Mother's Day

It's been a pretty amazing couple of months.  Sabine is doing so well.  It's still hard to imagine that we have a beautiful, healthy little girl.  She cries and fusses a lot but we love her still.  Her voice is so much louder than Gianluca's ever was.  His cry is still very horse and choked up.  She just cries with a harsh, high pitch that stings you when you are awakened at 3am.  Sabine has a very distinct attitude.  You know when she just is whining for the sake of wanting to nurse on her clock or just snuggle her.  Then she has the cries of tummy aches that are just shreaks of pain.  Gianluca never had those distinct differences.  Now, at 3 years old, he has a very forced, fake cry that is very recognizable.  Makes me giggle a little when he does that but I have to hold it in and stay stern with parent face.  Yes, Gianluca has temper tantrums somewhat and does get time outs. Hard to believe, I know.  

So, yes, Gianluca turned 3 on March 5th.  His birthday was celebrated with his first visit to public school.  Now that he's 3 we are able to get speech therapy from the school system.  It was an enjoyable visit for Gianluca.  A little scary for us.  As he freely walked up the stairs with Miss Amy, the speech therapist, a line of children were making their way down the stairs.  One child came roaring around the corner so fast that had Miss Amy not been there to stop him, he would've knocked Gianluca down the stairs.  That just reinforces my idea that when he goes to preschool and kindergarden it better be on the first floor.  Those other kids just towered over Gianluca's small 34" frame.  Thank goodness it's just 25 minutes, twice a week.  Gianluca would love for it to be everyday.  He wakes up in the morning asking to go see Sue, the former speech therapist that came to our home for 2 years.  And he asks for Jill, the physical therapist that only comes now once a month.  Gianluca is so social he asks everyday to " go see Sue, Jill, Enzo, Ito, Chwa Chwa (Babcia-Grandma), and Dza Dza (Grandpa), ok?".  All with that beautiful, cute voice of his that still brings tears of joy and comfort.

March 21st, Sabine celebrated one month of age and Gianluca, after almost a year of struggling with doctors, finally had his g-tube removed.  I thought the day would never come.  He fussed a lot with the tube before it finally came out.  After it was gone, it fussed with the absence of the tube.  I didn't think he would be phased by it, but he was very sensitive in that area.  Even changing the gauze was a huge todo and took the 2-3 of us to hold him down.  He's small but mighty.  

We had a feeling of such relief when Gianluca's tube was removed.  We really felt like this kid is going to overcome anything and we are free and clear of tubes, wires and hospitals.  Then came April 3rd.  We had a trip planned for Chicago.  Since I was still on maternity leave we thought it would be a great time take a trip as a family. We wanted to take Gianluca to Legoland and the Shedd Aquarium.  A couple days prior Gianluca came down with what we thought was just a cough like I and Llazar had a couple weeks earlier. I kept denying the fact that he could get really sick and I kept telling Llazar, no, we don't need to go to the doctor.  That was me verbalizing what I knew wasn't true in hopes that it could be.  By April 3rd, the morning we were going to leave for Chicago, I was up at 7am.  I pumped a bottle for Sabine as she slept and Llazar slept.  Gianluca still not doing better and a fever still hanging around, it was time to get into urgent care.  I refused to go to emergency.  By 8am when urgent care opened there was already a 75 minute wait.  Thankfully it only took about 15-20 minutes and the nice gentleman who got called before us told us to take his spot because he saw how sick Gianluca looked.  

Well, a chest x-ray looked ok and no ear infection.  They hooked up the pulse ox to see his oxygen saturations. With readings in the 80's they encouraged us to go the Children's Hospital.  There they could test for a virus and give Gianluca faster assistance.  I called Llazar, he got Sabine ready and we all went together to Children's Hospital.  Gianluca fights anything that they doctors try to do.  A blood pressure will never be something they nurses and doctors will retrieve successfully.  However, some of the other pokes he relaxed to, which was a sign he wasn't feeling well.  His fighting turned tired which meant we needed to do something.  He slept as we waiting in the emergency room for pulmonary to come down to see him.  From 10am we waited.  By later in the afternoon, after a visit from his doctor of Pulmonary Hypertension and finally a doctor from Pulmonary.  It was the immediate decision to admit him and medicate.  Heartbreaking.  We went over 2 years without a hospital stay.  I went home to get an overnight bag for Llazar since I had to stay home to nurse Sabine.  By 9pm, they finally had a room for Gianluca.  A very long day.

