Update April 11

Eleanor is on the mend. She is off the ventilator and back on the oxygen. The oxygen is at a low rate - She is mostly breathing on her own. Today she started feeding again. Just a little bit as not to upset her tummy, but enough to keep her full. She is much calmer when she is full.


The doctors do not know what illness she had but they said they don't always figure it out. Her blood culture is negative for bacteria at 72 hours and that is great! Hopefully whatever was bothering her will be out of her system. Her color is much better too. Eleanor had a sonogram on her head to check for bleeding of the ventricles. We will Not hear from the radiologist until tomorrow, but the technician doing the sonogram said it doesn't look like there is any bleeding. If there is any bleeding, most likely it will just be absorbed and cause no problems.


During this infection she was able to put on one ounce!! It is surprising to us. We thought she would loose weight. Eleanor is now back to her birth weight of. 2 lbs 7 ounces. We are so happy.


MaMare left today to go back to New Orleans. She misses Eleanor so much. We miss her too. Today was the first day she got to meet her other grandmother, Kaki. She just loved her Kaki. Kaki said she is the most beautiful baby in the world. Today she was taking after her Kaki because during both visits she just slept.


All for now, we will post more pics in the am.


-Robert

Bye Bye, MaMare.  See you again in June!

Mucho Gusto, Kaki! I am so glad you are here.

Mama's so happy that I am doing better

Two socks today?

Sat. April 9 (Part Two)

Robert and I just returned home from the evening visiting hours.  Eleanor was just finishing her blood transfusion.  Her color is wonderful!  The doctor told us that even though she looks better, she is still battling her Sepsis.  The antibiotics are beginning to work and she should be experiencing some relief soon.  


Eleanor's vitals are strong.  The doctor continues to decrease the settings on the ventilator slowly and Eleanor is breathing well.  He said that he thinks she will not need the ventilator after 24 to 48 hours.  All of the stomach bile has been extracted.  The doctor said it was a minimal amount anyway.  Her blood pressure is still at the top of the target range.  Her urine culture showed no bacteria and her blood sugar levels are normal.  We are waiting on the results of one more blood test.  We will know the results tomorrow.  


Eleanor is irritable - it is almost as if she is 'fed up' with all of this.  She cries (without sound due to the ventilator), but I can tell she is not crying in pain like earlier today.  I believe she is crying out of frustration and discomfort.  There is a difference.  Robert placed his hand over her chest and helped to calm her.  She opened her eyes wide for longer periods of time and looked at us.  We tell her that she will get better and we promise her that she will feel comfort again soon.


-Emily
  

Sat. April 9

The NICU is a roller coaster and we had a set back yesterday.


Eleanor was fine all day and had actually put 2 oz. on over night.  Unfortunately, when we arrived for the evening visiting hours, she had two episodes of apnea and her skin color changed from a healthy pink to a greenish-pale.  Once she began breathing again, the oxygen monitor showed a drop in the oxygen level in her blood and she was not her normal active self.  The doctor examined her and determined that she has either an infection or a low hemoglobin count.  


The doctor took a blood sample from Eleanor to know for sure what kind of infection she may have and a blood sample from me in case she would need a transfusion (the new blood would have to be compatible with Eleanor and with me for it to be the right match).  We had to leave the NICU at this point because it was close to 8pm and the visiting hours were ending.  The doctor told us to call the unit in a few hours when they had the blood test results.  They started her on an antibiotic IV drip as we left.


Robert called the NICU around 11pm.  The doctor told us that she had not had any more apnea episodes and that her color is slowly returning.  Eleanor's blood sample was taken too early. Everything came back as normal, but they know that she has an infection.  They ruled out a low hemoglobin count.  They said that they would take another blood sample later to determine the cause.  


This morning at 6am the NICU called Robert.  At 5am Eleanor had a third apnea episode and her heart rate dropped.  The doctor had to perform CPR and intubate her.  She is on the ventilator to prevent more apnea.  The IV continues giving the antibiotics and is also providing nutrients as her feedings have been delayed for now.  


The doctor did tell us that when they began working on her she was her usual strong self.  That made us feel much better.  


