NICU Chairwoman

Busy day in the NICU today. We didn't get a whole lot of time to visit with Mia because the docs were doing a procedure on another baby in her room.


Francesca was able to feed her though, and then nurse Louise put Mia in her little chair for some chill time.

She was very relaxed and comfortable.

Pink Girl

The plans are in motion for the transfer to Boston. It looks like we'll be heading up there on Monday. Mia, by ambulance, and mom and dad following behind in our car.


Mia is doing pretty good still. Putting on a little weight and drinking from the bottle. Some of the nurses have told us they're sorry to see Mia go, but understand our decision. They've all been wonderful to our little Mia.


Mia is excited to experience some of the rest of the world and to see what sunshine is finally. We've been telling her about it for weeks, but it's really something you need to see to believe.

Keep keepin' us in your thoughts and prayers. We get so much of our strength from our amazing support system!

Boston Bound

We've decided to transfer Mia's care to Children's Hospital Boston. We feel that Stony Brook has done a great job, but that it's time to move on to more specialized care. Mia is doing okay, but she's not really putting weight on fast enough and again the doctors are puzzled.


The results from Mia's MRI on Friday showed all sorts of underdeveloped areas of her brain. There is no way to know how this will affect her development in the long run, for now we're just taking it minute to minute.


Little one and daddy 3/26/07


Burpin' time 3/25/07

6 Weeks

Hard to imagine that 6 weeks have gone by since Mia was born. It's been a blur with its ups and downs, but we thank God everyday for the beautiful miracle that is Mia.



She is continuing to do well with her feeding. We are hoping the doctors will retest her this week and she will be able to come home at last.



Her lactic acid level is hovering around the 5s, going up and down with no rhyme or reason. Mia is much more alert and conscious lately and really showing her strength through all of this.



We are still waiting for the results of the genetic testing to find out exactly what kind of condition Mia has, but the doctors have already been treating her for a possible metabolic disorder. The only treatment is adding certain enzymes and nutrients to her diet. It's hard to say if the treatment is working or if it's just Mia and her strength and will to get better. I think it's a little of both.



She is certainly encouraged (as are mom and dad) from the outpouring of love that is coming from literally all over the world. Thank you everyone for your love and support. Mia has many angels on her side!

Happy Spring!

Mia had a totally awesome day today. She drank really well from the bottle. We fed her and she took a full bottle of 60cc's. We spent some time holding and cuddling her. It was getting late so we put her down to sleep in her crib, but she starting waking up.


She started to cry a little bit and we soothed her, but soon nothing we could do would stop her crying. Turns out she was letting us know she was hungry again, because as soon as Nurse Christie gave Mia the bottle she attacked it with fervor. We were so happy to see Mia acting like a normal baby! It was time for us to leave the NICU, but we're sure Mia drank it all. A great start to Spring!

A better day

Mia did much better today with her bottle feedings. I fed her at 5:30 pm, and she took the full 45 cc's like a champ.


The latest condition she has been diagnosed with is excessive cuteness that causes a high level of kisses to grow on her hands, face, and head whenever friends and family are near. As far as we know, there is no known cure. It is a father's worst nightmare.

99 Bottles of Milk

Mia was a little less eager to take her bottles today. I think she was a little tired from her busy day on Sunday. The doctors are going to look at her swallowing mechanism to make sure everything is working properly. Then it's just a matter of her coordinating the suck swallow breathe.


She was happy just to be in our arms, and we were happy to have her there. There's nothing quite like holding that little angel.

Eat Sleep Poop, Repeat

Even though St. Patty's day has come and gone, Mia doesn't want to stop drinking. She had a better day today with her bottle feeding. Francesca got to feed her twice with the bottle and she took the full amount and didn't lose her breath. Mia's nurse showed Francesca another technique using the special bottle and Mia really responded well.

Mia was very excited to see so many visitors today, especially to meet her Grand Aunt Maryann and Uncle Victor, who made the trip to Stony Brook from Katonah, NY, just to see her. See you soon!

5 Weeks

Mia continues to put on a bit of weight and is still taking her bottle. The bottle feedings have been a little touch and go. Mia's got the suck and swallow part down pretty good, it's the breathing at the same time part that's tripping her up. Not the end of the world, it's something she'll get down eventually, but it's enough to make us and the NICU staff feel she's not ready to come home just yet. As soon as she gets the breathing part of the eating equation down solid, she'll be ready to leave the NICU.


She's maintaining her weight and adding a bit (as evidenced by her growing double chin), maintaining her body temp, and spending more and more time awake.

More bottle

Mia did so well with the bottle today. We worked with her again and feed her a full bottle. They are so happy with how she's doing, they're going to give her the bottle for each feeding today. She was very active while we were feeding her and even got upset when we took the bottle out to burp her.

The doctors are thinking of discharging her Monday. We'll see how it goes!

A change of plan

Yesterday the doctors spoke to Francesca and suggested that Mia stay just a little longer than originally planned. The reason being is that they have been having some success getting her to bottle feed with a special bottle designed for babies that have a hard time sucking normally. They want to get her to the point where she can bottle feed for every meal.


We discussed it again with them today and they feel very strongly that if Mia continues to do as well as she has been with this bottle, there may not be any need for the G-Tube. Mia underwent a full GI exam today and everything was normal. She could get the operation for the G-Tube if we wanted, but it may not be necessary.


This makes us very happy, because we really didn't want Mia to have to undergo any surgery. We fed her today with the bottle and she did really well. She drank the full amount (45 cc's) and then was very active and awake after the feeding.

