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!
 

Tiny Feet Giant Smiles: World Prematurity Day

Tiny Feet Giant Smiles: World Prematurity Day: World Prematurity Day Honor the million babies worldwide who died this year because they were born too soon, and the 12 million more...

World Prematurity Day

World Prematurity Day

Honor the million babies worldwide who died this year because they were born too soon, and the 12 million more who struggle to survive. November 17 is World Prematurity Day and when we focus everyone’s attention on the serious problem of premature birth.

“Like” World Prematurity Day on Facebook. Read stories from around the world and share your own. Help spread the word by updating your Facebook status with a message on premature birth. Together we can raise awareness of this serious problem and help more babies start healthy lives.

Walking

Just as he begins to fall, it's a classic "uh oh" face.
What's better than Daddy?  My cell phone.

Sliding fun

How quickly he learned to crawl up the slide and slide sown all on his own.  We only just put this up today.

First Steps

Our life is on the move.  Since our eye assessment I've been assertive in searching for a new eye doctor for Baby GL.  I feel that I have left some of the issues on the back burner while other things have been made to be more important.  I trusted that the doctors were giving me all the information that I needed.  Come to find out that there were complete strangers that new my son's eye diagnosis before I even did.  That's from an appointment we had in the early spring.  Not acceptable.  We need doctors that will take the time to talk to us and not just be a 2 dimensional person on paper.  I'm extremely disappointed in how that system is working, and that's at Children's Hospital.  Well, I just hope the new doctor will give us a plan. I believe that eye sight is just as important as weight gain and feeding issues.  By the way, latest weight is 16lbs 1oz.  We haven't done a height in a while so I'll have to do that for next post.

Speaking of feeding issues, we still continue to struggle with Baby GL's appetite.  He immediately swings his head to the side and pierces his lips closed when he sees food.  Once we get the first bite in he seems to get the idea, but he definitely has no interested in it.  A bottle isn't as bad.  He'll snack on his bottle all day.  Especially in the evening and before bedtime.  I have a feeling that Baby GL will have some issues with food when he's older just with he way we have to force it in him.  His G-tube will probably be with him for a while.  Along with that will be his O2 at night and we are being pressured about his medication.  One in particular, the Viagra.  We stopped the dosage due to him vomiting a lot and have slowly been introducing it again.  We just stared giving the 3rd dose now after being pressured by the Pulmonary Hypertension team.  I know they mean well, but they haven't a clue what it is to live with a vomiting issues.  It's become so much part of our feeding ritual.  We have the routine down on how to make the smallest mess.  Not a habit I was dreaming about when I was thinking about being a parent.


On the flip side we have been enjoying the Autumn season.  My sister and I took the kids for a quick trip to the pumpkin farm.  My older nephew ran around like he just ate a pound of candy.  At 2 he's not brave enough to go up onto the play set and down the slide alone.  He really didn't care about the pumpkins. Baby GL wasn't too thrilled, either.  I think he was more upset that I woke him from a nap to go.  I'll post some picks with the pumpkins.  You'll see how little interest he has in being there.  The newest member, my baby nephew, his joy came from crying.  This kid has a set of lungs on him.  I really feel quite blessed that my son has more of a horse cry. I will take that any day over the piercing screams.  My brother-in-law even agreed with that.

Babcia, Baby GL and I just went to the apple orchard for picking.  I always look forward to that.  He went with us last year but he was too small to do anything but be in his stroller.  This time around he was not happy sticking it out in the stroller.  He actually sat on the grass while we buried ourselves in the apple trees. He was having fun playing with the stroller straps and I gave him an apple to "chew" on.  He has 4 teeth now so he gets those teeth marks in the apple, then he throws it.  He's got the best throw I've ever seen from a baby.  With these outdoor adventures comes dressing for the weather.  We are back to the hat battle. How do you get these kids to keep their hats on?  I think we'll be trying hat and hood so it's harder to pull off.  I've bought more leg warmers, too.  I LOVE baby leg warmers.  Besides being cute they are so helpful as an extra layer on the legs. And if he gets to warm leg warmers, so do I.  Gotta love the fashion come backs.


