Sleeping in...

6 weeks old!

Our Adelina is growing!  She weighs 9 lbs 4 ounces still fits newborn clothes the best.  Loves to be held and patted.  She sleeps through the night and has since she's been home with occasional quick pats(benefits of the feeding tube).  She sleeps somewhere from 9-11 until 8 am.  Our little Addy has mixed feelings about her pacifier, if she is awake it's great, if she just woke up it is offensive.  Addy loves to make eye contact and watches mommy closely.  We LOVE her sweet little voice with her occasional cooing.  She has just started smiling, yay!  Adelina is getting lots and lots of attention from her adoring fans aka siblings, parents, grandparents and aunt.  We love you Adelina!

Daddy

As I've probably already written, we had to decide where to have Adelina's care.  Houston has a wonderful children's hospital but is four hours from home and no family.  We chose to come to Utah for childcare and family help.  It was a really tough decision because we knew that my husband would only be able to come for visits.  Because of his work schedule and the cost he could fly out every two weeks but sometimes it would be much longer.  After being gone for two and half weeks we were able to be together for the first time as a family over Thanksgiving.  It was so nice!  The kids didn't want him out of their sight and neither did I.  He had to return to Texas on Sunday and I was torn as I always am when he leaves again.  We are so blessed that he is a professor as he has a long period over Christmas where he can work from home.  Can't wait to see him again!

Happy Day!

New experiences

As we prepared for Adelina's arrival I hoped that she would get to experience her first Thanksgiving.  She slept through the festivities but it warmed my heart to have her be part of our family tradition.  This is the first time in years we have been in Utah for Thanksgiving since the break has never been long enough to warrant flying our little family out.  My little ones didn't break from tradition, they still only ate the jello and rolls :)

I come from a large family so "limiting visitors" is a tricky area.  I'm the third of eleven.  Everyone lives nearby and we love big gatherings.  We only had one child over and the rest were adults.  It worked out better than I anticipated and everyone was respectful of our need to keep her healthy.

Today I had to change Adelina's feeding tube for the first time.  She woke up and promptly threw up then a few minutes later was wretching so violently that I had to pull her feeding tube.  I'd assumed that she would pull it out but it turned out that I did.  My mom had watched the video at the hospital so she was a great coach, Addy didn't even cry.  If she had cried it would have been so much harder.

An hour later I was putting her down in her bed and the tape from her feeding tube caught on my shirt.  Yep, you guessed it, I pulled it out again and placed it again, it left her poor little face all red.  I'm wondering how other moms keep it from constantly being pulled on.

Love this girl!

Pediatrician

Adelina had her 1st appointment with the pediatrician.  She will meet with the pediatrician on the weeks that we don't meet with the clinic or the cardiologist.  It was certainly a new experience.  We call when we are in the parking lot, they let us in the back door to the 1st room which has been completely sanitized.  The nurses were extra careful wearing masks, just in case.  Adelina is now 8lbs 10 ounces and is just starting to fit into 0-3 month clothes.  Unfortunately while being examined she threw up for the third time in one morning.  Many kids can't handle the multivitamin so we are going to stop giving it to her and see if anything changes.  It's scary for her to throw up because she doesn't swallow well.  The first time she threw up this morning I was in the kitchen having breakfast and didn't catch it right away.  It's tricky to leave her unattended, even when she's sleeping.

Adelina has started to wake up with a big smile, I'm still trying to catch it on my camera, it just makes my day.  The appointment this morning must have been really exhausting because she slept for seven hours straight when we got home.

We had a bit of a mixed blessing happen while I was a hospital with Addy.  My two year old had tubes put in just after Christmas last year.  Those tubes fell out about a month ago.  In that time I didn't hear her speak very much but came home and found her speech really muddled, she's usually really articulate with a large vocabulary.  I'm not sure I would have noticed if I'd been with her every day.  So, we took her in at the same time as Addy.  We will see an ENT shortly but my guess is she'll need tubes again.

Peaceful Sabbath

enjoying Adelina

1st clinic appointment

Our first appointment was at nine and the second at eleven with speech therapy.  That meant that we had to leave at seven and that I had to pump between appointments. I then had to replace her feeding bag right before the second appointment.  I got up at six but was so tired I could barely function.  I learned that an hour is not enough time to get us out the door with all the extra stuff Addy needs.

We arrived with a few minutes to spare, thank goodness.  However, they had no appointments scheduled for us.  Not to worry, they can get us in at ten...  Now, I had pumped at 6:30 which meant that I had to pump again before the appointment so they showed us a lactation room, hmmm, turns out the rooms on this side of the hospital have no pumps.  Luckily, my mom was with us, I hurried up a flight of stairs, across a skybridge, down a flight of stairs, across the hospital and up the elevator to the fourth floor.  When I returned I had missed her chest x-ray(where she threw up), her weight and they were in the middle of an EKG.  I do not like missing pieces of her appointment.

