April 30, 2011

THREE POUNDS!!

 Eleanor finally reached three pounds and she is really happy about it!!  

She is now eating one whole ounce of breast milk every three hours and growing as we speak!  She is just barely 3 lbs., but we are still celebrating the milestone.   Next goal:  3.5lbs!

She is also very excited about the births of her two new friends: Ricardo Federico Puig, and Patrick Walsh Browne IV!  

Enjoy this video of our very active baby girl

Night Night,

Emily & Robert

April 26, 2011

Sorry for the delay in update but Eleanor has been busy.

Today she is 2 lbs 14 ounces. The docs think that once she gets to 3 lbs she should just take off in weight.

The supplements Emily's taking to add fat seems to be working. Eleanor is feeding once every three hours and right now she is taking 26 ml in that hour.  27 total calories.

She is more alert.  She is looking around a lot, and now that she is a little bigger, Emily and I are able to hold her at both visits.

Today Emily actually had Eleanor in her shirt and the doctor helped her to practice breast feeding. She was able to suck and breath no problem. It was the first time for the breast feeding practice. The doc wanted to see what would happen and to let Eleanor smell and feel what breast feeding is like.  They were very pleased - today at lunch Eleanor spent the entire visit practicing feeding!  She still gets her lunch from the feeding tube.

We added some pictures to Eleanor's house, she has a picture of Mama and Daddy and her bruppy (brother/puppy), Charlie. So each morning while drinking her morning cafe au lait she is able to look at her family.

All for now.  off to bed.

- Robert

April 20, 2011

April 20, 2011
Eleanor is still doing very well. She did however loose an ounce last night. She is 2 lbs 10 ounces. The Docs are not worried. They increased her feedings to 60 ml and added more calorie fortifier (2 more calories for a total of 26 cal a feeding). They also prescribed a supplement to add more fat content to Emily's mama milk. This added fat will help Eleanor to gain weight. She needs to gain weight!!


Emily had wonderful visit with Kaki today at lunch. Emily was able to hold her and have more mama daughter bonding time. Kaki was able to give Eleanor a kiss for the first time. It was really nice. I bet there will be more kisses to come from all her aunts, uncles, and grandparents.


Tonight was also really nice. Emily and I walked in and Eleanor was just finishing her feeding. Usually when she eats she falls asleep, but not tonight. Her eyes were wide open the entire visit. She was stretching her legs and arms and looking right at us. She was so content and happy.  It was the first time that we felt like we were playing with her. Of course all this movement is like baby exercise and she burns calories, but it was so special. We gave her a pacifier that the NICU uses to teach the sucking reflex and she loved it!  She took it from me and held it in her mouth herself as she sucked on it. When we took it away she was still sucking and making the cutest sounds.


When Eleanor was finished eating, Emily was able to hold her again...Kangaroo style...And still, her eyes were open. She even looked up at Emily and it seemed Eleanor was saying your my mama. I love you.


-Robert

Grooming.

I found my finger!  Self-soothing is easy!

So happy...

... and playful

I can do it all by myself

Really... I can

I see you, Mommy.  This is delightful!

April 18 and 19, 2011

April 18:
After the blood transfusion, Eleanor looks so good.  Her coloring is now back to a healthy pink. Her hemoglobin count is up to 12, but the doctor said it will go down and hopefully settle at 10.  The doctors want her to increase her own blood supply.  More transfusions mean that her body will become dependent on added blood and learn that it does not have to make its own.  They have to find a balance and hope that she can keep increasing her blood count.  She is off of the oxygen and breathing on her own.  She is still on 57 ml of milk with four added calories over six hours.  She gained 20 grams which is almost an ounce.  The doctors had to hold her feedings before the transfusion.  She still managed to gain without two of her feedings!  

We have both been holding her during visits.  It is so nice to hold her!  

April 19:
Today, Eleanor only gained two grams (1128g, still 2 lbs 11 oz).  The doctors said that they are going to increase the breast milk tonight and then tomorrow add more calorie fortifier.  They cannot add the calories at the same time they increase the milk because it may be too much for her little tummy to handle.  She has to continue to gain ounces steadily.  


We started the process for Eleanor's "Step One" screenings. By law, all newborns must be tested for four major disorders.  The Step One screenings test for a total of fifty disorders.  Her blood sample will be sent to a special lab tomorrow morning.  Our NICU doctors are conferring with a hematologist to decide when we can test Eleanor for my blood disorder, Factor V Leiden.  She may have to be a little bit older for that test to show a positive or negative.  Let's hope she is negative, but if she did inherit Factor V Leiden, it is important that we know early so she can be treated well.  Step One screenings do not test for it because it is so rare.