---------------------------------------------------------------------------------------------------


We just returned from the afternoon visiting session.  
Eleanor has been moved from her second stage incubator back to her first stage open bed.  She now has the ventilator and two IVs.  Her feeding tube is still in place, but the doctors are using it to extract stomach bile which will make her feel much better.  She is feeling pain and discomfort, but she is being given a low dose of pain medicine that will make her more comfortable.  Her blood pressure had to be watched after dispensing the medicine.  The medicine often causes a drop in blood pressure.  After the nurse pushed the pain medicine through, Eleanor relaxed and was instantly comforted.  Her blood pressure stayed at the top of the target range which is wonderful. 


They are doing a blood transfusion so that she will have stronger antibodies in her blood. Like all preemies, she was born with not enough antibodies or none at all.  The new blood will help her combat the Sepsis. The doctors started the transfusion after we left visiting hours at 2pm.  It will take four hours to complete.  It has not been a full 24 hours since being given the antibiotics.  Once the antibiotics begin to work and the blood transfusion is complete, Eleanor should return to her healthy pink color and her body will fight off the infection.  We have to remember that we are on Eleanor's schedule, but the doctors think she will be finished fighting the infection after three more days of antibiotics.  


The doctors are happy to see her moving and showing off her strength while being sick.  She puts her heels on the bed and lifts her hips to push her shoulders and head up forward.  The doctors told us it is extremely hard for even a healthy term-baby to do that.  They are so impressed and encouraged with her physical and mental strength.  They tell us she is going to be fine!  


We are not stepping backwards, we continue to go forward while battling her infection.  Once it is cleared up, she will continue her progress.


-Emily

Eleanor Update April 7

Thats my Tia...she is new to me

Eleanor took a break from writing yesterday but she is back at it tonight.


Yesterday was a big day. She had her first visit from her Tia Mari.  Eleanor gave her a squeeze of the finger and a wonderful look with her eyes wide open. They bonded.

AHHH Stretch

Yesterday Eleanor also started a different feeding schedule. She is feeding 23ml every three hours. The Docs started feeding her by gravity instead of the machine. They put 23 ml in a tube, connect it to her feeding tube, hold it above her head, and let gravity take it down. It fills her tummy faster and it simulates a natural feeding with mama.  


Last night Emily and I were visiting and Eleanor was moving all about. She would start off laying in her bed normally and as our visit went on she managed to wiggle herself 90 degrees from her original position. Her head was towards the side of her bed. She did this twice while we were there. She is strong. These wiggles are a mix of dramatic stretches and lifting of her body with her upper back and legs.


It is so hard to leave her.

I LOVE DADDY

Today MaMare and Emily went at the lunch visit. Eleanor was doing well, but she did loose one ounce (2lb 4 ounces).  The Docs want her to gain weight so they added a calorie fortifier to the breast milk which will give her about 7 more calories than just the milk which has about 20, total: 27. They will use the calorie fortifier with all her feedings.


Eleanor has tolerated all the increases in her milk, and the doc said weight gain may take a few days. Babies who have growth restriction inside mama have a tendency to grow slower than baby's without growth restrictions. The docs are not overly concerned about it.

Me and Daddy

Tonight was my turn to hold her.  I did not kangaroo her, but I held her as she was wrapped in her blanket. We took some wonderful pictures together! It seemed as if she figured out her eyes, she was able to open them wide, look around, and keep them open the longest they have been open. She was able to look at mama and follow her movements.
Just awesome!!

Eyes Open

As I was holding her the nurse came over and started the feeding. I held Eleanor and the syringe of milk. Our first Eleanor - Daddy dinner!!  It was a wonderful bonding experience for us.  A few seconds later we had another wonderful bonding experience as she vomited on Daddy. It turns out her little tummy was not quite ready for the gravity feedings and we went back to the continuous feeding machine.  


She gets a continuous feeding of 16ml for the first hour and then 7 ml over the next 30 min she then eats again 3 hours after she starts.


MaMare and I were talking and we have to remember that she is doing well, but she is still developing and she was not due to be born until the end of May. We all want so badly for her to do well - and she is, but we need to be patient. We are on Eleanor's schedule not our's or the docs'.  The feeding was a perfect example.  She told us, "Hey that's too much milk too fast." It is a day to day process and she may be in the hospital for a month more. However, she is breathing on her own and needs no iv.  All Great!   We see other families in the NICU and we can tell that Eleanor is doing well.  Eleanor is blessed.

sleep

One more pic for fun:


-Robert

Update April 5

Eleanor is still doing wonderfully.