When I returned in the morning, Gianluca was his normal energetic self that I remember.  He had a great nights, sleep. Llazar, not so much.  He spent the night holding oxygen to his face since Gianluca fought putting on the cannula.  They gave him antibiotics and tested for viruses.  He was doing so well, we took him home that afternoon.  So thankful it was just a one night stay.  A few days later we got a letter with results of his tests and he did get a virus.  One I had never heard of and one the nurses couldn't pronounce.  It I could find the paper I would post the name, but maybe another time.  My only thought, though, was school.  The only change in his life was that he was attended school.  It makes me worried that when he starts going more frequently that he will get sick again and again.  We are taking as many precautions as we can to prevent him from getting sick but I don't know that we can do enough.  For now, once again he is healthy and doing better than ever.  Even eating better, which is a blessing.

So the most recent news we have is that Gianluca will be going in for surgery on May 23rd.  A couple weeks ago we noticed some stains in his shirt where his tube was.  He was leaking from where his tube had been.  That means it never really closed up.  We thought it had because the pressure bandages were clean.  Well, apparently it didn't heal fully and has he plays harder it leaks more.  We had a surgical clinic visit last week and scheduled surgery to have it closed.  I think it could be an outpatient procedure but it depends how it goes.  The last time he had day surgery he was home without problems.  I hope the same this time.  We just want to make sure the until the 23rd we don't develop any infections and that he will continue to eat well.  Ugh, when will it stop.

On a good note, we had Sabine's 2 month doctor's visit.  He had her first round of vaccinations, which always makes me nervous.  She did very well after a loud spout of crying.  Her weight was 8lbs 6oz and 21.5 inches.  Good growth from her birth weight of 6lbs 3oz, and losing weight down to 5lbs 9oz.  She's nearly grown out of newborn clothing.  Only the onsies will fit now. She's too long for any of the newborn sleepers.  She even has those chubby thighs that Gianluca never really had.  Her hair is getting longer and her eyes are staying strong at blue.  We'll see if we have another blue-eyed child.  I'm thinking she could have curly hair like Llazar, which would be so much fun to play with.  I know, I know. She's not a doll. But, come one.  You know all those mommies who love to dress up their babies and do up their hair. I'm not the only one.  

Well, we missed our trip to Chicago so now we are heading to Minneapolis.  I know, not luxury and I'm hoping by the end of May it won't snow again.  I am heading there for a Yoga training and thought it would be great to show Llazar downtown Minneapolis and the weather should be beautiful for some outdoor exploring with the kids.  Gotta get away when we get the opportunity.

Happy Mother's Day to all the mama's out there.  Mine was pretty special because I have my two perfect babies and my perfect family.  We are discussing my dream kitchen that will hopefully come in a home this year.  Can't get any better than that...for now.

No more tube!

Enjoying a walk in he favorite place.

Big swing! 

Success

Amazingly, we finally had a "normal" pregnancy.  No one thought I could do it but we did.  We had our c-section scheduled for 9:30am February 21, 2013.  That brought me to 37 weeks.  I was a little surprised I made it that far without labor pains or any signs of contractions at all.  It all ran very smoothly.  My blood pressure stayed stable throughout the pregnancy except for a couple hiccups when I caught the flu.  Baby's growth was good and she showed signs of good health.  

Thursday, February 21st came and we were up at 6am, well I was up a bit earlier than that due to the excitement.  We were due to be in the hospital by 7:30am.  Mom came by 6am, we were preparing Gianluca's things and he just woke up as we were trying to leave.  That just made my anxious and late.  Oh well.  

In the hospital, things were calm.  So different from our first experience.  It was just watching the clock and waiting.  With Gianluca they prepped me in the room and wheeled me down in a bed.  This time I walked.  I'm guessing non-emergency means no need for a bed?  

When we reached the operating room, we had a view of the NICU.  I peaked to see if I recognized anyone just in case she needed to visit the NICU briefly after birth.  Of course we were praying we could skip that step this time around.  Inside the operating room it was a bit surreal.  Up on the table, while I waited for the anesthesiologist, I watched everyone prepping for surgery.  Emotions began to swell like it was deja vu.  I just made every attempt to think about anything else, but Gianluca's birth.  What didn't help was that the anesthesiologist couldn't get the needle in and ended up trying 4 times.  Between the pain of that and the swelling emotions I couldn't hold it in.  When I think back, it was embarrassing to have the nurses wiping my face and helping me blow my nose.  At the time, though, I was terrified for the worst.  After at least 15-20 minutes of discomfort I was finally able to lay down and go numb.  They don't let your husband in until everything is prepped so he was in the hallway while all this was going on.  