Tonight, she looked so good.  She was peaceful in her house.  She was wearing a warm hat and socks.  Robert and I read books to her in English and in Spanish.  Thank you to the Stella family for the sweet children's' books en Espanol!  Eleanor loves them!

Emily

April 17, 2011

April 17, 2011:

Over the last few days Eleanor has done really well!  We were able to start the kangaroo holding again, she gained another ounce (2lbs 9oz), she finished her antibiotics, and she came off of the oxygen.  Friday she lost an ounce and then yesterday we were ecstatic when we walked into the NICU and saw that she had gained three ounces overnight!!!!  (2lbs 11oz)!!!!!  

Today, she is back on the oxygen because early this morning she had another episode of apnea.  The doctor said that it is nothing to worry about because it is normal for micro-preemies to experience this ongoing.  Eleanor's weight stayed at 2lbs 11oz, but she didn't loose any grams.  She is still 1160 grams!  Her feedings have increased again to 57ml of breast milk over six hours with two hours rest and then repeat.  She is receiving four extra calories in the milk.

Tonight we had the results of Eleanor's CBC.  She has a low hemoglobin count of 9.  It should be 10 or above.  She does look pale and splotchy.  The last time they tested her hemoglobin it was 13.  They are giving her another blood transfusion.  The doctor said that it is normal for babies like Eleanor to have several transfusions while in the NICU.  Hopefully this is her last one.  The doctor lowered her oxygen back down to 21% and she should be off of it by tomorrow.

Enjoy these photos from the last few days!

First Time to Kangaroo after my infection.  I love it!

Close up Kangaroo.  Trying to find my thumb.

Hi!

I love our visits.  

Can I come out now? Is it cool?

How many photos can you take of the same thing?

Daddy!

Back to sleep.  So comfy.

This is where I live.  

Little Angel. She can do no wrong.

Taking a break from my feeding tube.  Great photo opportunity. 

Can you tell I am filling out!

Again.  Love the photos with nothing on her face.

Kaki watching me sleep while Mommy takes more photos

Here I am sleeping in the blanket that Carmen made for me.  Thank you Carmen! I love my little lambs.

April 12 & 13, 2011

Tuesday Eleanor was still on the oxygen, but it was set at 21% which is nothing.  She was essentially breathing on her own.  The night before she had two drops in her heart rate.  The NICU doctors wanted the pediatric cardiologist to examine her.  He came to the NICU during visiting hours so we were able to meet him and to be there for the exam.  He did an EKG and then a sonogram on her chest to look at her heart.  He said her heart is perfect and the two drops in her heart rate can only be attributed to her infection.  Great News that Eleanor's heart is perfect!  

Sleeping on my side

Also on Tuesday, we had to do a breast milk culture to check for bacteria that could be in the breast milk.  Because all of Eleanor's cultures were negative for bacteria the doctor thought it would be a good idea to check the breast milk.  Today we got the results that the breast milk is perfectly fine!  We are so glad!!

Rolling over

Today, Eleanor is doing really well!  The first visit was a great visit! She gained another ounce. She is now 2lbs 8oz.!  The doctors increased her feedings to 30ml of breast milk for every six hours.  She is off of the oxygen completely - no tubes in her nose.  We all know that she hates those.  She is also going to off the antibiotics tomorrow.  Originally she was supposed to be on them for a total of ten days, but the doctors know that the infection is out of her system and that too many IVs can damage her veins permanently.


She sucked her fingers for the first time.  This is an important step because all preemies have to learn the 'suck-swallow-breathe' routine before they can go home.  She is also been caught rolling over!  She can move her body and roll herself over.  She can even get onto her knees when she is on her tummy.  The doctors think she is a wonder baby! 


More good news; the radiologist confirmed that there is absolutely no bleeding in her head! No new bleeding from the infection and the bleeding of the ventricles from the first week has already been absorbed!!!  Great!

Look at me suck my fingers

Tonight's visit was just as great.  Eleanor was so cozy and warm in her incubator. She had just finished a six hour feeding when we got there.  She had a full tummy and was quite happy.  She slept on her side curled up into a little ball.  She was so precious.  She opened her eyes a few times, but she was way too tired to keep them open.  It was like she just wanted to check to make sure we were still at her bedside. 


One of us may be able to kangaroo tomorrow! 


We are back where we left off.  The infection did not set her back at all!
Love,
   Emily & Robert