Happy New Year!

We arrived home last night in time for the celebrations.  So glad to be back with family.  Grateful for the Ronald McDonald House and for Heather for great company and baby-caring skills.

I'm sitting here at 12:15 a.m. listening to fireworks and silently laughing.  The fog outside is think and visibility is really low, the fireworks have been going or at least an hour and you can't see a thing, lol.

Ups and downs

Adelina seems to be feeling better, now we are just working on getting her on the right dose of blood pressure medicine, her diastolic is still higher than mine.  Her oxygen needs are still fluctuating a little too much and we are changing her feeds (more volume, less formula).  We hope to be home by Sunday but have learned not to expect too much.  Our Addy is really such a trooper.  She has thrown up a lot and put up with many blanket changes and baths.  She loves having her hair washed and still loves textures, she burrows her head into soft fabrics.  They brought in a swing and mobile and even tried out a few hand held toys.  We put a pacifier in her hand and she actually put it in her mouth the first time, the second time she got her fist but didn't seem at all disappointed :)  Adelina loves to smile and we love to get her to smile.

Because of Adelina's size she is outgrowing her shunt, which is normal, and is needing more intervention.  Her surgeon,Dr Eckhauser, is thinking that the next surgery will be scheduled around her three month mark instead of later.  We had hoped to make it as long as possible but it looks like sooner rather than later would be better.  She will be three months old on the 18th of January.

Yesterday they decided that because she throws up a lot it must be that she has a milk protein allergy.  I feel for anyone that can not have dairy products.  I went for one day without dairy, it's in everything (spaghetti sauce? yep!).  This morning we decided that that was not the problem, thank goodness.  Addy took thickened milk from a bottle yesterday and didn't seem stressed for the first time since her surgery.  When she is able to take more than 10 milliliters by mouth she can go back for a swallow study.

Back at the house on the hill

Yesterday Adelina was off oxygen, I checked her saturations and she looked good, two hours later we were on 2 liters of oxygen and twenty minutes after that on our way to the hospital.  Even on the way her needs were fluctuating and once we were at the hospital they had to keep adjusting how much she needed.  They don't know why she needs so much more help and she looks like she feels pretty crummy.  We now know that her blood pressure is high so she started meds tonight which means we will be here a couple more days while they sort it out.  Poor baby :(

Oxygen Saturation

Christmas day we kept noticing that Adelina was looking blue.  We'd check her oxygen saturation levels and they'd be within her normal range.  Finally, around eight at night I caught her dipping into the high 60's and knew that she had been dipping all day.   I turned up her oxygen to 1/16, then 1/8, 1/4 and finally 1/2 a liter (we even went up to 3/4 for awhile).  The nurse practitioner on-call said that if she stayed at 1/2 a liter we would need to bring her into Primary's.  We waited and decided to keep a close eye on her all night and bring her in in the morning if she was still at a 1/2.  Because Addy has no oxygen reserves it can take a lot more oxygen to catch up so during the night she gradually went back to 1/16 and 1/8 depending on the time.  So here is the BEST part :)  This morning she kept sneezing and wouldn't take her pacifier.  All of the sudden she sneezed out a large hard lump of mucous.  It had been blocking her airway.  Guess who's oxygen free???  :)

Merry Christmas!

We were given a photo session with fotofly for Christmas, this is one of my favorites :)

It's happened...

Wednesday I started to notice that Adelina's oxygen saturation was sitting between 75% and 77%.  She should be between 75% and 85%.  Then, she started to sit right at 75%.  By the evening she was going between 74% and 75%.  I was trained at the hospital on how to use the oxygen but had never actually turned it on.  I had also never hooked the tube to the tank and I couldn't hear it when it was on.  Thank goodness for the nurse practitioner.  I still went to bed frazzled.  We were able to get everything running and with the lowest setting we are now sitting between 77% and 78%.  The sad part is that we only expect to go up from here and because the tank is not light our mobility has gone down.  I hope that we will get more used to it so that Addy isn't always stuck in the same room.  Who am I kidding, I don't want to always be stuck in the same room and I don't want to limit holding her because of her tubes.  I put her to bed and she was working so hard to get the oxygen off then with one quick swipe she'd pulled her feeding tube out.  I have a feeling she is going to have a LOT of tape on her little face.