Another deja vu moment occurred once I was laid down and numb from the chest down.  The nausea began.  Last time, Llazar was there to hold the kidney shaped puke tray.  Well, still out in the hall, he missed it.  The supervising anesthesiologist got to hold the tray and clean me up.  Not a graceful moment for me.  Once cleaned up, Llazar finally arrived.  He has great timing.  

I really didn't expect to react like I did during this birth.  I was terribly emotional and worried.  Once we heard the tiny squeal of a cry we were getting excited.  The nurses were ready next to us, the bed in my full view to watch.  10:50am came and my little miracle finally arrived, 6lbs 3oz and 18 inches.  It was so exciting to see her and to hear her cry.  To experience the full birth and process after birth was amazing.  Llazar got right in there. He took pictures, started talking to her and had the biggest smile on his face.  She just cried and cried.  Very healthy set of lungs.  We watched as they cleaned her and weighed her.  Llazar's proud papa moment, he cut the umbilical cord.  This time around, he held her first.  The nurses took our first pictures together.  It was just an amazing moment.

In the recovery room I was able to start nursing immediately.  In fact, they send in a lactation specialist to get you started right away.  All a new experience for us.  She did great.  We watched as they evaluated her. Her temperature was a bit low but after a short time and wrapping her up she eventually warmed up.  I also had a low temp so they were wrapping me in thermal blankets and bubble wrap stuff.  

Eventually we made it back to the room and our little girl got to come with us.  Not far behind were my parents and Gianluca to come meet her.  Gianluca's reaction was a bit as I had expected.  Happy to see a baby at first, but quickly realized she was ours.  His reaction then was, "put it back".  Classic big brother commentary.  

Not much longer

I try to stay connected with other preemie moms.  A question came from another preemie mom wondering how others feel when they see their friends and family having a "normal" pregnancy.  It's an interesting question that comes up in the minds of every new mom that has only experienced a short pregnancy.  The general reaction is jealousy and resentment.  I admit I felt that, too. For quite some time.  I am not sure when it happened, but eventually through the grieving process you find acceptance.  That led me to the silver lining and blessing that only preemie moms get to experience.  We get a window into the miracle.  I was witness to the change that normally exists only within a woman.  

My son was only one pound at birth.  One was still fused, his ears still low and mostly fused, his skin was transparent and very delicate, and he had very little movement that would've translated to the flutters I felt with him.  We watched him develop his features as well start the movements that most mommies know as those kicks in third trimester.   He was always amazing to me, but when I look back I don't see a child struggling, I see a child surviving.  

Now, as Gianluca gets older, we get some criticism on his development.  Regardless of anything he is our child and is amazing.  We feel he has progress passed his age in intelligence.  He may be on the smaller size for height and weight but he is so strong.  The doctor said once we take him off the Sildenafil, heart meds, he would start to get tired and lack some of the energy he had.  He obviously does not know my Gianluca.  If anything he has more energy, it's so difficult to get him to sleep and he will play all day long with anyone willing to sit on the floor with him.  

With the perspective I had on my first pregnancy, I wasn't sure what to expect with my second.  I was excited to finally have the experience of a so-caled "normal" pregnancy.  I think we've done pretty well.  We have made it to 35 weeks, into that mysterious 3rd trimester I have heard so much about.  We are less than 2 weeks away from the birth of our little girl.  I have to say I give a lot of credit to the women out there that go to 40 weeks and beyond.  At 35 weeks, I am ready.  I know every woman is different but the few I have spoken to have the same reaction as me.  The tightness, soreness and feeling tired all the time.  The inevitable waddle that you try to avoid but sneaks it's way out when you walk the aisles of the grocery store.  I watched a woman carry her 4 year old child at 37 weeks pregnant and I just am amazed at what us women think we can handle.  Gianluca still wants to be carried but he's only 23 1/2 lbs.  It's definitely an amazing journey.

So I can now say I have had both pregnancies.  Both my babies have given me gifts that I will cherish.  Our little girl's most updated estimated weight is 5lbs 4oz.  It's official that I can put the preemie clothes up for sale.  She will be close to 7lbs at birth I think.  I still worry about the need for going into the NICU but I have faith that she will be very healthy and we will take her home right away.  

