Mother Knows Best

My instincts have been right on from conception.  We found out today......IT'S A GIRL!!!!!  Today we are exactly at the first day of our 18th week.  Our baby girl is right on date.  She's measuring 8 oz which is perfect for her gestational period. This is great news for us because with Gianluca we wern't as lucky. I could feel, though, that she was growing bigger, faster.  She's a mover, too.  The nurse was surprised that I could already feel movement but I've felt flutters progressing for the last few weeks already.  We are going back in 4 weeks for a follow-up because it's a bit early to get great results with looking at the heart and spine.  That doesn't mean that they don't look good now, it's just, developmentally, over 20 weeks is a better time to view those details.

To sum up, we are thrilled!  My husband screamed for joy that it's a girl and I am feeling relaxed that she is moving along perfectly.

Catching Up

I realize it's bee many months since I have updated.  With Facebook the blogging gets a little obsolete.  Gianluca hasn't had much going on so there really hasn't been much to share.

Over the summer we spent most of our time just playing and exploring.  Gianluca has really developed his speech, in fact he's pretty much caught up for his age.  We discontinued Occupational Therapy because he was doing so well and we just saw it as a needless appointment in his life at this point.  He does continue to get Speech and Physical Therapy.  Every Monday he is so excited that Sue and Jill are coming.  He runs down the hallway to greet them in pure joy.  It will be very sad when we discontinue their services.

We took a family trip to Myrtle Beach this summer.  It was Gianluca's first time to the beach and seeing the ocean. He wasn't terribly thrilled.  I think the loud crashing waves and rushing water just frightened him. He warmed up to it enough to put his feet in but that's all.  He wasn't even really excited to go in the pool.  Sticking to a bath tub for now.  Seems to be more his size and he can splash away in the comforts of home.

Most of the summer he spent visiting the ducks by the river and exploring his love of anything automotive.  He cannot take his eyes off busses, trucks, trains and airplanes.  He's even starting taking his toy trains and cars to bed with him.  Just like a little boy.  Gianluca has a softer side, though.  He loves his stuffed animals.  He drags them around and gathers them up to snuggle in.  His biggest obsession is the 53" teddy bear that was bought by the encouragement of his grandparents.  He LOVES that teddy.  It sleeps next to his bed, he wrestles with it and lays with him when he's watching cartoons.  I think between the cars and stuffed animals, he's pretty well balanced.

Gianluca does continue to visit Children's Hospital Clinics.  We've got it down to just Pulmonary Hypertension and Feeding Clinic.  We had a failed attempt at an ultrasound to look as the ASD in his heart.  He still needs to be sedated for those appointments so we may try later in the year.  The issue that continues to come up is his weight.  They would like to go in and repair the hole but he is still too small.  The doctors really know how to pressure you to feel guilty that you don't do enough to help your child gain weight.  What they don't understand is that Gianluca is a typical 2 year old.  He runs and plays and giggles just like every other child. He has no limitations.  He's been pretty well stuck at 21 lbs for quite some time.  The interesting part is that he's growing out of his clothes.  Mostly in length, but he's been at 31" for quite some time as well so it's a bit boggling how he's growing.

The feeding clinic is just an annoying place to visit.  Gianluca still eats strictly pureed foods.  He refuses to try finger foods or to chew.  Anything that requires chewing he gags on.  We have varied the textures that he eats but it's challenging.  How do you try to teach a child to eat diversely when you also need to get him to gain wait?  It's a battle we deal with daily. We continue to just have faith that eventually he will get old enough to realize he can chew.  The feeding clinic is working on getting him to take more foods.  It will be a slow process.  For now we continue to search for high calorie choices for him.  Pudding has been top of his list which is easy to make and have on hand.

So while we are watching our little baby become a big toddler, we have be given another blessing.  Gianluca is going to be a big brother.  It's amazing how a new baby on the way has stirred up the questions and concerns.  Most people wonder if we are scared to try again after everything we saw with Gianluca.  The interesting thing, as I look back to my first pregnancy, is that there was a lot of induced stress on the doctor's part.  It began immediately from week 8 with Gianluca.  Doctors weren't sure of what the outcome of the pregnancy would be so they insisted on medicating and many tests and ultrasounds.  They kept him under a microscope and kept us filled with fear because they could never explain themselves.  In hindsight, I think we could have prevented his early arrival had we just found more relaxation during that pregnancy.