Adelina was a trooper and was covered in warmed blankets when I got there.  Now I had a problem.  It was ten but she still had an hour of milk and new milk is only good out of refrigeration for four hours(when we fill her bag it's good for four hours).  This would have been fine if I had pumped at eleven so I did the next best thing and just replaced her whole bag an hour early.  On a side note it takes quite a bit of math to figure out how to make just one bags worth instead of making a 24 hour batch.

Our nurse practitioner Bonnie came in and then we met with Dr Truong.  Adelina is looking great!!!  They decided to increase the amount of milk she was getting from 21 ml/hr to 22 today and 23 tomorrow.  Adelina has been throwing up so we are adding zantac to her meds.  I hope it works because having her throw up is so sad.

We turned up the pump, discussed a few things and then met with our social worker.  Next we headed to speech therapy.  By this point my little one had been awake for three hours.  So of course, she slept through speech therapy..  Grandma tried washing her hair to wake her up, she didn't even bother to open her eyes.  We had a good chat with our nutritionist and speech therapist and then were connected with early intervention.

We were directed to the pharmacy to pick up her zantac but first I had to pump... again.  We were told it would be about twenty minutes so we quickly grabbed lunch.  Our prescription took a little longer but we were finally headed out the door just after 1:30(remember we got there at 9).  Her feeding pump alarmed and because they had increased her feeds it had run out 30 minutes early.  We hurried to the car and with some craziness were able to mix a new bottle but didn't have any idea how to account for the new amount in a one time bottle(we asked the nurse when she changed it and she turned down figuring it out).  Now, I had pumped at noon so the clock was ticking.  We only had an hour and a half to get home so we briefly stopped to visit Adelina's great grandpa and my aunt and uncle and made it home a little late.  Now we know that these appointment's take ALL day.  In two weeks we do it again.  Next week we only have to go to the pediatrician :)

warming up after 1st bath

We're one month old!!!

I'm so excited that Adelina is one month old today.  She has been through so much in such a short amount of time and she really looks great.  She still wears size newborn but hit 8 lbs this morning.  She has averaged a 50 gram a day weight gain since being home.  Addy LOVES to be held, she sleeps peacefully in my arms right until I set her down then her little eyes pop right back open.  She also loves soft textures and being toasty warm.  You'll notice in many pictures she's burrowed into her blankets, she does that all on her own.  We tried on a bunch of her bows today and most of them are still too big :)

Illness and Little Miss Afton

Tonight for the second time my mom took my five year old Afton to urgent care.  She has had three stomach bugs in less than three weeks.  She hasn't acted like any of my kids ever have with a stomach flu and three times?  It's so hard.  I can't go comfort her because I can't risk getting Addy sick.  Each time we've come to visit she has been sick.  My heart breaks that I can't be with all my kids when they need me.  I'm SO grateful for all the family members that have taken care of them when I can't.  They will forever have a strong bond with their aunts, uncles, cousins and grandparents.

The learning curve

I was able to get almost six hours of sleep last night and then slept when Adelina slept today.  I still haven't figured out how to get the feedings to actually run out at four hours, it just now ran out now almost forty five minutes early and it takes time to heat up milk and get it going again...boo.

This morning I gave Addy her meds in her feeding tube, at the right time and the right amounts.  I woke up two hours later to find her soaked with milk.  Yep, when I was unclamping the tube I didn't unclamp it all the way so the pressure built up and disconnected the tube.  I was so sad.  On the bright side she slept right through swimming in milk, I just love how content she is.  The nurse practitioner called to check up on us right after this happened.  She was so nice, she gave me a little pep talk before getting on with her day.  Thank goodness for tender mercies and for all the wonderful people we have met through Addy's special heart.

Home Sweet Home

Getting settled has proved to be a four man job.  My parents and my sister and I have been running around getting everything organized for little Addy.  Things I've learned so far... one page has her meds listed in Micro-grams and milligrams, the other is listed in milliliters and no they are not the same.  Did you know that your medicine bottle gives the solution on it?   Does it matter?  Yes, I gave my baby the wrong dose on the very first try, I was so frustrated.  I checked and re-checked and still gave the wrong amount(luckily it was too little, not too much).

We are on the schedule that the hospital set for every four hours to fill her feeding bag for continuous feeds.  The feeding tube and the pumping are on seemingly opposite schedules so I am really, really, really tired but at least I know how to fix it in the near future.

Addy is a really content baby.  She was rarely awake for more than 45 minutes a day at the hospital.  Apparently being home is way more interesting, she finally fell asleep just before 1a.m. last night.  She wasn't my only reason for being awake though.  The feeding bag is supposed to hold 4 hours worth of milk but if you don't catch it in time it puts air through her tube.  I set an alarm but twenty minutes early it ran out and filled with air.  I then tried clearing the tube or priming it but we had some stubborn bubbles, it took me almost an hour to get it to advance and clear it out.

