we were with Alexander in his last moment) with a brown paper bag (the same one we were given after Alexander passed).  Earlier in the morning I had seen the priest leaving the room and last night Sean saw a lot of family there.  Sean and I both commented how we wanted to say something to the parents, but of course what can you even say?  And would we have cared if someone said something to us in that moment?  It unfortunately was a haunting reminder of what we had been through.


The Good

Today was a stable day for Matthew.  Orly went down by 1 on his pressure, and by 1 more on his breaths.  He has been tolerating the new feeding schedule, and has gained a good amount of weight in the past few days.  He was able to be on fairly low oxygen for a good amount of the day, with some periods of needing more.  The biggest news of the day was his first eye exam.  This is something that is a big deal for preemies as the eyes don't start developing until weeks 14-16 of pregnancy and continue until weeks 38-40.  When babies are born before that, there is a high risk of issues with their eyes.  Before his exam Matthew needed to get eye drops that dilate his eyes.  I helped Lynn with the drops (she held his eye open and I put the drops in).  So I have done diapers, temperature, and now the drops.  I'm pretty much a doctor by this point.

The eye doctor explained what she was going to do - which involved prying his eyes open and moving the actual eye around.  She said she asks parents to leave for the procedure - you don't have to ask me twice.  I still have bad memories from Clockwork Orange.  The good news is that Matthew's optic nerves, while premature (as expected) are fairly well developed.  This means that Matthew is not going to have severe eye problems (such as blindness).  Lynn was really happy with the news, as was Orly.  We, of course, are relieved.  Lynn said Matthew gets an A+ for eyes today.  In terms of breathing he's about at a C!


The Bad

Matthew's NIPV settings are still higher than we would like and continues to suffer from WWB (wimpy white boy).  He is very particular about his respiratory things.  He will sat high and then if you go down 1 % on his oxygen he gets upset.  Hopefully he is able to wean these settings down.  When his pressure was taken down the past two times he seemed to have more difficulty breathing (again, very particular).  Matthew also looked a little puffy today, but Orly wants to see how Matthew "evens out" in terms of his weight, as the diuretics were causing them to have to add sodium to his diet and put him into the vicious sodium cycle.


The Ugly

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

Santa Ride

Tonight we took Christopher to the Polar Express train ride in Essex.  As it was a hectic night, I'll keep the post shorter and maybe post a pic tomorrow.

The Good

Matthew was moved up to a big boy feed schedule today - every 3 hours.  So far he has tolerated the additional feeding volume - hopefully it stays that way!  His breaths per minute were turned down from 30 to 28 then to 26.  He weighed in tonight at 3lb 6 oz, which is a huge increase.  This is good, but still suspicious.  We shall see what Orly says tomorrow about it.


The Bad

Matthew's NIPV pressure settings were put back up today.  He seems to really prefer the higher pressure, meaning he still needs that support.  He has been up and down in terms of the oxygen...


The Ugly

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

More Poop

Today was a pretty quiet day at the NICU.  The baby in Alexander's spot (a.k.a. the transient spot) has gone home.  On the one month anniversary of Alexander's passing, he is still missed.  Of course I think about him every day - especially as there are two other sets of twins just in room 4.  I didn't do kangaroo with him as he seemed like yesterday he wanted to stay in the quiet.

Matthew got me AGAIN with his poop.  I heard him make a big fart after I changed his diaper.  He had pooped.  So I made sure I had a diaper underneath him when I changed him which was great, except he pooped again as I was wiping him.  Once again, his poop went all over and we needed to do a bedding change.  He also stuck his hand in his poop and then got it all over.  So I of course had to wipe his hand as well as all the wiring.

The Good

Matthew made it through another day off the vent.  They took his pressure settings down just a little today and so far he is tolerating it (fingers crossed).  Orly said his blood gas today was good, and that they haven't been indicative of someone with Chronic Lung Disease.  Hopefully that means Matthew just needs to decide to be a little tougher and get with it.  Maybe when Lynn is back tomorrow!  Orly has discontinued his diuretics right now as he was needing too much sodium.

I forgot to mention yesterday that Matthew's 1 month ultrasound came back clear.  That is very good news.  The only other thing in that area is an MRI before he is discharged.

They may switch Matthew to an every 3 hour feeding schedule at some point in the near future.  I think they are focusing on his pressure settings for right now, but he has continued to tolerate his feeds well.  Hopefully that continues.


The Bad

Matthew's NIPV settings are still fairly high.  Hopefully those can come down, but he hasn't been "rocking them" as I would have liked (he still sats in the high 80s low 90s).