Sailing along

It is so difficult to find the time and energy to get online and write these days.  Gianluca keeps us so busy now.  It's a great feeling when I can say it's not because of doctors appointments. He's just such a busy kid.  He always wants to go for walks and go for rides to find fire trucks.  He's a typical toddler boy.

Some updates on his medical stuff, he has been taken off the Sildenifil, which was the heart med he was on for the hypertension.  They wanted to get him off to see how he does.  The doctor guaranteed us that he would lose energy.  That's a laugh.  Same energy if not more energy.  Gianluca doesn't like to nap, he's up until 10-11pm and up by 9am.  Sometimes when he's just with Daddy he's sleeps in until 10am.  Can't imagine where he gets his bad habits from.  Baby and Daddy are more and more alike each day. Even though we are off the meds, they do anticipate needing to go in to repair the ASD in his heart.  It has come up that there will be the need to go in the old fashion way with open heart surgery because he's too small for other procedures.  We will wait until we have confirmation on that.

Speaking of size, Gianluca has finally reached about 23lbs.  He's growing so big and tall.  He is still in 18 month clothing which seems small but to us he's getting so big.  I watch him on his toys and it's amazing how he fits better in his toddler toys now.  He loves going around on his bike and his car.  He goes monkey crazy on his trampoline now. I am waiting for the day he spins right around the handle bar.  

From all the fun comes his genius.  We were told that with preemies they tend to be behind. In his size he is small for his age.  However, his intelligence is not in question.  We are so proud to hear him count to 10 and almost 20 now.  He sings his ABC's.  We can show him numbers, colors, shapes and letters and he gets all of them.  He points out animals that I can't believe he knows what they are.  He said insect the other day and it just shocked me that he knew that word.  He has such a great memory.  We are working with Birth to 3 now to see if he will qualify for speech within the school district.  I actually think he may now.  He speaks so clearly and according to our current speech therapist he is at appropriate age for his sounds and words.  I guess we will see.  We are working to get him closer to a 3k program by fall because I think he is ready.  During the fall we testing him in a toddler/parent gymnastics class to see his social skills and he did great.  He still loves the girls over the boys.  Probably a good thing he is having a little sister.

I am constantly asked about my pregnancy this time around, for good reason.  Everyone I come in contact with that we knew from Gianluca's pregnancy is so surprised.  I know my family was very worried as to how this pregnancy would go.  Well, it's been going great.  We are now 32 weeks along and our daughter is measuring 4lbs already.  Quite the difference from Gianluca.  I can never compare my two babies but I am thrilled to have experienced the best of both worlds.  I haven't had to visit the Perinatal doctors as much this round.  We finally saw the Perinatal doctor that gave us the news I was being admitted for Gianluca's birth.  He was such a wonderful doctor and very compassionate so when we saw his last week he was so excited to see us so far along.  We talked about the experience of having a "normal pregnancy and I constantly come back to the idea that I will never see Gianluca's pregnancy and birth as anything but that.  It may not be a norm for the average mother, but I was blessed with is pregnancy.  I was able to witness him transform outside the womb.  From his fused ear, closed eyes and fragile skin, it all changed in front of my eyes and I will never forget that.  He blessed me with the experience of seeing the miracle of life.  Only mothers of preemies get to experience such a phenomenon.  That experience made me the mother that I am.

With our daughter we are getting to experience the other pregnancy.  The pregnancy that average women experience.  I felt like I was robbed of a pregnancy with Gianluca and now I get to say I have had both.  Our daughter is giving me the gift of feeling her and bonding closely within.  It's amazing.  I gotta say, though, I don't think I can do this again. The reflux is not the best gift and the beating on my hips aren't always a great feeling.  However, she is telling me that's she's there and thats a comfort I would never trade for anything else.  

Well, I can't say this has been a flawless pregnancy.  My protein levels are back in the risky state so I need to watch for blood clotting.  Not sure how I am supposed to do that but I try to elevate my feet and stay moving as much as possible.  My blood pressure has been very good and I actually think better than with Gianluca.  I can thank Gianluca's joy for that. His happiness keeps me smiling.  We did have one scare just before the new year.  I started to fill sick and began to monitor my blood pressure at home.  Once I got 145/100 I called the doctor and they had me come in to be checked out.  Unfortunately with the holiday no one was in the clinic that day so I ended up seeing my OB in the birthing center.  After a little monitoring they decided to keep me overnight for rest and just to see all was ok.  Everything really was stemming from the start of that nasty flu that was getting passed along. And sure enough when they sent me home the next day the flu really kicked in.  It was miserable and a little like deja vu.  With Gianluca I got a nasty flu as well and that was during the swine flu scare. Following that I got bronchitis. I am not one to get so ill but these pregnancies really leave me weakened so I am finding. 

