Hospital Update- 4/8/2013

Email sent to family and friends on 4/8/2013:

Yesterday the doctor put Evin back on a tiny bit of methadone because she was experiencing so many withdrawal symptoms.  Often times when babies are on this medicine during and after surgery, they experience withdrawals when taken off.  She was given a tiny bit at 8am yesterday, which made her sleep most of the day and then stay up most of the night!  I am not sure why doctors decided to give her medicine at 8am that makes her sleepy…I think most people would have decided to give it at night!

Evin still spit up quite a bit yesterday, but it has gotten much better today.  We tried nursing a few days ago and she didn’t have any interest in it, so we tried again last night and she has been nursing wonderfully ever since.  She has spit up just once while nursing, so we hope this plus being back on the methadone is helping with the vomiting. 

Tomorrow the doctor will cut her dose of methadone in half again and start to wean her off of it.  I will continue to nurse and try to get the little squirt to gain some weight.  She weighed 6 pounds 11 ounces tonight, so we need to get her to pack on some pounds!

Mitch had to start back to work yesterday, but is continuing to stay at the hospital at night.  I know it is difficult for him to leave during the day, but he is trying to save up his days to use later in the year for surgery #2. 

Please pray for Evin to continue to eat well and to gain weight!  Also pray for Mitch’s sanity while he is at work and my sanity with a nocturnal infant!

Kori

Happy to see his girl after work!

Bright eyed and loving that paci.

Loving the gowns with mittens built in...we know she can't pull out her tube this way!

Hospital Update- 4/6/2013

Email sent to family and friends on 4/6/2013:

We have had several changes since the update from Thursday.  During the early Friday morning feedings Evin started spitting up a decent portion of her bottle.  This could be from several different things. 

It could be acid reflux that many regular babies have.  You would think this wouldn’t be a huge deal, but since she is a heart baby and is having to work harder for her food/calories, it is a cause for concern. 

It could also be her having a withdrawal symptom from the methadone.  She has shown a couple of other withdrawal symptoms, so if doctors decide that is what it is, they will either put her back on a very small dose and then wean her off of it again or they will let her withdraw over several days.

Evin’s feeding tube had come out a little bit and wasn’t going all the way into her stomach, so that could be causing the vomiting, too.  They fixed this today so it is possible that she could improve.

They did a belly x-ray and everything looked great, so we know it is not a stomach/intestine issue.

Evin has lost a tiny bit of weight the last couple of days from throwing up.  Tonight they started adding a little bit of formula to the breast milk in order to thicken it a little and try to keep it in her stomach.  Also, if she can keep it down this should give her the calories that she needs in order to gain weight.

We will not be able to take her home until she is gaining weight and keeping her bottles down.  Please pray that we can figure out the cause of the spitting up and can resolve it quickly!

Mitch & Kori

Evin in one of my onesies from when I was little.

I love her in this sweet little floral gown.

They elevated her bed in hopes that this will help her keep her feedings down.

Hospital Update- 4/4/2013

Email sent to family and friends on 4/4/2013:

Evin had a few big changes to her life in the NICU today. 

-They removed her picc line and the IV in her arm.  Now all she has on her are the leads to the monitors.  This makes Evin more comfortable and makes diaper changes and changing clothes much easier for Mommy & Daddy!

-She had her newborn hearing test and passed it without so much as waking up.  She slept soundly through the entire thing which impressed the nurse!

-She got moved into a big girl crib rather than the bed with a warmer that she was in.  She has been regulating her own temperature just fine, so she now stays in a crib. 

-They stopped giving her Methadone today, which was making her drowsy.  We are waiting for it to get out of her system to see if she is as calm as she has been the last few days.  We have been lucky without lots of crying so far, so we will see how she does without the meds!

-Feeding in the last 24 hours has been very hit or miss.  Sometimes she will do great and take the entire bottle and other times she won’t wake up at all to eat.  We have tried all sorts of things to try and wake her up, but she snoozes right through it all.  If she doesn’t finish a bottle or doesn’t wake up she gets fed through the feeding tube.  As I mentioned before, every time she eats is like running a marathon, so she has to build up endurance to be able to eat on a schedule like she should.  Mitch and I are trying not to get discouraged and to stay patient.  She looks and seems like she would be ready to go home in a few days, we just have to get the eating part down!

Mitch & Kori

The many faces of Evin.
When Evin is too sleepy to bottle feed she gets fed through her feeding tube.  This often results in hilarious faces from our funny girl!  I guess the feeling of her belly filling up without actually having to work for the food makes for some interesting faces.  Cracks us up!

A tiny smile!

I love watching Mitch love on her!

Cuddled up with GiGi.

In the arms of PawPaw

I bought the set of monthly stickers for Evin, but forgot that they came with "Just Born" and weekly stickers for the first month.  I attempted to take her 2 week picture today and this is what I got- one eye open and her mouth open.  She refused to make any other face besides this one.  I guess we will forgive her... ;)

Looking like such a big girl in her crib.

You can almost always find either Mitch or me in that chair holding her or staring into her crib.

When we got to Cook Children's we noticed that occasionally a line would appear down Evin's body and she would turn red on one half.  A nurse told us that this is called Harlequin syndrome and it is unrelated to her heart defect.  The doctor said it isn't very common, but it is nothing to worry about and that it will go away on its own.  Little Evin is certainly "special" in many ways!

My mom teaches 3rd grade and her class is constantly asking how Evin is doing.  They are so sweet and made these cards for her to bring to Evin at the hospital.  I particularly like the one of me standing with Evin.  I must need to work on standing with my legs together...

Hospital Update- 4/2/2013

Email sent to family and friends on 4/2/2013:

We had a very low-key day today back in the NICU, and Evin slept most of the day!  Things will probably be a little slower from here until we go home because we are basically just working on feeding.

-Evin got rid of 2 more tubes today- the stickers that were on her forehead and on her back.  I bet she is much more comfortable with them gone!

-An occupational therapist came to work with Evin a little bit today.  She was impressed with her ability to turn her head both ways and turn her head in order to listen to Mommy and Daddy talk across the room.  She said Evin is developing very well!

-The speech therapist came to give Evin a bottle and watch how she eats.  She said she was looking to see that she had a 1-to-1 suck to swallow ratio, that her vital signs stayed within a certain range and she wasn’t showing signs of stress.  It can be hard work for heart babies to eat, so she wants to make sure Evin is taking in more calories than she is burning.  Evin took the bottle well and kept almost all of it down.  We were proud of our girl!  We should get to give her a bottle tonight and then the doctors will evaluate how she did in the morning.  A decision should be made as to whether or not we will continue doing a few feeds with the bottle, or if we can move on to breastfeeding.

-Evin has been holding strong at her birth weight of 6 pounds 14 ounces.  We hope she will start to gain soon!

We are thankful for another good day and that Little Miss continues to make progress!

Mitch & Kori

Mitch getting some hands on time with Evin.  The occupational therapist suggested we do modified tummy time with Evin up on our shoulder.  This will begin to strengthen her neck muscles until she can do regular tummy time at home.

SO happy that we can now scoop up our little girl and hold her anytime we want!

Working on bottle feeding.

I adore this picture.  Resting so peacefully!

We are finally able to put Evin in some of her clothes.  Gowns are the easiest because the wires from her monitors can hang right out of the bottom and we can quickly change her diaper.

I caught a sleepy smile!  Must have been a good dream.  :)