Well, I have a different plan this time around.  I have a whole new group of doctors.  The OB that was with Gianluca is moving so she couldn't take us on as a new patient. That ended up being a blessing because we have a new OB that is encouraging and supportive of my decisions.  The same goes for the perinatal doctors. I have refused to see the same one we had with Gianluca.  Now we have a very laid back doctor that respects my decisions to not over medicate and to leave all the junk in the past.  I think that we forget that we get to choose our fates.  The doctors to not decide for us and cannot.  Unfortunately, sometimes it take tragedy to learn that.

So, up to date we are just about 18 weeks along.  We had our first ultrasound at about 11 weeks.  Baby was perfectly sized for gestational age.  Tomorrow we will have our next ultrasound.  It will be exactly day 1 of our 18th week.  We will being doing another measurement and finding out the sex of the baby.   This should give us a gage on how the pregnancy is progressing.  I'm not worried. I can already feel this baby is growing more progressively than Gianluca.  This one is a kicker, too.  Fetal movement started early and continues daily.

My goal in this pregnancy is to make it to third trimester.  My blood pressure this time around is much lower than when I had Gianluca.  Again, stress plays a huge role.  Gianluca is really great at keeping me smiling.  Even though we are dealing with some temper tantrums, the most of the time he is all giggles and smiles.  One thing that has been expressed by the doctor is that she doesn't plan to take me past 37 weeks.  There is still worry about developing preeclampsia with my high blood pressure so that's her limit.  With a due date of March 13th, that could mean we will be having a February baby.  I'm satisfied with that.  It just brings us joy that Gianluca will be able to share his love and kindness with a younger sibling. He really has blessed our life which gives us faith for this pregnancy to go well.

Stay tuned with the results of the ultra sound tomorrow....girl or boy?

Where we're going

I can't say that blogging is my talent.  Our lives have been so busy I just forget to write it down.  I truly and thankful for writing as much down as I have in the past because I realize how much I forgot as we move forward.  Daily, we are reminded that Gianluca is 2 years old.  He may wear 3-6 month pants but his terrible 2 attitude is expressed in everything he does. 

The latest on his weight is that he still hasn't quite hit 19lbs.  He's getting taller, about 30 inches.  He is just too smart when we go to the doctor now.  He knows immediately when we arrive and he knows what's going to happen. His death grip comes out and he cries.  We have to stand on the scale with him to get his weight.  I recall one visit to the doctor where we got his weight and height in the midst of his screams and when we said "all done" he sniffled and looked at the nurse and said, very loudly and clearly through his sniffles, "BYE".  Gianluca is a very tough little man.  It was the same strength and attitude we viewed while only days old in the NICU.

This week's visit was to Pulmonary Hypertension and to have a swallow study.  His heart meds were increased with his weight.  I have to say the side effects of that make me wonder about the long term effects.  We've been waiting on the swallow study for some time.  We had out visit to the feeding clinic about a month back.  My request was to increase the variety of his foods and to remove the g-tube.  Once the swallow study was scheduled I scheduled ahead for the g-tube to be removed.  It was not easy to do.  The nurses fight you when you don't have a doctor asking for the appointment.  I just knew it would be difficult to get the appointment if I didn't plan early.  As far as the results of the swallow study, we have no more aspiration.  We couldn't get Gianluca to cooperate much during the appointment, but we got some spoon fulls in with a few different textures.  Everything went down cleanly.  Even juice fed with a spoon.  To me that means the g-tube is coming out.  To the doctors, we'll have to wait and see.

Aside from the couple routine visits to the doctor we haven;t had any hospital visits.  HOWEVER, my husband did land our son in the emergency room.  I can't blame him for worrying but I am thankful for insurance. He ended of calling an ambulance one night thinking Gianluca was really sick.  What he didn't realize is that when Gianluca gets sick he gets very tired early in the evening which to him meant lethargic.  So when I returned home to find the ambulance, as any good mother would, I banged on the door to get in.  I compromised to let them take him to Waukesha.  Three hours and a chest x-ray later, Gianluca had an ear infection.  The silly part was that my husband took him to the pediatrician the day before for a bad diaper rash.  Had the doctor done a quick check-up the visit would've been prevented.  Oh, well.  I just hope I don't have to go through that mess again.