On the bright side, I've seen our little warriors eyes more than ever.  We went outside and enjoyed the unseasonably warm November, something that I wished for her while in the hospital.  I get to dress and change her(yes, I really did miss being able to change her).  I've been enjoying all the little moments and love letting her sleep and holding her without being tethered to poles(I wear a backpack with her feeding pump).

Home

We were discharged at around noon but didn't actually break away until four.  I had done all the training on Thursday but didn't take into account the pump(twice), the frozen milk(I have pictures and it's insane) and lunch.  It all added up but we did get on the road and thankfully traffic was light.

Speech Therapy:  She gets pacifier sucks with a little milk mixed with banana puree(five sucks three times a day).  She looked like she was doing amazing, we kept dipping her pacifier with a drop on it and giving it back .  We then pulled out her pacifier and she had skillfully pushed all the "tastes" out of her mouth and down her cheek,  I don't think she had swallowed anything, at least she knows what she wants :)

80 grams

We gained!!!  We were told just 60 grams and we could go home.  Nope!!!  Luckily, I wasn't too heartbroken.  I roomed in for 24 hours, which was nothing like it would really be at home.  No one comes in and wakes your baby over and over and over again.  I would get up and take care of her feeding tube and medicines and then just as I was getting back to sleep the nurses would come in and do vitals, wake her up and then leave.  I would then spend the next several minutes getting her back down for the night.  Babies get bathed at 4:30 in the morning and weighed, they pushed it back to 5:30 but in the end I got no more than an hour and a half of sleep at a time.  I really am looking forward to taking her home.

Heart warrior

with her very own zipper.  Yes, my heart broke a little when I saw her scar(they removed the steri-strips early in the morning).  I'm so proud of my little heart warrior.

Car seat test

Adelina passed her car seat test.  We took her out at 50 minutes, the last 10 were more than she could handle.  The sweet nurses found her something to wear to make it a little more comfortable.

We failed...

and we're still happy about it :)  Addy did a great job but aspirated about half way through.  The feeding was pushed even though she was trying to stop it, they think she was protecting her airway.  In the end it's easy to see that she just needs more time.

The Great news is that we are going home!!!  Now she just needs to grow and gain weight before her next surgery.  I spent all day getting trained on oxygen, the pulse ox and her feeding pump.  I have placed a feeding tube but need to try it again(it didn't go so well the first time).  Tomorrow I spend 24 hours doing all her care.  We also have a car seat test, to see if she can handle the drive home without oxygen.  Speech therapy will teach me to attempt feeding her a thicker milk so she can practice swallowing.  The list of things to do before we leave goes on and on but we are checking things off.  Most of what we are left with is teaching me.

I'm so excited and surprisingly feeling pretty calm about having her home.

Just can't get enough of this little one

Swallow study

Addy once again has surprised us.  She is sucking on a pacifier.  It may not seem like a big deal but for heart kiddos it is and it means they are ready to try milk by mouth.  She was supposed to go for a swallow study today but, no spots were available so, tomorrow we will find out if she can take food orally.  If she fails, she can come home sooner.  If she passes we will try to teach her to eat and hope that she continues to gain weight.

We gained again...

We managed to catch up to our birth weight by gaining another 70 grams!!!

25 grams

25 grams is so little to us but so much to our Addy.  She needs to gain 25-35 grams a day for three days before going home(of course she has to continue this gain or we just come right back).  Yesterday they increased her calories and decreased her diuretics.  It did the trick, she gained 80 grams between yesterday morning and this morning.  She's sleeping soundly and we can already see the difference in her face.

We gained...

80 grams.  All it took was a couple more calories an hour.  Her face even looks a little more full :)

Still haven't gained weight but so sweet!

Weight gain

It looks like we've hit the normal dilemma that comes to babies with single ventricles.  We are not gaining weight.  We had a nurse today that was so sweet but not really concerned about feeds being on time.  It looks like we will not have that same nurse again, it's too stressful to leave and wonder if our baby is getting fed.

On the floor

We were moved yesterday around 1pm.  Our baby Addy needed oxygen off and on and is now on room air!  We have had the chance to try out a bouncer, a swing and a mobile.  She seems a fan of the mobile and the bouncer but only lasted for five minutes in the swing.  She still occasionally needs medicine for pain and a few other things but for the most part just has her feeding tube of which she continuously gets 20ccs an hour.  We have a checklist of things to learn before going home but we can see the progress she is already making.  Our Addy has been such a good sport and spends a lot of time being held, we just can't get enough of our little one :)

Cousins

Our baby Addy has two cousins almost her age, one is only two days younger.  They came to visit so of course we needed a picture ;)

Moving...

We are moving to the floor, really this time they mean it.  We are just waiting for a bed which could be this morning or late this afternoon.  They took out her PICC line and put in a regular IV.  She's enjoying the freedom of moving her legs.  She has been on room air this morning so we may go to the floor without oxygen.  It was kind of funny as she was on .03 liters of oxygen, one of the nurses commented that they hadn't seen anyone with such a low amount.  We have a bunch of cute pictures to post but they aren't going through, hopefully they will work today.