We went up to PCH and were told that she is growing and the shunt is narrowing so the oxygen doesn't surprise them at all.  I was hoping that they would say we had overreacted and she didn't need it but obviously that didn't happen.  We are hoping to make it to four months before she needs more intervention but right now she is only nine weeks old.

Early Intervention

Primary Children's sets you up with Early Intervention right away so when these two sweet ladies came to visit I wasn't sure what to expect.  The first visit was to decide if we qualified...we probably could have verified that over the phone :)  Today they came again to establish a plan of action.  We are going to work on getting food by mouth and another swallow study.  Her occupational therapist has 30 years of experience so I'm counting on it to help us learn to eat.  We take so many things for granted.  I feel like the longer she goes without eating the harder it will be to teach her.  Babies with HLHS spend very little time on their bellies so we are going to work on strengthening neck muscles without putting pressure on her heart.  If she's asleep and I recline too far she'll fuss and wake up until I sit up again.  Adelina has pretty good head control for her age and considering all the tubes that have been stuck to her head and neck.  We are so grateful that she is doing so well.

busy, busy

Wednesday morning Adelina and I were up going through her morning routine of being changed and weighed when my poor husband started throwing up.  Illness is a real danger to Addy so we had already decided that I would go stay with my brother and his wife if anyone got sick.  So, I quickly packed up and left.   Wednesday night Adelina had a hard time settling down but I was finally able to l lay her down around midnight.  I dutifully got up through the night and added milk to her feeding bag.  When I woke in the morning she was all wet and I was feeling really bad that she had thrown up and I hadn't noticed.  I went to change her clothes and only then realized that we had once again fed the bed.  Sometime during the night Adelina had pulled her feeding tube out and in the dark I hadn't noticed.  She still gained 10 grams and luckily I was able to return home yesterday.  These pictures were taken one right after the other :)

Thursday morning our two-year-old went in for ear tubes, she had to be there at 5:45 am.  My sweet mom woke up bright and early and now our Lily can hear again... yay!  We notice that she still doesn't listen to where a person is, she just announces where she thinks they might be and runs there. Also, she woke up from her nap and after I asked if she wanted some popcorn, she repeated the word "popcorn" over and over again practicing the pronunciation.  Grandma asked her to say "pop" to get her to say it correctly and she just kept saying, "I don't want popcorn."

After returning home we had visitors from a birth to three development place.  It's hard to know if we should really add one more thing to our plates.  One of the ladies that came works on development while the other is a nurse and would like to work more on feeding.  There is a cost involved and so far Adelina is right on track other than eating by mouth.  She smiled at us much of the time they were here :)

Daddy/Daughter time

We gained!

Adelina weighs 4.74 kgs or about 10 lbs 7 ounces.  The nurse practitioner calls every Tuesday from the cardiac clinic but we have been hearing from one every couple of days due to a lack of weight gain.  Well, today she gained 120 grams (we need between 25-35 a day).  Now they are saying she may not need as many calories.  I asked what would happen if she continued to gain so well, assuming NEC or something terrible, the nurse replied "she'll be really fat." :)

It's beginning to look a lot like Christmas!

We've been enjoying all her smiles but finally took a picture.  So grateful for this little princess!

loss

Since before Adelina's heart cath we have been struggling with Adelina gaining less weight than we would like.  She has been retching and throwing up a lot of milk so we are trying different things.  First, we switched formula but it almost immediately got worse.  We went to straight breastmilk and it seemed to get better but she still needs more calories.  Now we have doubled the amount of zantac that she's getting and she is doing so much better, we are back to her original formula.  Can't wait to weigh her this morning, praying that she has put on some much needed weight.

Baby smiles

Daddy showed up last night!  We are so excited and so is baby Adelina, she gifted him with a huge smile when she saw him.  She loves to watch our faces and the kids have been going to great lengths to get her reaction.  So far we've been enjoying her grin too much to stop and take a picture but we will catch it soon :)

We are home, yay!!!

When we arrived at the CICU this morning Adelina had had a wonderful night, no more mysterious fever and no more need for oxygen.  Early yesterday evening she had been able to go off oxygen for an hour but then needed it again but by 3a.m. she was finally able to wean off of it.  I came in to a crib with a mobile and little toy attached as well as a stack of books they'd been reading and a couple of toys.  She had been engaging the nurses, smiling and cooing.  Adelina for the last two days has not been making eye contact but today wanted to interact.  We are so grateful that she is feeling better and know that it's due to all the prayers on her behalf, thank you.

