And the Countdown Continues....

Unfortunately, Luca is STILL in the hospital.... and Tuesday ended up not bringing him home to our arms as it was supposed to.  He was scheduled to have a swallow study done on Tuesday at 1:45pm, and rather than taking him there myself (which would be a logistical mess with the other kids), I just had the hospital transport him to Children's Hospital in Boston to get the study done, transport him back down to our hospital, and then the plan would be that he would be discharged that evening.  He hadn't had any heart rate spells or breathing issues since Thursday-when they started thickening his formula with rice cereal.  So, everyone thought the problem was fixed!  They just wanted to complete the swallow study to ensure there was no anatomical reason he needed thickened formula-and that it indeed was just that his throat muscles/tongue still needs time to strengthen and get coordinated for swallowing. 

A swallow study entails taking a number of xray scans repeatedly while Luca is taking a bottle that happens to have some barium in it.  They watch how he swallows, and watch where the milk goes.  What they actually found was that with regular milk he was aspirating some of the milk almost down his lungs every time he would swallow.  His swallow reflex is just a little delayed.  After they saw that-they then thickened the milk with a little rice cereal and watched him swallow again.  They found that it helped a little bit, but not completely.  They then added more rice cereal to his milk.  In fact, they added the highest recommended amount of rice cereal that is suggested to add if a premature baby has this kind of problem.  When they did that, they saw that his swallowing was fine.  There was no problem with any milk trying to head down to his lungs instead of his stomach. 

So there we have it, Luca's swallowing muscles and swallowing coordination just need a bit more time to 'catch up' to how strong they should be at this time (there is no apparent mechanical problem or neurological problem causing it).  Until then, we keep adding rice cereal to his milk and we just keep watching him a little more closely to make sure he paces himself during feedings-taking that break to breathe.  They didn't let him go home on Tuesday because they want to watch him on this thickened formula for a few days, making sure that he tolerates it ok, and still gains weight, and continues to have no spells.  So.... now we are looking at Friday for discharge!  He did fine all night last night and has done fine so far today on this thickened formula.... so it looks good.  He gained some weight again last night too.  He is now 8 pounds 15.6 ounces! 

They will plan to do another swallow study in about 6 weeks to see if he has improved and if we can reduce the thickness of his formula again... and get it back to 'normal'. 

So hopefully our next post will include a picture of the whole family together.... (please, please, please)...

The Luca Countdown

We have finally reached the end game of having Luca in the hospital.  The big hurdle for him leaving was to be "spell" free for 5 days.  The last time he had a spell was 7:30am on Thursday, so he's at 3.5 days and counting.  At this point, the hospital is planning on discharging him on Tuesday.  All of the nurses have been saying how he's been a different baby the last couple of days, so we know that he's coming home.

So what caused this miraculous turnaround?  It seems like for weeks Luca has been having around 3 spells a day, with no noticeable progress.  On Thursday the providers tried a few things to lessen Luca's reflux, which is what they thought was causing the spells:

1. They increased his dose of Prilosec
2. They started giving him Maalox before each feeding
3. They started mixing rice cereal into his formula to thicken it up

Of course, I also have my own theory, which is that maybe he just outgrew it.  Regardless of the reason, he's been spell-free, more alert, and just generally a happier baby.  Today he seems to have adjusted to the new diet (unlike Friday night that I spent in the hospital where he was up most of the night with gas pains). 

At this point we're just counting down the hours until our family can all finally be in the same room together. The panic associated with having Luca home has not set in yet, as in do we have the house ready for him.  We certainly have all of the baby stuff that we need, but it's not necessarily in the right place, or even clean.  I have a feeling that I'm going to be up late tomorrow night getting everything straightened away for his arrival.  No matter how much work it's going to be, we'll be so happy that he's home.

Vince Goes to Train Heaven

Last weekend we ventured into Boston for the Open House Weekend at the Bay State Model Train Club!!  Thanks so much to our friends that were going, who thought of Vince and invited us along!  This was the most special of treats as the members apparently only open their club to the public two weekends a year (probably to keep grubby little kid hands from tearing apart their models, lol!).
Vince got dressed up in his train conductor outfit(as he does everyday), and hopped around the house like an antsy jumping bean; barking orders at us until we finally got in the car and were on our way.

Well, it truly was an amazing display of working model trains if I must say so myself.  Complete with scenes from the Colorado Rockies, working electric trolleys, and little intersections around the suburbs of Boston, including the commuter rail and the Ashmont trolley (my favorite!).  They even had a little fake car accident set up-complete with person underneath car, as well as a 'clothing optional' nude beach!!  Luckily we had to keep the kids on our shoulders so they could see everything.  This meant we could avoid the nude beach if we wanted to haha! 

Vince telling me I was 'breaking his concentration' while looking at the trains, seriously kid?!

 The Roundhouse/Central Station

 steam train cruising through the Rockies! with replica Aspen Trees-I sooo want to be there!

scary white man giant- hovering over the Rockies

 The logging mill

The Ashmont Trolley coming down the street, and commuter rail in the back!

The Train Club added some Thomas Train characters to their mix for the kids sake

There goes Thomas speeding by, hauling the passenger cars Annie and Clarabel! 

We were also excited to find out there is a South Shore Model Train Club, which will have their open house in a couple weekends.  So look out for more chapters on visiting model trains!

A Special Birthday/Hospital Weekend For Us!

