Tuesday, September 28, 2010

A Few Pictures

Here are a few pictures of our recent days...

Ahhh, baby love...

Eleanora woke from her nap yesterday and insisted on going to "bed" but not in her crib.  She wanted a pillow, "blankie", her baby and lambie (all night time essentials) tucked in with her on the floor of her room.  She then requested some milk and grapes in her cozy nest.  Here is a picture of the silly girl showing me her yummy snack.

Samuel continues to grow well, although nursing is still a challenge.  Thank goodness for the help of our Moms!  Ben's Mom was here last week, and mine is here this week.  We are so blessed by the help with Eleanora, the house, and all the craziness of life with two kids under two!

Saturday, September 18, 2010

Crazy Beautiful Life

Leaving the NICU - YAY!

Driving home

Adorable welcome home sign from Aunt Natalie

Wanting to wake up her baby brother

First bath at home

The last 5 plus days have been wild, exhausting, exasperating, and filled with so much joy. Having both of my children under one roof is more overwhelming and wonderful than I ever imagined. Eleanora loves (and I mean loves) her baby brother! She wants to kiss him all over, touch him all the time, wake him up when he's sleeping (oh dear!), and calls for him at the door when he's in another room. She also imitates everything we do for Samuel with her stuffed animals. She burps them with burp cloths on her shoulder, shhh's them, puts them "ni-ni" (night-night), and gives them bottles. It is so so sweet.

Speaking of bottles, our little man has not made much progress in that area. He still refuses to nurse, or when he does gets frustrated quickly. We're still on the nursing (attempt), bottle feed, pump schedule every three hours which is utterly exhausting. Thank goodness for my wonderful husband who is up with me every time in the night to wash bottles, feed Samuel, and make sure I don't wonder deliriously into a wall or something. Natalie continues to be an invaluable help, cleaning, doing laundry, dishes, occupying Eleanora, holding Samuel, keeping me sane (no small job!) and just being the most amazing and selfless sister on the planet. She and Liam have sacrificed so much to take care of us and we are at a loss as to how to express our gratitude.

As draining and overwhelming as this all has been, I am so unbelievable grateful to have our little guy home and in our arms! He is so sweet and snuggly, loves to be held (thank goodness for the Moby - it's perfect for preemies!) and wants nothing more than to be close to us - which is fine by me. We are all just so in love with him!

Monday, September 13, 2010


I just got an email with some beautiful pictures our friend Sarah took today. She graciously watched Eleanora while we were at the hospital. She is an amazing photographer, and lucky for us she brought her camera! Thanks, Sarah!

Home Sweet Home!

Just a quick update to let you all know Samuel is home and doing great!! He was discharged today at about 12:30 pm and we are so excited! Eleanora is completely obsessed with her baby brother, kissing him and patting him constantly. Her first words after waking up from her nap this afternoon were, "Hi to Baby Sa-ee?". She loves-loves-loves him and has so far been very gentle and loving. I'll try to post some pictures soon, but for now we are soaking in the joy of having our entire family under one crazy, sleep-deprived roof. Yay!!

Saturday, September 11, 2010

We are Getting Close!

Samuel has successfully made it to day 3 of 5 on his spell count and we are on track for release on Monday! We received a visit from the discharge coordinator with instructions for home care which was very exciting. Samuel is scheduled for a car seat test tomorrow, which he must pass to go home. His vitals will be monitored while he sits in his car seat to be sure he can tolerate the trip home.

The pediatric neurologist examined Samuel due to his brain bleed. She is pleased with his progress and by the fact the blood is continuing to resolve on its own. She does want Samuel to continue to be closely monitored with another head ultrasound in one month, another in two months, and a full neurological and developmental exam in four months. For now, she was happy with his reflexes and responses and said he is acting completely appropriately for a fetus (going by adjusted age, Samuel is -2 weeks old). We will need to watch him closely for any developmental delays over the course of his childhood, so that any issues can be addressed quickly with therapy. It is all overwhelming to even begin to think about, so for now we are totally focused on getting him home and in our arms full time.

Last little bit of tape on his face

Sleeping soundly under big sister's watchful eye

And now for a few laughs from the land of Eleanora (or "Nowa" as she now refers to herself). The other day Natalie and I were talking while the bath was filling for Eleanora. Suddenly she ran into the room and said, "Big Bounce tub!" and then ran away. We peaked around the corner to see this...

Yes, Big Bounce (aka big kangaroo) apparently needed a bath too. Since he was already soaked, why not let him enjoy the soak?

Thursday, September 9, 2010

7 Weeks

7 weeks ago our world was turned upside down by the unexpected arrival of Samuel Peter. The first time I saw him he was breathing with the help of a ventilator, swollen and covered in bruises. His little body shook without sound when he cried and it broke my heart. I wasn't able to hold him, only lay a hand on his tiny 4 lb 2oz body inside the incubator and watch him struggle to survive.

7 weeks later, Samuel's progress is amazing. He is now 6 lb 2oz, with pink chunky cheeks and a strong cry. Today was spell-free, which means we are still on track for release on Monday. We've come so far and are so close to the end of this chapter and the beginning of a different kind of exhaustion. The kind of exhaustion I'm looking forward to experiencing!