So, now we get to the biggest news.  Baby GL took his first steps yesterday.  It's bitter sweet because I wasn't there to see the first steps.  My husband made sure it was the first thing I saw when I got home form work, though.  It's only a few steps then a tumble, but it's such great progress.  Baby GL is on the move now.  He is not afraid to crawl anywhere, pull up on anything, and walk across anything that will hold him.  One of my latest Craigslist finds is a kids trampoline.  It's great for toddlers.  Baby GL is a little small for it but he doesn't let that get in his way.  I like to think the trampoline is what got him to take those first steps.  He will freely crawl over to it, limb on to it, which is great because it's easily set higher than his waist.  Once he's up he goes to the handle and walks his way up to standing to jump.  The handle is taller than he his, but still within reaching distance.  It's so cute to watch him jump.  He gets the biggest smile on his face.  For that face I will turn my whole living room into a playroom.


Since I've been writing this I've been asking my son's name just for personal reasons, but I feel so proud that I want to share him with the world.  We battle with a name at the beginning but my heart was warmed when we named him Gianluca Valentin.  He is our strong and rave little man that is proving to the world that the doctors can be wrong.  He survived and is growing to be a perfect, playful little boy.

Eye assessment

Today, Baby GL is officially 19 months old.  It' funny to count the months as they go by.  I'm trying to remember what has happened over the last month and it's hard to remember.  We've been adjusting to a new schedule with me working full-time again.  I get the evenings while my husband takes the mornings.  It's actually been nice getting my husband to try to adjust to Baby GL's needs.  He has to be the one to make sure he gets his meals and naps and even therapy.  It can really get complicated.  I have to say he's doing a pretty good job.  He's even made it to the doctor's appointments.


We are still battling the "failure to thrive" issue.  We've found that instead of driving ourselves crazy trying to stuff Baby Gl, we're really following his lead.  We've always done that, but know we're following a little more strict diet.  I've made attempts to make baby food and it's been pretty successful.  By successful, I mean, he eats it.  He's still particular on texture, but I think he's warming up to trying different things.  Our consistencies have been fatty yogurt and giving him as much formula as he'll drink.  The formula we're on is very high calorie so if he's drinking well through the day then we should get some great weight on him. The last weight taken was already a couple weeks back but he did finally break 16lbs.  He was maybe 16.4lbs.  We have a couple appointments next week so we'll get an updated weight and I'm hoping for a height, too.


The few things that are memorable for me this month actually include Baby GL having a cold.  He had the nastiest part of his cold during a weekend, which was good because he was miserable.  I was worried that with his congestion he would have breathing issues.  His breathing issues included lots of crying.  He would fuss every couple hours so I decided just to have him come sleep in our bed until my husband came home from work.  He still woke up early the next day.  We were good for nearly a week when we had another episode of late night crying.  It turned into a slumber party in mommy and daddy's bed.  He wasn't settling down by himself so I brought him in bed.  It's funny how sleeping with a baby is like sleeping with a dog.  First, he crawls to the top of the bed.  Not happy up there he maneuver's his way towards the bottom of the bed.  Flip flop, he finally finds a spot to lay, while mommy and daddy hang on tight the edge of the bed.  Double feature the following night.


So today we finally had our vision assessment that has been rescheduled twice.  It was really informative.  We had someone from Wisconsin Center for the Blind come out and actually assess how Baby GL sees.  We know he can see, but it was hard to know what he sees.  His official sight diagnosis from his eye doctor is near sighted in one eye and far sighted in the other.  He still has issues with nystagmus, which means his eyes dont' settle, they have a slight giggle when he's looking around. This is well known in preemies that had ROP.  One thing that was brought to light today was how he focuses.  I never to notice to Baby GL turning his head slightly to the left when he was looking at something.  In order to focus he needs to find that nul point.  It's a point where he is able to find focus between both eyes.  I've noticed the tilt in his head before but I never realized that it was Baby GL compensating for his vision.  We got some great tips on how to stimulate him.  We were even educated on what type of sunglasses to get him.  It was one assessment that was actually very educational for us.  