After all the drama, we do have a pretty average day to day with Gianluca.  He is so into cars right now.  He hasn't gotten into the crashing and destruction stage yet.  He is all about the wheels and pulling his rolling toys behind him, rolling cars across the hard floor, playing with the wheels on the stroller, etc.  My mother thought she lost him until she she figured out one of his favorite spots is in our room, behind the curtain, watching the cars go by.  If we walk through the garage or parking lot and a car is moving he is stuck like glue in that spot watching.  I love that he has an interest.

We're still dealing with Gianluca waking up occasionally through the night.  In my idea to give him more freedom and help him sleep I transitioned him to his toddler bed.  I bought these great inflatable rails that fit under the sheet so once I took the one side off the crib he would still have this little hump to keep him from rolling out.  It's done it's job there, however, he still stand up and waits for us to come or he just sits and cries for us.  We've showed him how to crawl over them but I think at night he's just too sleepy.  He ends up in our bed in the morning or out watching sesame street since he'll wake up while I'm getting ready for work. My husband isn't thrilled with needing to be up so early but there are the days Gianluca sleeps until 9am. 

This summer is going to be a great one for us, as a family.  Later this month we are taking our first official family vacation.  We are driving to Savannah and then to Myrtle Beach.  It will be a long journey but I think it will be well worth it.  We are still worried about putting him on a plane with his lungs so we just prefer to avoid it for now.  Llazar's mother is coming for a visit this month.  She will be coming with us on our vacation and staying for the summer.  It will be the first time Gianluca is meeting his Nana.   I can definitely say that this summer is just the beginning of many more busy summers.  It's very rewarding to finally feel "normal".

Too much time has passed now since my last time writing.  I can't even believe that it's been 2 years since we began this journey with Gianluca.  March 5th marked his 2nd birthday.  He weighed in at 18lbs 2oz, approximately 28 inches tall.  Still small but he impresses everyone he runs passed.  Yes, I said runs.  He is on the move and never stops.  Once he began walking he just kept progressing at full speed.  He's crawling up stairs and loving walking up stairs with assistance of a hand.  He thinks he's big enough to walk down, them also.  We are trying to encourage him to turn around and crawl down backwards but to him it's not as fun.  I think it will be a while yet before he's walking up and down stairs on his own.  His legs are still a little short for that.


We've been working on feedings a lot.  Gianluca is doing great.  He eats 3 meals a day now, sometimes four.  We bumped up his feedings so that he talks more in eat feeding.  We realized that we were still just working on the one jar which made sense for his size.  The we realized for him to really get a boost we should make our way to doubling his meal sizes.  Now he eats the equivalent of 2 jars of food, typically a total of 7-8oz.  He does well with it.  He's eating at a stage 2 into stage 3 style baby food consistency.  He will not put anything else in his mouth.  We've tried the toddlers snacks and he just has no interest.  We figured as long as we're able to spoon food the other we're doing pretty well.  


About a little over a month or more ago we began giving him all his meds in his meals.  This way we do not use his feeding tube at all.  We have a visit to the feeding team at Children's Hospital later in March.  I have been requesting to have the tube removed but the overall answer is wait until the feeding team appointment since they are a part of the GI clinic.  At this point if they tell us we need to keep I will need to take matters in my own hands.  I really would hate for the clinic to put me in that position.  


Some of our goals now are to work on potty training and moving over to a sippy cup.  Gianluca is so set with his bottle he will not accept anything else.  It's a challenge that is hard to battle.  We really can't take the bottle away because we need him to still be taking his formula but on the other hand we need him to eventually move away from the bottle as he's getting older. Pick your battles, I guess.  As for potty training we starting about a week ago just getting Gianluca on the potty after he wakes up in the morning and after naps. He doesn't seem to mind.  I usually put him right in front of a mirror while he sits so he can play with the baby.  I think by now he realizes the baby is him.  


An update on Gianluca's O2 needs, we are supposed to still give him O2 at night.  Unfortunately, he's too smart even when he's asleep.  He doesn't keep it on for very long.  He so smart in fact he pulls if off and wakes up crying for our attention.  We were having so many sleepless nights that we reverted back to the playpen being back in our bedroom for him to sleep there.  Many a times he lands in our bed in the early morning shoving us to the edge and nearly right off the bed.  Master of his castle.  