The Ugly

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

1 month birthday

Today is Matthew's 1 month birthday.  When I cut the "1" out this morning it seemed like a good size.  Then I put it next to Matthew, and it clearly looks huge.  It is crazy to think that already a month has gone by.  He had a pretty stable day today, though both room 3 and room 4 were pretty crazy today.  I went out to the cafeteria for lunch around noon and in that time some sort of craziness happened.

Matthew and I got to do Kangaroo today (it's been almost 3 weeks since we have done it).  He seemed more comfortable the last time - it might be because of the NIPV in his nose, or the room being more chaotic today, or something else.  I felt bad because last time he really liked it and this time it was just so so.  I hope we find our balance with it, because it is nice to feel his little arms and feet.  It seems clear though that Matthew does not like a lot of noise/stimulation - at least not right now.

To help Matthew get on a more steady increase in weight the geneticist has changed his iValex formula ratio (this was after a conversation with Orly, who wasn't pleased with his lack of weight gain.  As I have said before, Orly means business).  He started the new combination later this afternoon.  They are also going to add in albuterol to two of his physical therapy sessions as he sounded a little wheezy this morning.

The Good

Matthew had a stable day overall.  He had his moments, but was breathing better today than yesterday.  Orly said she could hear his breath better this morning, which is how she could hear the wheezing.  He is up to 18cc of food, and may start an every 3 hour feeding soon, as opposed to every 2 hours.  Mary Katherine (MK), his nurse for the past two days, says that this usually causes babies to go up pretty dramatically in weight.  Orly agreed with my assessment that Matthew's weight gain of 100g in one night was "suspicious" but he weighed in at 3lb 2oz tonight.

The Bad

No change down in Matthew's pressure settings today, so he is still at the upper end.  Hopefully the albuterol helps, and Orly also said if his oxygen goes up too much that she may do Lasik again.  Orly's assessment is that Matthew is essentially suffering from "wimpy white boy" syndrome.  I actually said that and she agreed, saying she couldn't say it because it is not PC.  She had tried to hint at it saying something about boys just wanting their mommy - she may have even said white boys.


The Ugly

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

Breaking 3

Today was a split up day at the NICU.  I went for the late morning/early afternoon, and Sean went at nighttime.  Orly is back on as the neonatologist for this week, and I know she really wants to keep Matthew off the vent - and Orly means business!

The Good

Matthew hung on for another 24 hours off the vent.  He didn't have any major desats except when he was being fussed with.  At his weight in tonight he finally broke the 3 lb mark, at 3 lb 1 oz.  They had gone down on his diuretics so that might have been part of it.  He, of course, could go down tomorrow night but it was nice to see!

The Bad

Matthew's NIPV settings were turned up today to where they were yesterday - essentially the max they will bring them up.  His sats were OK but he looked labored in his breathing.  We are keeping are fingers crossed he can stay off the vent and that his lungs can mature some more.

The Ugly

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

Holding Our Breath

I got to spend a lot of time with Matthew today - I got to Yale around 11am and stayed until 6:45.  I thought it best to spend as much time with Matthew during this critical time.  There was a lot of movement today in room 4.  The twins have already moved onto room 2, and another set of twins have taken their place....

Today was the first time I got poo'ed on by Matthew.  I was changing his diaper and Lynn distracted me by asking a question!  Matthew had already pooped, which was what necessitated the diaper change in the first place.  So I had pulled his diaper out and hadn't put one underneath in its place because he still had poop all over his tiny butt.  So as I was wiping it he pooped again.  It went ALL OVER.  It was on his bedding, on his wires.  So I cleaned up his butt and put another diaper underneath him.  So what did he do?  He pooped a THIRD time.  After cleaning his butt again, we had to take apart all of his bedding, etc. to change it (and wipe poop off all the wires).  I will say that the biggest benefit of this was I got to hang out with Matthew with the top and sides of the isolette off, which is a totally different (and better) experience.  I'm sure my NICU ladies know what I mean! I snapped a quick pic to take advantage of the opportunity.

The Good

Matthew made it another 24 hours off the vent.  Dr. Gozzo said it was "touch and go" last night, but he was stable today with the increased vent settings.  He was at the max pressure they would give him on NIPV, but at the end of the day that went down just a hair.  His blood gas from the morning and afternoon were both good.  Matthew also continues to tolerate his food well.  He even tolerated his respiratory treatments well today - he might have even liked it a little.