Baby GL is continuing to grow at an amazing pace.  Soon I will be writing about how he's walking.  Right now I'm just enjoying our small accomplishments.  I'm not in a hurry to have him walking.  He does get up to his walker now and cruises across the room with ease so I think walking is just around the corner.  I think it's important for us to live for the moment.  Even the sleepless night are memorable for me so Id hate to forget them.

Failure to Thrive

I realize I left everyone hanging not updating since our hospital visit.  Baby GL came home as expected on the Friday before Labor Day weekend.  He gained some weight during his stay which seemed to satisfy the doctors.  I still feel that the hospital stay was unnecessary.  There were other ways to accomplish what they needed without sticking my son is a small hospital room with no where go to go.  Had they thought it through and known about the MRSA situation I can only hope they wouldn't have done that to him.  Now we have to go through another round of three negative results to not be put in isolation if every there is another hospital visit.  We thought we had two negatives but then he ended up positive this last time around.  Just the icing on the cake, I guess.  


Once Baby GL was home he seemed to adjust back to his schedule.  We are still experiencing daily vomiting fits.  Something we are experimenting with is taking him off the viagra meds we started for his heart a few weeks back.  I'm wondering if that adds some sensitivity to his stomach.  Baby GL will vomit just seeing that spoon coming near him.  I really don't think that's a natural reaction. The goal coming out of the hospital was to get Baby GL to eat 5 jars of food or yogurt with a teaspoon of oil added to each, 16 ounces of Compleat Pediatric, as well as 4 ounces of whole milk.  So far we've only been successful with 3 jars of food or yogurt and maybe the full amount of liquids.  He's just so small you hate to stuff him because it will just come right back up.  It's a constant struggle.


On the contrary to Baby GL's weigh issues, his energy is as excitable as can be.  He resists naps, he jumps and crawls around at any given moment and will not sit still at any point during the day.  Even when he sleeps he manages to roll around do much he wraps the oxygen cord around him so many times it comes off the oxygen tank.  I've woken up to the whooshing sound coming from the tank after he's pulled it off.  Usually that would be a sign that it's time to come off the oxygen.  The doctors don't seem to see it that way.  They actually thought adding one more cord, a feeding pump, was a great decision.  Sure, why not.  Let's never get sleep because we'll be up all night unwrapping our son.


I still have a lot of hostility towards the doctors after this last hospital stay.  The doctors diagnosed Baby Gl as "failure to thrive".  I've heard other babies being diagnosed as such.  However, when you hear that about your own child you start to question everything.  Most of the time I just think about how that should really be called something else.  If my son was "failing to thrive" why would he be crawling around, giggling, walking, rolling, talking, etc.  That to me is the definition of thriving.  He's alive, he's healthy and very happy.  Yes, he's small.  So let's plan the diet and stop defining it.  


Aside from all the crazy stuff we've actually found a lot of great times this week.  I took Baby GL's little baby pool out for him to play in.  He loves to play in the bath now, splashing around, standing up against the edge of the tub then sitting, then up again.  I figured the pool would be just as great. It was fun, but not the same effect.  We've been trying to play more with Baby GL's cousins and to take him around other people.  He's been experiencing a lot of separation anxiety.  It's not good when he doesn't even recognize his own grandparents.  


It's been another week of adjustments, to say the least.  We've begun t realize that this is how our life will continue.  I have no fears that Baby L won't catch up as he gets older.  The comical thing is that my 2 month old nephew wears the same size clothing as Baby GL, who is now 18 months old.  Well, so many parents wish their babies would stay babies longer.  I guess we get to experience that in real life.

One more day

We are expecting to stay one more night in the hospital.  It's been a frustrating battle with the doctors and nutritionist.  They want to give Baby GL an over abundance of extra calories to bump his growth.  For a child as active as him, it does make sense.  However, since we've been stuck in a small hospital room, Baby GL has had no interest to drink from a bottle.  Really getting him to take anything has been terribly difficult because he just can't be the same active child when there's no room to play.  The MRSA swab he had done ended up positive, which just means we have to start again to get the 3 negative swabs before he would be out of isolation in the even he would be hospitalized again.  The good news is that they plan to let us come home tomorrow.


