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


Erin said...

Go Sammy, go! So excited you get to see his beautiful little face even more now. Even more excited about his progress, and the thought of all four of you at home and snuggled up together. Love you guys!

Mark and Jenn said...

What great news! Praise God for continued progress. We keep praying.

Eleanora is cuter than ever... what personality! :D

Megan said...

Hooray, hooray, what great news!!! I am such a proponent of breastfeeding, but I think you guys made the BEST decision about going with the bottle and just worrying about getting him home for now. I'm sure I would have done the same thing!!!

Anonymous said...

YIPPEEE!!! Such great news!!! And what a handsome little guy. I love how his cheeks are filling in. :)
So glad Beth and James were able to help in such a BIG way!
Praying for your rock star!

Anonymous said...

Forgot to sign off!

Much love, Kami and Ryan

kirstin said...

love reading this, guys!!! we will be praying, and are SO excited about the possibility that you may have samuel home soon!

as a note of encouragement, burke wasn't gaining weight for the first couple months after he was born, so I did the nurse-then-bottle thing every feeding for the first month (with strong words of caution from our lactation consultants). he transitioned to solely breastfeeding at the 2 month mark with no problems, even with so much exposure to bottles. I'll be praying for the same thing with the little mister!
love you guys!