We had a very busy weekend!  Saturday Mike had to work, so my mom and I were on our own for the day.  It was her birthday, but we weren't going to celebrate it until that evening.  So instead what did we do?  You guessed it, it was off to another kid birthday, as Vince's classmate Isabel was celebrating her 4th birthday.  It was held at a rec center, led by a group of activity directors who organized the kids in waving around a parachute, playing running games like red light/green light (I remember playing that!), and keeping the piñata line from getting too close to which ever kid had the baseball bat.  Although most of the activities were geared towards 3-4 year olds, Zoë got right in there and did her best to keep up.  It was SO ADORABLE to watch her having fun with the big kids!

Getting the balls off the parachute (although Zoë kept throwing them back on)

 She opted out of getting under the parachute to yell happy birthday to Isabel

 The AMAZINGLY good birthday cake with marzipan fondant

 ON TO MY MOM'S BIRTHDAY!

Vince and Zoë spent most of the day yelling "happy birthday Grandma!!" at random times.  Well, Vince could say it.  Zoë really tried hard though ;).  We decided to hit up the Abington Ale House to take advantage of the free birthday dinner there.....but also because my mom loves the glass encased, life size, cowboy slot machine that they have in the bar area (lol!).  Something that I unfortunately did not get a picture of, but next time.  We had a nice time celebrating at dinner, and we feel fortunate to have had my mom with us to help out for so long.  We were so happy to celebrate another year with her.

Happy Birthday Mom!  Here's to you!

here's the other side of the table, clearly my mom and I were on the more relaxing side ;) 

 

AND NOW ON THE THE HOSPITAL

I spent last night at the hospital with Luca, in order to get used to him being on the home monitor, and to get used to his schedule of feeding through the night.  Wow, was it a painful reminder of how exhausting it is to have a newborn... and how little sleep you get.  From 10-2am I was dealing with his poor gassy belly and reflux.  He would only calm down and sleep if I was holding him..... unfortunately something I couldn't do while simultaneously sleeping myself.  The nurses keep telling me I'm going to curse them, because they hold him a lot and help him fall asleep that way.  I don't know if he's used to it or not, but he sure seemed happy and peaceful in my arms.  Then as soon as I would put him down to try and lay down myself, all hell would break loose.  I finally got him to sleep in the baby swing for an hour, and then it was time to wake up again and take another bottle.  His belly gas was much better this time, and he sucked that bottle right down and went right back to sleep in the baby swing.  Thankfully this time he slept from 2:30am all the way until 6:30am when the nurse woke us up to get ready for another feed.  So I do have hope that maybe I'll be able to get a few hours sleep at a time when he's home! 

The good news is that the portable monitor that he was on didn't go off the whole night.  Now, if that thing does go off everyone will be jumping-because it's ridiculously loud.  In fact, the medical supply lady said it's so loud that sometimes it's enough to startle the baby into breathing again if it goes off.  Wow, I don't look forward to that going off in the middle of the night, hopefully it never will!!  Overall he did well with his feedings overnight.  I did notice on two different occasions that he started looking like he was going to spell, so I took his bottle out of his mouth and patted his back and rubbed his head until he started breathing again.  It's all feeling a lot more comfortable than even a day or two ago.  We are still unsure if he's coming home this week.  Another, more conservative, doctor at the hospital wants to see Luca have less than 2-3 spells a day if that, and also doesn't want his heart rate to go below 80 when he does have a spell... so he needs to work on those goals now.  Keep up the good work Luca!

Here he is happy in my arms last night

Our (Corrected Age) 4 Day Old

Luca is one month, 3 weeks, and one day old.... but all the doctors and nurses say we should be correcting his milestones to his due date, and expecting only from him the same things that a 4 day old would be doing.  Apparently this age correction thing is supposed to go on until Luca is 2 years old, which is when preemie babies are supposed to be normally caught up.  He is still having spells where he stops breathing for a brief amount of time, which in turn makes his heart rate go down too low.  But thankfully these spells only happen during feeding, as opposed to during his sleep.  If it happens during the time he is feeding from a bottle, we are watching closely while he feeds and we can take the bottle out and help remind him to breathe (pat his back, change positions, check his tongue, etc).  He is having about 3-4 spells a day now, which is better than last week where he'd have about 7 a day.  The original goal was to have him spell free for 5 days before he would be able to come home.  But now that goal has changed a bit, because Luca is what the nurses call 'a lazy little white boy baby'(in the most loving way of course).  Apparantly Caucasian male babies typically take longer to grow out of this sort of thing. 
So, our new goals are that if Luca does have a spell, it's only during feedings, it's a quick spell that he resolves himself, and most important of all, we feel comfortable feeding him and can tell when he might have a spell.  I'm working on that last one, but I do feel pretty comfortable with feeding him now.  Plus, he will be coming home with a monitor per my request, so I feel much more comfortable about it.  The doctor believes Luca will grow out of these in time, and even term babies are known to have 1-2 spells like this a day during their first 1-2 weeks of life.  I'm going to spend the night at the hospital on Saturday night so I can get used to being with him on the monitor, and get used to taking care of him myself-while having all the medical staff in the next room should I need them.  If everything goes well, and we feel comfortable, he might come home early next week! 
But don't jump in the car to come over just yet!!  The hospital advises that we have little to no visitors at our home until sometime at the end of April or into May.  This will help minimize his risk of getting a respiratory infection, or RSV (respiratory syncytial virus)-a common cold virus to adults but which can be detrimental to babies/preemie babies.  With that being said, now I'm going to be constantly worried about Vince and Zoë bringing something into the house-being the little boogie nosed coughing toddlers that they are.  We'll just have to be extra careful I guess. 
He's just a smidge under 8 pounds now, Last night he weighed 7lbs. 15oz.  So maybe tonight he'll have broke the 8 pound mark.  Unfortunately that has nothing to do with him getting over these breathing issues, but at least he's growing, which is definitely progress! 

Me and Luca get some cuddle time

sweet little baby boy