I can say for sure that these two will keep Llazar and myself running in circles.  Our hopes if that Gianluca embrraces being a big brother.  He does pretty well with me being pregnant but he doesn't understand yet what is coming.  Sundays I spend the majority of the day on the couch because by then my body is exhausted.  He loves to sit and read with me so we find a lot to do on those down days.  We are nearly ready for a little girl.  We would've loved to have Gianluca potty trained by the time she comes but that won't happen.  It's ok, though.  All in his own time.  Now all we need to do is hold out until February 21st.  C-section is scheduled for 37 weeks and I feel like the next 5 weeks will move faster than I can expect.  

One thing I know from both my babies, they have given me such wonderful gifts that I will cherish forever. Just now as I am typing I laugh to look down and see my belly giggle from side to side.  So crazy.  I try to explain it to Llazar since he seems to always miss it and I don't think he will ever get it. For all the terrible reflux I get the giggles and kicks make me laugh so I can't regret anything.

Oh, and no, we are still undecided on names. Girls are harder than boys, so we are finding.

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.

Walking on Sunshine

My updates have been very few lately which makes me a bad blogger.  It's an interesting transition from when I was emotionally required to update daily because there was so much information to remember.  That was the original idea behind documenting my son's progress. I wanted to remember.  There were so many milestones and precious moments that get pushed aside by the more emotional memories.  Lately the memory of my son's 8th day of life has been lingering in my mind.  

The first days in the NICU the doctors say the first 7 days are the the most critical.  I'm not sure I agree with that.  The first 7 days were like walking on a frozen lake on a warm day.  You weren't sure if it was safe but you took the risk anyway. Maybe while you walked on the ice it made you nervous but it still supported you until you made it to solid ground.  Maybe it's a silly metaphor but the anxiety you feel in your body is very similar, or so it was for me.  Gianluca did as most children do in their first 7 days.  It was the 8th day that will remain in my mind for many years to come.  

At 21 months of age, corrected he would be almost 18 months, he amazes us. I think that's why that horrible day stays as a reminder for me to not take any moment with my son for granted.  It's been very difficult the last few months while I've been working full time.  I never had the desire to be a working mom.  Unfortunately, the economy calls me to work.  At least we are blessed with my family and opposite work schedules that Gianluca can stay at home safely during the flu season to receive his home therapy.  

The last month has be an incredible journey of walking for Gianluca.  I've missed a lot of those first steps.  It's when I get home that my husband stops me and sets Gianluca on his feet and shows me what he's done that day.  Emotions of sadness and excitement swell inside me at those moments.  The wonderful feeling is that since I'm not home as much, Gianluca seems to prefer being with me when I'm home.  

Gianluca knows when the front door opens.  Even if we're quiet he can hear the squeak of the hinge and he pauses to try to focus on who is walking through the door.  When he sees it's me he smiles ear to ear and wiggles his way over either crawling or now walking. Once he reaches me he pulls at my pants to have me lift him up.  Interestingly enough, I don't get a welcome home kiss, I get the excited smack on the face. Oh well, I take what I can get.  He then carries on about his day with cute baby murmuring.  It's just amazing.  What would have come of our family if we would have made the other decision on that 8th day to not continue to save him?  We would have missed out on the last 20 months of pure joy.  It will be an ongoing process to release the guilt I still feel from even considering the thought of "pulling the plug".  I can't imagine how parents, who have endured the loss of a child, begin the healing process.

On a happier note, Gianluca is walking now.  We had some rough night with a new molar that popped up this month but the walking has made up for the sleepless nights.  He thinks its a game to walk across the room.  From the couch to the toy box to the ottoman back to the toy box, it goes on and on.  The laughter just fills us full every time he does it.  Now he'll work on getting up from the floor to walking.  Right now he can only find his balance starting out from a standing position maybe from the support of the furniture or from us holding his hand.  First comes the stumbling walk next the running down the hall.  Can't wait!