My favorite time with Gianluca is just having him sit and talk to me in my lap.  He will sit content with a toy talking to me about it.  The funny thing is when he sees my cleavage.  It's a story I'm sure he will hate when he's older that I published it on the internet.  When he sees my cleavage he thinks, maybe something is in there so he sticks his finger in.  I'm not exactly sure why he finds it so curious.  


I find it so amazing how he can calm me so simply.  When I'm holding him he's finally gotten to hugging.  He will wrap his tiny arms around my neck and grasp on to my shirt as tight as he can.  His ear down to my shoulder and his legs wrap around me.  It immediately warms me from head to toe.  I don't think there is any better feeling that that tight hug from him.  It not only comforts him but it makes me forget all the tension and stress in my life for that moment.  


Thinking back to 2 years ago when he was just so tiny fighting for his chance to walk and laugh and play.  You'd never know looking at him that he had to fight for this life.  In honor of his 2nd birthday we visited the NICU in Waukesha.  It was so nice to see the couple of nurses that were on duty and to thank them for saving his life so many times.  

Home for the Holidays

Gianluca was home for the holidays.  This holiday season made me nervous wondering if we were going to have an emergency room visit again.  There was one day, even, that I sat holding Gianluca while he was sick.  He was so sleepy and had a fever.  He doesn't normally fall asleep in my arms so that made me worry. I think it will be a while before I can get over the nervous feelings that arise when he's sick.  He's made it through all his little colds and sniffles.  Most of the sniffles now are from all the teeth popping in.  Molars and all. He still refuses to let me brush his teeth.  

The greatest gift we got this Christmas was Gianluca walking.  He is all over the place.  When he hears the creak of the front door he is up off the floor and running to the door to take a walk yelling "bye, bye" behind him.  There is nothing stopping him from traveling far now.  He's started climbing more, too. He can get in and out of his high chair without problems.  My parents are now commenting how much trouble he's getting in.  He can open doors and drawers in the kitchen and has even figured out how to open the dishwasher. No obstacles too difficult.

Gianluca is the typical little boy.  He's now 22 months old, it's been quite a journey. Whenever we go out the comments we get are "he's so small", which he is. At 22 months old he is still wearing 3 month pants. He has moved into 6-9 month onsies.  His outfits now have to be 9 months for length.  We haven't had him weighed in a few weeks but his last weight was 16lbs 8oz. He feels heavier, though his appetite hasn't been great.  He does the majority of his eating at night which isn't great for my own sleeping schedule.  We are seeing the feeding clinic at Children's Hospital in March.  Hopefully we can get him eating more.  It's a struggle to give him anything by spoon.  He is at least moving into more textured foods.  I can use the mill to grind his food rather than blending it fine in the blender.

One of the funny stories that still brings a smile to my face happened at the mall.  I took Gianluca with me to Old Navy.  He was showing off his walking skills all over the store.  He managed to find his way over to a tall, blind little girl, maybe 4 years old.  He grabbed her hand and stood there looking way up to her smiling.  I could see he was reaching in for a kiss but the little girl wasn't sure how to react.  It was the cutest thing. The little girl's mother tried to get her to say hello or do anything but she just stood there, nervous while Gianluca tried to woo her.  I guess I will have my hands full with this kid. Not even 2 and he's already picking up his daddy's habits.  It's amazing how learning how to walk and he no long has inhibitions.  

Chirstmas eve we spent at our cousin's house.  Full house of people that Gianluca doesn't see on a normal basis.  At first he was hesitant and not sure where we were.  After 20 minutes he hit the floor running in every direction.  He was walking all over, walking around people like they weren't there and making his way to the rooms where the girls were playing.  He walked for hours completely fine, saying "bye, bye" as he passed.  It was a total 180 from where he was last Christmas Eve.

So now our days are walking, babbling, and making messes.  I have wished for these days to come and now they have arrived.  We still have battles in front of us with eating and doctor appointments but I don't see us returning to where we were one year ago.  To top of these great progress, yesterday I handed him his bottle and he signed "milk" for me.  That was the first time I saw him make that connection.