I got to hear an actual cry from Matthew today, with the help of Lynn.  When we were doing some vitals, etc, Lynn said she would take off one of the temperature sensors that wasn't working as she thought that might get a cry out of him.  It did, and then of course I started to cry a little from getting to hear it.  Lynn handed me a tissue saying it was OK to have tears of joy.  Later on I managed to get a small cry on video for Sean.


The Bad

Matthew's NIPV settings are higher than we would like.  At one point today he was at the max - so the next step would have been reintubation.  Fingers are still crossed tight that we can avoid it.

His weight has not yet reached a consistent increase.  Lynn and I are both really hoping that now we see some gain each night - I said 20g but Lynn said she would take 15g (which is about a half an ounce).


The Ugly

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

First Visit

Today was a big day for Matthew and Christopher - their first meeting.  We had talked with Christopher generally about the concept of a brother, and last night we told him we were going to meet his brother.  Well, actually he told us.  We said, "Tomorrow do you know who we are going to see?"  He said, without skipping a beat, "My brother!"  We had never even told him he had a brother!

There was a sibling/family event at the NICU where siblings could build gingerbread houses.  We thought this was a good opportunity to bring Christopher as otherwise he has about a 5 minute attention span/ability to stay fairly quiet in the NICU.  We took him to get a haircut before we went, as his hair was getting a little out of control and we didn't want CPS coming thinking we were neglecting our other child.  Christopher did a great job (other than when we had to wash hands, which he didn't like because the sinks were too big).  He even had picked out a book from the NICU library to read to Matthew, but ended up preferring to have it read to him while next to Matthew (see the last picture).  When asked later what his favorite part of the day was, Christopher said, "When I said words to Matthew, and then he opened his eyes."  I know, you could just melt.   He really did a great job and it was so sweet to see him interact with Matthew.  He asked, "When is he not going to have a boo boo?" so that he can come home.


The Good

Matthew had a blood gas done today, which came back good.  He is still tolerating his feeds well, so hopefully that continues.  He was on 22% oxygen for most of the day and has made it past 24 hours off the vent...


The Bad

Matthew needs to work more now to breathe on his own, and today he looked more tired.  As of tonight his nurse said he doesn't look as comfortable with his breathing.  They are going to try to go up on his NIPV settings to see if that makes him more comfortable.  We are really really hoping he doesn't need to be reintubated.


The Ugly

No Ugly for Matthew today - fingers crossed it stays that way.  The new baby that is in Alexander's spot will have a tough road.  I overheard Dr. Gozzo talking with the family about heart issues and Children's Hospital of Philadephia and Boston (these two places are top top notch in terms of heart surgeries), and then I heard her talking about Trisomy 18.  Prayers for that family and their baby as well.

Big Day

I was able to get up to Yale to see Matthew this afternoon, and Lynn was back today!  I am fever free (knock on wood) so hopefully it stays that way.  Sean came by after taking Indiana for her therapy swimming, and after taking Cagney to the vet for his broken nail (as Lynn said, our house is falling apart.  I thought it safest to get out for the day)

The Good

The biggest news today - Matthew was extubated!  Dr. Gozzo did a pressure test this morning, and when I called in at 11am Lynn said he had been going strong for 2 hours.  By the time I got to Yale, she had extubated him (at noon).  It was hectic when I got there as there was a new arrival in Alexander's spot (the twin that was previously there was moved to the other end of the room to be next to his brother) and Lynn was busy with another baby at the time.  I came in and saw him with the NIPS tube, and started tearing up.  He was on 29% oxygen, but over the afternoon it came down to 27, then when we called later it was 23, then 21/room air.  He still has his desats, but right now he comes out of them himself a lot, and if not he gets some more oxygen.  He even tolerated the little vibrator massage in the afternoon pretty well, and the respiratory person said his lungs sounded good (she said it sounded like air whirring around, which is good).

The NIPS tube provides both pressure and breaths when Matthew forgets.  He slobbers a lot right now because he doesn't really know how to swallow.  He yawned and opened his mouth a few times to the point where you could see his little tongue!  His voice is still hoarse from the vent, so I have not yet heard any cries from him (Sean thinks he heard some sounds from him, but I have yet to confirm anything!)

Per his usual, Matthew did giant poops for the night nurses.  When I change his diaper during the day there is a tiny amount of poo, if there is any.  He stocks up for nighttime and explodes - usually outside the diaper and often requiring a sheet change.

The Bad

Matthew was down an ounce - he was up an ounce surprisingly yesterday, so likely this was a delayed result from the Lasik.  Hopefully now that he is on the gentler diuretics he more steadily gains weight.  Obviously our fingers are also crossed that he is able to stay extubated this time.