Wednesday, September 8, 2010

Small Setback

Today while sleeping blissfully in my arms, Samuel had an episode of bradycardia. Unfortunately, this means the spell count will start over, with tomorrow being day 1. Boo. We were hoping this weekend might be his homecoming party, but I guess Samuel had other plans.

On a lighter note, we've been trying to prepare Eleanora for Samuel's arrival as much as possible. Last night, we had the following conversation...

Me: Eleanora, who is Baby Sammy?
E: Baby Sa-ee? Baby Sa-ee!!!
Me: Is he your baby brother?
E: Baby broder! (points to her stomach) Baby broder!
Me: That's right, baby brother was in my tummy but soon he'll be coming to live in our house. Do you want a baby to live in our house?
E: Ummmm...yeah.
Me: What do babies do?
E: (in a high-pitched voice while rubbing eyes) Waaa, waaa. Baby cay-ing.
Me: Yes, babies cry sometimes. We'll have to take care of baby Sammy when he's crying. Do you want to be the big sister?
E: Yeah!! (thoughtful look) Where Na-na Leo (Natalie and Liam) go?

Thus ended our big sister conversation. I'm certain there will never be a dull moment with two under two in the house and I can't wait!

Tuesday, September 7, 2010

Wonderful Friends and Wonderful News

Eleanora "rocking" her animals

We have been so blessed by many many wonderful friends and family members who continue to show their love and support as we travel this l-o-n-g road towards getting Samuel home. We've been inundated with cards, packages, messages, emails, offers of help and food, and so much love. Last week we had a visit from our sweet Pittsburgh friends, Beth and James and their adorable daughter, Isabelle. They cut a day out of their vacation to Phoenix to drive the two hours to Tucson and booked a hotel in town. They spent 36 hours caring for Eleanora, filling our freezer with delicious meals, and tending to some much-needed projects around the house (repairing a broken window, for instance). We were so blessed to hear of their preemie experience and loved-loved-loved seeing Isabelle and Eleanora play, dance, and giggle together. What a wonderful breath of fresh air during such a tough time!

And now for the Samuel update...

Take a close look at this picture. See the tubes and tape on his precious face? As of Sunday morning, they are....completely gone. For the first time, we can stare at the completely uncovered face of our beautiful son. After many ups and downs, Samuel was taken off of oxygen on Friday morning. And to quote the resident responsible for his care, "he has been breathing like a rock star" ever since.

The next issue to address was feeding. Since Samuel is not a great nurser (interested one day, completely uninterested the next), he continued to have his milk poured into a feeding tube through his nose. We asked many doctors, nurses and lactation experts for advice, and received widely varying responses. The doctors and nurses seem to lean towards giving him a bottle of breast milk to get him home and eating on his own, while the lactation experts insist that will interfere with breastfeeding and cause confusion. We went back and forth and finally decided the most important thing right now is getting Samuel home and healthy where we can continue to work on breastfeeding on an outpatient basis. Saturday morning, Ben gave Samuel his very first bottle. Samuel did great. He paced himself well (preemies often forget to breathe while eating) and ate his complete feed all on his own. He continued to do great on the bottle and decided early Sunday morning that he was done with this feeding tube thing and pulled it right out. The nurse decided not to put it back in since he's been doing so well. Since then, he's been moved to "ad lib" feeding meaning he can eat whenever he wants, as much as he wants instead of the prescribed amount every three hours. We continue to work on breastfeeding, which he is very inconsistent with and still needs to be "topped off" with a bottle when he does nurse.

All of that means we are getting close to thinking about going home! We still have a couple of hurdles to overcome...

- Weight gain: Samuel is now 5lb 14 oz, but his weight gain has been inconsistent. He's had a few days recently of weight loss and the doctors would like to see him have a higher average weight gain before sending him home.

- Spells: Samuel needs to go 5-7 days without a "spell" of bradycarida, oxygen desaturation, or apnea. His last spell was yesterday so today is day 1 with no spells so far.

We are cautiously optimistic that he may be coming home over the weekend or early next week. Only Samuel can say for sure. In the meantime, we've been spending whatever time we have at home tackling our nesting projects and getting ready for our little guy's homecoming party!

Tired of those tubes in his nose!

Oxygen gone, only the feeding tube left

Samuel's first bottle

On Sunday we said goodbye to Samuel's first girlfriend, Sara. Samuel and Sara were born just 5 days apart and were due within a day of each other. They have been moved together to two different rooms during their NICU stay and have spent more time "together" then with any other person on the planet. Sara and Sam would often "misbehave" together, setting off alarms one after the other, crying when the other cried, and even laid facing each other staring into each other's eyes from across the room (I know, babies can't see that far, but it was very romantic). In the race to get home, Sara and Sam have been side by side, but this past week Sara made a break for the finish line. We are thrilled for her and her parents, but their presence is definitely missed. Our Samuel certainly is a gentleman, letting his lady friend go first, but now we need him to dig deep, and finish strong. The finish line is in sight!

Sara and Sam - first loves