The night nurse said she did well with the bottle and is gaining weight again. She started to lose a little bit when the doctors took her off of her liquid nutrients and put her on formula only.

We have also been in contact with a doctor in Boston who specializes in pediatric metabolic disorders. There is a good chance we will take Mia to see him once she is discharged from Stony Brook, just for a second opinion.

Mia on Monday

Sorry for the lack of posts lately, I'll try to catch up. Here's some pics of Mia on monday.


Jean Ann came to visit.


Francesca with Super Nurse, Cindy. We love Cindy.

Mia Movies

I'm experimenting with getting some Mia video online. These seem to work, and I'll get some more going in the future. Two short one's here showing Mia quite comfortable in her crib.








In this short video, Mia realizes there's more to life than just her little crib, and begins to check out the rest of the room.


Here, Mia has had just one to many kisses and retaliates with the deadly one-inch punch, perfected by martial arts experts centuries ago.

Crib Time

Mia moved into her crib today and seemed quite comfortable in her new surroundings. She's till tolerating her full feedings, now up to 45 cc's, though she still has a hard time with the bottle.


Nurse Katie said most probably Mia will be able to come home next week. However, since she is still not taking a bottle every feeding, she will need a Gastrostomy Tube (G-Tube). The G-Tube can deliver formula directly to the stomach if she's not drinking from the bottle.


Obviously we'd love to avoid this, but Mia's made it quite clear she's going to do things her way. It's just thrilling thinking about her coming home at last.

One Month!

Mia celebrated her one month birthday by coming off her IV liquids and taking a full 35cc's of formula! She tipped the scale to 6 lbs, lowered her acid level to 3.2, and sucked on her binky with gusto! She also looked fabulous in her brand new pink hat, loving sewn by Grandma Marilyn.


It's amazing how far she's come in a month. Tomorrow she may finally be moved into a crib and out of her isolette. That in and of itself is significant as it means she's that much closer to coming home.


Grandma Marilyn inspects her handiwork.


Mia gives the pirate eye - a favorite of hers!

Happy One Month girl!

Love Supreme

Tommorrow Mia will be one month old. It's hard to imagine a month has already passed, yet here it is. To say that the past 28 days have been the hardest days Francesca and I have ever had to endure would be an understatement. But to not mention that even in the darkest of moments, there has been the greatest feelings of joy and happiness imaginable would be a disservice to Mia.


What any parent reading this knows, and we are now discovering is there is no greater purpose in life as far as I can see than creating and caring for a child born out of pure love. What is it about babies that bring out the best in everyone? Is a child not a messenger from God, reminding us of all that really matters? We are here to care for and love one another. Growing and surviving in this world depends on this; without love we are lost.


Mia is the greatest gift I could ever hope for in life. I have never known such pure joy and love as I do know. She has come here to teach us many things, as she already has. To love a child such as this is to know what it is to really be alive. To be the father to such a precious child is my honor.

A little bit further than we've gone before.....

So far this week has been a huge improvement over last! Mia is growing bigger and stronger - almost 6 lbs now! She's taking 30 cc's of food and has started drinking from a bottle for at least two feedings a day. Grace, the physical therapist that works with Mia is very happy with Mia's movements, reactions, and awareness, which is very encouraging.


Her lactic acid level is dropping again, now at 5.4. It was down to 4.6 two days ago, now it's gone up slightly so not sure why that's happening but we'll see.


They are going to increase her feeds to 35cc today with the goal of 60cc being her full feed. 60 cc's is a little more than 2oz.

Mia has come a long way, but she's got some more work to do before she's ready to come home. The nurses are absolutely wonderful with her.


Today Mia moved into a new isolette and nurse Katie dressed her up in the cute little outfit you see here. It's nice to know so many people are caring for out little girl.

Week 3

3/1/07

The past week was incredibly difficult for us. Just when it seemed that Mia was doing so well she simply stopped eating for no apparent reason whatsoever. The doctors did numerous x-rays of her stomach and intestines and they showed no blockages. Truly baffling. Her lactic acid level rose back to 8. The pick line that administers her liquid vitamins and lipids intravenously broke off and need to be re-inserted. This requires a surgical procedure and they weren't able to get it after four attempts. They finally got in on the sixth try the following day. Stressful times indeed.


3/1/07

The only one not seeming bothered by all of this was of course Mia. Her perseverance in the face of all that is happening to her is truly inspiring. On Friday they tried to feed her again. 5 cc's of breast-milk this time, 30 less than they had been giving her before she stopped eating. She accepted it this time as mom and I released a collective if not tentative sigh of relief.


3/1/07

We came back to Port Jeff on Friday to stay close to the hospital in case we need to be there quickly. It felt good just being here, knowing we were close. We're planning to head back east tomorrow.


3/4/07

Yesterday was Mia's official due date, though mom and I are convinced even that may have been a week early. Regardless, our baby is again taking her food well. Today they increased her feeding to 15 cc's and she's taking it. She looks great. She's growing. She's about 5 lbs. 8 oz. now and getting more and more beautiful each day. The nurse took her off of the candular breathing tuber yesterday, and so far she's breathing really well.


3/4/07

Her acid level is back down to 5.5 today, and again we hold our breath and wait. We are a few weeks closer to getting the results back from genetic tests and getting some answers. The doctors are administering a combination of different nutrients to help with the high levels of lactic acid now, so we'll see what result that has in the coming days.


3/4/07

Thanks again to all for the well wishes and prayers. They mean the world to us.