Baby GL's new diet will now consist of 5 solid baby food feedings with one tsp of oil added to the baby food to boost calories.  We then will keep the 2 cans of Compleat Nutrition and 4 ounces of whole milk.  It's a challenge to be on this diet in the hospital.  It's just unrealistic in this setting.  I think that if they really wanted an accurate judgement of how he uses his calories and how much he can tolerate they should've had a nurse come to our home for observation.  We had a home nurse when Baby GL first came home.  I'm sure it was possible to do.  The only thing was that they wanted lab work done to see the function of the kidneys, liver, etc. to make sure the diet wasn't harming his body.  It really is a high calorie count for the average child.  


I could be one of those very optimistic parents and say how wonderful it has been learning about my son's body and feeding habits.  however, it's difficult to be optimistic when you have to take your son out of his home, away from what he's used to, and start poking at him every couple hours.  Since Baby GL was born I have learned a tremendous amount about how to give him the best care and how to read his signs.  I consider myself the expert being his mother.  I just don't understand why doctors can't trust us moms when we  tell them something will not work for our children.  I'm lucky we got the diet we did.  The nurse was suggesting we tube feed while he sits in a high chair.  Is there a 17 month old child out there that sits still in his high chair?  Not my son.  She also suggested having Baby GL wear a backpack with a pump to pump formula in through his tube.  The same pump we used when he was much younger.  The pump backpack is half his size.  There is no possible was he would continue a normal life with that.  I really don't know how these people can make recommendations until they actually experience the care needed 24 hours a day.  Taking care and following the directions given from the doctor on patients for maybe an 8 hour shift is completely different from the care you give your own child.  It's just a frustrating scenario.  


Once again, the good news is that tomorrow our lives will go back to normal and we can get out baby home.  That is really where he needs to be.

Visit 3

One of the RNs at Waukesha NICU told me that on average these babies have 3 visits back to the hospital after going home.  Well, let's hope this is visit number 3 and the last one.  We had an appointment with Cardiology on Monday just to check in, get Baby Gl's weight and see how he was doing with his new feeding schedule.  Unfortunately, his weight was down so now they want to intervene.  The requested to admit Baby Gl into the hospital for a few days for observation to see if we could resolve his weight issues.  It was very emotion for my husband to think about our son going back into the hospital.  I think I handled it better because I knew it wasn't a trip starting with a call to 911.  The goal is just to observe and be able to bring him home before the weekend.


Yesterday, by about noon, we admitted Baby Gl in to Children's Hospital.  I think we've been spoiled in the past getting put into the new wing of the hospital so now that we have a room in the old wing we're a little disappointed.  I shouldn't complain.  It will just mean we want to come home that much sooner.  


Baby Gl is completely aware of his surroundings.  He knows he not at home and he knows these are not Mom and Dad coming in to check on him.  We've had to stay close by because he will just cry when we're not around.  His first day settling in was hard for him.  We went for dinner during his nap and of course didn't make it back before he woke up.  We found him in the arms of a care volunteer just crying away, which is usually what happens when we're not around.  It's heartbreaking, but it's difficult to be there ever second.  To put him down for a nap we have to hide behind the separation curtain and just wait.  He wines and wiggles around for quite awhile before he eventually settles in.  


Neither of us spent the night in the hospital.  We got Baby Gl to sleep and went home to sleep.  I made it back to the hospital before he work up, however, he had been awakens a few times earlier from labs coming through and the nurses fussing.  He even vomited during the night right at the last bit of his tube feeding with the nurse.  That wasn't anything new for us.  We had found that tube feeding has to be minimal or he won't tolerate any longer.  It's a battle because he needs to eat but when he doesn't take enough by bottle we have to get it in somewhere.


So today the regime is to get 24 ounces of this Compleat Pediatric rather than the 16 we've been aiming for.  I don't know that we'll do it by mouth, but we'll hope.  Everything else will remain the same.  The nurses and nutrition are following closely.  His weight as of Monday was 6.76 kilos, 14.87lbs.  Today the nurse weighed him and he was up at 6.93 kilos, 15.25lbs.  We know he can gain weight it's just keeping the weight on and figuring what diet works well for him.  The doctor came through with a theory that maybe he's constipated which would cause him not to eat.  Well, I can say I agree since I changed 3 dirty diapers in 2 hours already today.  I guess we'll just humor him and let him rule constipation out on his own.