Yesterday was the first day back to work for Daddy so Mama and MaMare went to visit Eleanor at lunch. Emily was asked if she wanted to kangaroo hold Eleanor, but Emily said that it's Robert's turn and that he can only visit at night.  The nurse said that she was about to start a round of feeding for Eleanor and that it is important that Eleanor start to associate feeding with Emily.  Emily kangarooed and Daddy will get to hold her tomorrow!

Dramatic Baby

The visits are not as eventful as they were in the beginning.  Now that Eleanor has increased her feedings she sleeps a lot!  I talk about her like she is old and she has only been around for 11 days. She eats, gets a full tummy, and then sleeps - just what she needs. Although at the night time visit she was moving more, opened her eyes, and gave us some great squeezes on our fingers. She woke up towards the end... she was hungry.   

She is still taking 7.5 ml of milk for 6 hours, however the nurse said they were going to change the feeding schedule today. Eleanor will be eating on a "full-term" baby's schedule.  She will be eating 20 ml of breast milk every three hours.   We will have to wait to see the difference. She did not put on weight. She is still 2lbs 5 ounces.


We have noticed that her hair continues to grow.  I dare say it is getting longer and fuller.

Feeling really relaxed

Even though she is moving less she is still amazing and we can just sit there and watch her for the whole two hours.


It is so funny; every time she makes a sound it is the cutest sound we have ever heard.  If she moves her leg we have to take a picture.  The cliches about new parents are true!


We are so in love with her!  
-Robert

Update April 4

Eleanor continues to make progress.

Loving my new sleep position

Today Emily and I got to the hospital and we found Eleanor on her tummy sound asleep. That is a first for her. She is always on her back. She was just beautiful. Her arms were extended over her head just sound asleep. She is resting much better probably due to more milk which means a full stomach. Today she was taking 7.5 ml of milk every hour for 6 hours. That is up from yesterday which was 6 ml an hour.

Resting on my tummy

Tonight was Emily's turn to kangaroo, and Eleanor just slept the entire time. She got a lot of kisses from her daddy and her MaMare (Mary, Emily's mom) was able to give her kisses too. Also when we first got to her bed we noticed she did not have an iv any more. Her mama hates ivs so she is so happy Eleanor does not have to go through that pain anymore! Right now only a feeding tube, heart rate monitors, and oxygen saturation monitor on her foot. She is much more comfortable and able to move her arms more freely. Nothing weighing her down.
She gained only a small amount of weight today. She is still 2 lbs 5 ounces but she did put on 14 grams. It is crazy to think that she gains grams. She is very strong.  It is hard to reposition her.  If she does not want her leg or arm moved it takes a lot of effort to move them. I think she would be a contender in the 2 lbs weight class.


She is still breathing on her own which is great.

Ugh.. The noise

Kangaroo with mama, Look no IV

Today Eleanor was put on the grid. After three days of trying we finally got her birth certificate. Her official name is Eleanor Lynne Birtel.  After a revision I went from Roberto back to Robert. Next... a social security card.


-Robert

Eleanor Update April 3

Eleanor is getting bigger. She put on one ounce from yesterday to today. She was born at 2 lbs 7.7 ounces and her lowest weight got down to 2 lbs 3.5 ounces. She now weighs 2 lbs 5 ounces. There is another baby in the NICU who is 6 lbs. Looking at Eleanor and then this baby is crazy. It's like looking at a sumo wrestler. That other baby is around 3x bigger than Eleanor. I weigh 180 lbs and it would be like me standing next to some one who is 540 lbs. I have not seen a baby who is 8lbs yet but the difference in size is just amazing.


She has also increased her milk from 5 ml every hour for 6 hours to 6 ml every hour for 6 hours. Each day she has increased her milk intake.


The docs really don't have much to say. They just pass by and say she is doing well and we just need to be patient. Each day we just want her to gain a little weight.  She continues to breathe on her own with good oxygen saturation.

Kangaroo

Today it was my turn to kangaroo Eleanor so she spent 12:30-2:00pm hanging out on daddy's chest. She mostly slept. I talked to her about different things and told her about the blog and asked her to check it out if she had time. Right now she is only allowed outside her house during one visitation b/c it takes a lot of energy for her to be outside the house. We need her to conserve her energy so she can grow and eat. Emily and I have noticed that now she is eating more, she is much more relaxed. During our visit tonight she spent the whole time sleeping.

Sleeping with her Sleep Sheep

So Sweet

She is much happier without the oxygen. Right now she has a saturation monitor on her foot, heart rate monitor on her chest, IV in her left hand, and a feeding tube.


-Robert