The Ugly

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

Day 2 at home

Today was spent pretty much in bed.  My temp was up and down, with the up being just at 100.3 (100.4 is the fever cutoff so it looks like I avoided that today).  The redness has also gone down, which is good.  I definitely miss Matthew, so we shall see how I feel tomorrow.  These pics were taken by Sean.  His hair is definitely getting lighter.....

The Good

Today was a stable day for Matthew.  His vent settings were good, and his oxygen was pretty low today.  He also tolerated his food pretty well and we hope that continues.  His nurse tonight (Cassie, his primary night nurse) said he gained an ounce, which is great given that with the Lasik they thought for sure he would be down again.



The Bad

Matthew is still on the vent, so that's the biggest Bad right now...They will be starting him on daily diuretics (something gentler than Lasik) so that's both a good (hopefully in terms of its effects) and a bad.  Matthew also had to get another blood transfusion today.


The Ugly

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

Give me an "M"

M - for Mastitis.  Last night I started developing some pain on my left "side" and had a low grade fever and the chills.  Within about three hours that fever progressed to 103.8.  I was pretty certain it was mastitis.  I went to Longwharf today and they confirmed it (they said, this is the "textbook case of mastitis" - I had been hoping they could have called in the Rx for antibiotics in the morning, but unfortunately I had to trek up to Yale for the official diagnosis).    When I went my temp was down to the 99s, but then went back up to 102 in the late afternoon.  I am now hovering around 100.  They said that if the fever continues, or the chills continue, I have to be admitted to the hospital for an IV of antibiotics.  Hopefully by tomorrow it clears a little, and I don't need to be admitted.  It also sucks because I couldn't go see Matthew today (It shouldn't be contagious but I am pretty run down.  Essentially you feel like you have the flu).  This is the first day that I wasn't with Matthew, which really sucks, and likely I won't be going there tomorrow either :(  So not only don't I get to kangaroo, but I don't even get to see him!


The Good

Matthew has been on a three day dose of Lasik, and today is the second day.  He seems to be responding to it as he peed a lot today.  He also had a pretty stable day today and was between room air and 24%.  Michelle, his nurse today, said he was pretty alert.  I am hoping he gets more alert as that might help him get off the vent.  He has continued to tolerate the feeds well, which we hope will continue.


The Bad

Matthew's weight was down a little bit due to the Lasik and will likely be down again tonight as he peed a lot today.  The doctors don't seem concerned yet over the weight, but hopefully they talk about it at rounds tomorrow just to be sure they are OK.  More weight gain (not water weight) will help him to get off the vent...


The Ugly

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

Beef Up

Today was a pretty typical day.  It was pretty hectic in the NICU, but luckily not because of Matthew.  Parking was a little frustrating as the entire garage was full.  I was about to try to talk my way into parking on the Smilow Cancer level by playing the NICU card, but then I found and stalked a nurse back to his car and was able to take his spot.

I wimped out of kangaroo care today.  Just when I think I am OK, I start to cough or sneeze.  Lynn said today that if I need a cough drop, maybe hold off.  So just in case I did.  We shall see how I feel tomorrow....


The Good

Matthew is continuing to tolerate his foods.  He went up to 17cc of food today still every 2 hours.  They also put him on oral Lasik to see if that helps his breathing.  He had a pretty stable day regarding the oxygen, which I attribute to Lynn being with him today!  She is gone until Friday so I hope Matthew is OK.

We also confirmed that Matthew does not have SCID, which he flagged for on the newborn screening.  While it has a high false positive for preemies, I was still nervous about it because it is pretty serious.  Matt, the resident, said it is "extremely rare."  I said, is it more rare than 3MCC? Because that's like 1 in 60,000  - we are the king and queen of rare.  Well, further testing confirmed that he is clear from allergy and immunology, which was a big sigh of relief.  Though I will say, Matt last night started with, "Did anyone talk to you about the TRAC (SCID) results?"  I was like, "Um no, does he have it????"  He said, "No he is clear."  Maybe next time lead with that....


The Bad

Matthew was up and down on the oxygen today, but nothing too terrible.  He has his periods where he is content and his periods where he is not.

His weight is still up and down.  It seems they want to see him gain weight more consistently, and make sure it is not water weight.  He eats a lot so I'm not sure where else it would be going.  Lynn and I both thought he looked pretty beefy today.  You can judge yourself from the picture.


The Ugly

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