Still in CICU

Our Adelina is having a rough patch.  She woke at 6 am with a fever of 103.  It took several hours but they were able to get it down, when I left the hospital they were giving her tylenol to bring it down from 100.  All the blood tests and cultures have turned up nothing.  She has been on room air at home but is now needing oxygen.  The combination of the fever and oxygen are keeping her in intensive care.  She just looks so miserable.  They've discussed possibly going home tomorrow but in the same breath sending us to the "floor." Praying that she improves with rest.

Ready for rest

Adelina's heart cath went really well!  We are so grateful for all the prayers offered on her behalf.  The narrowing ended up being a pretty big deal.  One side of the narrowing was around 80% pressure and the other 50% they should be the same or else her heart is working too hard.  Also, her gut wasn't getting sufficient blood flow.  I expected to get a call between 11 and 11:30 but they called at 9:45 to say they were done, what a relief :)  We also learned that she has another unique part to her heart that doesn't cause any issues but does matter for her next surgery.  She has two superior vena cavas, it's really rare.

Adelina did not like coming out of the sedation.  We spent all day trying to make her comfortable.  Her cries were heart wrenching, she was running a fever and her pupils were dilated.  Finally, at four o'clock they gave her Adavan and she's been sleeping peacefully ever since.

6 weeks post op

Thank you fellow heart mom for reminding me about our exciting day.  Adelina is 6 weeks post Norwood.  We celebrated yesterday for about 2 seconds before she went in for her heart cath but will continue to celebrate.  Adelina can now be lifted under her arms and lay on her stomach for tummy time.  We can also now recline in a chair while holding her (this has been the toughest to avoid).  So excited that we are six weeks out!

Night so far...

Bath.  Clean Clothes.  Hold medicine.  Change feeds.  It seems pretty simple, and it is but it's 4:35 am and I have had only a few hours of sleep.  Around 8:30 we bathed Adelina, she hated it and screamed until she threw up, all over herself :(  We ended up just using a washcloth to clean her up.  I then washed her hair, she LOVED it.  At ten, I filled Adelina's feeding bag with her regular high calorie milk.  At midnight it had to be changed again to milk only without added formula.  At 2:30 it had to be changed again to pedialyte and seven minutes ago all feeds were stopped.  Every time a bag is changed I add an additional 12 ml to account for the tube but they never seem to run out when they should.  Last night I added more just so she wouldn't run out early but, she still ran out five minutes early with just plain milk and thirteen minutes early with the pedialyte.  Oh well, I did my best.

Tubes

My wonderful mother took Lily in to the specialist and sure enough she needs tubes.  One eardrum isn't vibrating due to fluid build up.  I had started to question whether she would need them since she really has a large vocabulary for such a little girl.  "Gethsemane" came out of her mouth the other day.  It's her favorite song by Claire Ryann :)  She's such a fun, spunky toddler and insists that Adelina's name be pronounced "Adelina" not "Addy."  She also insists that she belongs to her and keeps calling me by my first name instead of "mom."  We are so blessed to have her.

So sweet!

Our first outpatient Echo

I ignorantly thought nothing would be needed until we got closer to Addy's second surgery.  Imagine my surprise when we were told that early next week we will need to go to for her first heart catheter.  Near her aortic arch, that has been rebuilt, is a portion that is narrowing.  For a single ventricle baby that is bad news, her heart is already working too hard so they can't let it have any resistance.  A catheter will be fed into her heart and a balloon will be inflated to enlarge the opening.  I'm grateful that something can be done about this but sad that we will be back in the hospital after just three weeks.  It's a same day surgery but she will be kept over night in the Cardiac Intensive Care Unit just to be safe.

We also met with speech therapy to assess feeding.  Let's just say the feeding tube is going to be around for awhile, I don't know why I was so surprised.  I know that our little one is critically ill but for a short time I think I had convinced myself otherwise.  No worries, a little sleep and things will be back in perspective.

There were three of us having babies with HLHS at Primary Children's the same week.  Precious Hope returned to heaven on the 31st of October.  Cute little red headed Colten ended up having a different diagnosis but is returning to heaven tonight.  My heart is breaking for these amazing families.

She wore herself out trying to get her arms free.

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 :)