The one thing making us feel very trapped here is that Baby Gl needs to be under isolation.  Back in January, when he was hospitalized, he tested positive for MRSA.  I guess it's highly contagious and he needs 3 negative test results before they will let him out of isolation when he's hospitalized.  He had 1 negative result back during his surgery in June and now they are doing a 2nd test.  With him in isolation we have to stay in the room.  We've had to bring toys in and let him explore the hospital room only.  He's surprisingly fine with it.  We were given a bouncer today for him to play in.  He doesn't play with one at him now but he likes to play and walk around the outside of them so I think it will entertain him.  It's only a few days.  We can tolerate a few days.  Hopefully by the time they release him they will have the answers we all need to get Baby Gl growing.

Hoping for Growth

It has been so long since I last updated.  Our month has been terribly busy.  Baby Gl continues to keep us on our toes. He made it through hi sear infection and things have gone pretty much back to normal.  We've been jumping around over this issue on his growth.  It's an interesting topic.  When you see Baby GL he looks like a very health little boy.  Very active crawling around, walking along furniture, puling himself up on anything he can and even crawling up stairs now.  You would think nothing was wrong.  Well, the clinic appointments just don't get better.


A couple weeks ago Baby Gl had an echo performed to look at his ASD, hole in his heart.  They were trying to measure a general amount of how much pressure is being put on his heart.  The Pulmonary Hypertension specialist believes there's enough to medicate and to keep the O2.  The O2 only needs to be on at night, really for the reason than unless Baby Gl wears his own O2 backpack there's no way to keep it on.  Another change was to add another medication which is basically Viagra.  That took some convincing from the doctor with the insurance company to approve that medicine.  To my understanding Viagra helps to lower blood pressure and do other therapy for the heart.  However, the side effects are still as we all know Viagra to be.  He hasn't seemed to change his mood on the new med.  I have noticed him kissing a lot more, usually girls.


So with that same appointment we were advised to speak with the nutritionist that works with the cardiology department.  We know that the Pediasure was never something we were successful with.  The nutritionist actually put together a whole new diet based on how we were already feeding Baby GL.  In place of 24 ounces of Pediasure we are now trying Compleat Pediatric.  It is made of real meat and vegetables dehydrated and processed in a liquid form.  At first I wasn't thrilled because the ingredients still contain corn and soy.  At this point those are two ingredients I'd like to keep my son off of until later in life.  Since we have no other choice we have given it a try and the side effects are much better compared to Pediasure.  His diet now consists of 16 ounces of this new formula, 4 ounces of Organic whole milk, 3 full meals of baby food with the addition of 1tsp of olive oil to eat meal for extra calories, as well as any other fluids like juice or water he he's needing it.  We've done well, except he will get full every once in a while, which he shows up with vomiting his whole meal.  We just can't win. It's a process.


It's been a very long time, but we had a whole family outing this weekend.  On Sunday the three of us, my sister's whole family, and my parents all went to the zoo.  It was KidsReach Foundation Day so the ticket sales went for a good cause.  It was a perfect day for the zoo.  I don't think Baby Gl really knew where we were, but we'll have pictures to show him when he's older.  It was just so wonderful to have a good day as a family.  We couldn't escape the daily challenges of feeding Baby Gl, but for the most of the day he was thrilled to be with out.  


It's amazing to see how much Baby Gl has progressed even over these last few weeks.  He moves, without hesitation, all over our home.  Now he's crawling up stairs, in and out of rooms, and climbing up whatever he can find.  His verbalizations have gotten so much better an clearer.  He's testing new sounds and getting louder.  He knows his name and whole Mom and Dad are and even know what a ball is and where it is in the room.  He's even begun to get incredible needy.  When I or my husband leave him, or just leave a room sometimes he begins to cry.  I'm not sure if it's because I've taken on more work.  Even if he goes with my mother he cries.  I'm hoping it's a stage.  It could just be his new tooth he has popping out on top that's causing him grief.  Either way, it's nice to feel so loved and needed.  It just breaks my heart to hear him cry.