Eleanora

Eleanora has been such a trooper throughout the last five plus weeks. Her life has been in upheaval of one kind or another for so long, I don't think either of us even remember what our "normal" routine was like. Despite all the change, she has been such a happy and fun girl and brings us so much joy.

Some of her latest antics include...

- Saying "bless" whenever anyone sneezes

- "Feeding" her stuffed animals in her high chair or at her table. She cooks for them in her kitchen, then gives them each something to eat saying "here a go" ("here you go").

- Begging for people to dance to "musie" ("music")

- Singing solos in the car (Twinkle, Twinkle is a favorite).

- Asking to read "stowies" and saying her favorite lines.

- Reading any piece of paper out loud in a very serious tone (with made up words) then announcing "de in!" ("the end!").

- Eating "cancakes" ("pancakes") for breakfast, lunch and dinner.

Playing dress up with scarves

Samuel is now 5 weeks old and 36 weeks gestation. We are told to expect big changes in the next week or so as he gets closer to his due date. He has started nursing, and to date has taken three full feedings and six or seven half feedings by mouth instead of by tube. His progress is slow, moving ahead one day and back the next. His breathing has improved. His oxygen is currently on a 1/4 liter at 21% (room air). He will be weaned down to a 1/10 liter today or tomorrow and from there will go off of oxygen completely. We're cautiously hoping he will be home in the next couple of weeks. I can't wait to stare at this handsome face without any tubes or tape any time of the day or night!

Big sister can't wait to met "Baby Sa-ee"

One Month Old

Samuel Peter is one month old today! Ben and I celebrated by softly singing happy birthday to him this morning. All the excitement wore out our boy who showed very little interest in eating and spent most of the day sleeping in my arms. He now weighs 5 pounds 2 ounces and is more handsome than ever.

This has been by far the longest month of my life. Despite the difficulty, I am so unbelievable grateful for this sweet precious boy who I cannot wait to bring home!

A Day in the Life

With so many little ups and downs in the NICU, it's hard to easily summarize a day. Today was no exception...

2:30 am: My alarm goes off, time to pump. Oh, what fun. Getting up to feed a baby is sooooo much better than waking up to an alarm clock.

6:30 am: Pump again, this time while entertaining Eleanora with stories and songs. When I'm done she happily cries, "All done, milp (milk)!"

7:30 am: Ben and I say "bye-byes" to Eleanora (who after day 2 stopped crying every time we left) and wave to her and Aunt Na-Na (Natalie) as we drive to the hospital.

7:45 am: Greet our beautiful baby boy who is sleeping soundly. His nurse tells us he had a good night and is still on a 1/4 liter of oxygen at about 30% saturation (we breathe 21%).

7:50 am: We wake Samuel by unwrapping him and begining his "cares" which includes changing his diaper (a poopapalooza- all systems are a-go in that department), and taking his temperature. Our nurse then listens to his heart and lungs, feels his belly, and checks his soft spot. She then pulls the curtains in our little corner of the room we share with three other babies and leaves us.

8:00 am: Navigating the wires and tubes, I pick up Sammy and settle into the rocking chair next to his isolette. We stare into each other's eyes for a moment, then he licks his lips and promptly falls asleep with one arm draped over his face. Try as I might, I cannot convince the little stinker to wake up and eat. Boo.

8:15 am: Our nurse pokes her head in and asks the now perfunctory question, "is he eating?". Because the answer (as usual) is no, she warms the stored milk for his tube feeding.

8:20 am: Nurse returns with warmed milk (40 ml) in a syringe which is attached to Samuel's feeding tube. I hold the syringe with one hand and Sam with the other watching the milk flow into the tube that runs from his nose into his stomach.

8:45 am: Samuel's feed has finished flowing from the syringe into his NG tube. I disconnect the syringe and snuggle in for my favorite part of the day...kangaroo care. This is basically skin to skin contact and has proven health benefits for preemies and does wonders for my mental health. Samuel and I kick back in the rocker under a blanket and settle in for a nice mid-morning nap.

10:00 am: Ben wakes me up to let me know it's time to pump again. While I snoozed, he was working diligently on his laptop from an adjacent chair, trying to keep up with his piles of schoolwork and research. Oh, and he's also ordered me breakfast from the hospital cafeteria (a free service provided to parents of NICU babies). He is amazing. He takes such fantastic care of me and our kids, keeps us focused and calm, and guides us with his quiet wisdom when I'm sure I am losing my mind. There is no way I could survive this ordeal without him.

10:45 am: After pumping, grabbing some coffee from the Ronald McDonald House living room (I will no longer mock McDonalds, their free coffee has saved me from the horrors of hospital tar-laden coffee. Thank you Ronald!), and chowing down on my not-too-bad breakfast of yogurt parfait and granola, I head back to Samuel's room. While I was gone, Samuel's nurse turned his oxygen down to 25% because his oxygen saturation rate looked so good.

10:55 am: We start "cares" again. Diaper change, temp check, the usual drill (for the record, Ben does the temp, under Sam's armpit, and I change Sam's diaper. Not a particularly fair trade, but I refer you to the above paragraph about how fantastic Ben is). We again attempt nursing, to which Sam responds with tightly closed lips and eyes and falls fast asleep. Tube feed again.

11:15 am: Samuel's oxygen saturation monitor keeps alarming. The nurse watches for a bit, then decides to turn his oxygen back up to 31%. Boo. I move Samuel to an upright position for more kangaroo care.

11:30 am: Ben is called for rounds with the doctors. No changes are made to his care. Ben asks about continuing to wean his oxygen %. The attending physician tells him we have some time to play with that since he's not very close to going home. Another boo.

11:45 am: I continue to do kangaroo care with Samuel, this time reading aloud to him softly from the book I'm devouring right now, "Reading Lolita in Tehran". He and I are both enthralled. We also listen to the playlist of classical music researched and approved by our musical guru, Aunt Natalie.

12:15 pm: Ben heads home to spend a little time with Eleanora, put her down for her nap, and get some more work done.

12:30 pm: Our nurse informs us that Samuel will be moved from an isolette to an open-air bassinet. He hasn't really needed the isolette for a couple of weeks since he has been maintaining his body temperature successfully. The giant isolette is rolled out and a teeny-tiny bassinet is rolled in (the kind full-term infants are kept in!). We take down the pictures of us and Eleanora as well as the picture she drew for him and attach it to his new bed. We have much more space in our tiny corner of the world.

1:00 pm: Time to pump again. Oh, so very fun.

1:30 pm: I eat my hospital-provided lunch of a grilled chicken sandwich and fruit.

1:45 pm: Cares, attempted nursing (same result as last time), and snuggling.

2:45 pm: I leave the hospital to head home, passing the Sam-watch baton on to Ben who has returned for the early evening shift.

3:00 pm: I arrive home to squeals of, "Hi Mommy!!!!" from sweet Eleanora. We play, read some books and have a snack.

4:00 pm: Time to head to the dairy farm, and I am the cow. Moo.

4:30 - 7:00 pm: With Natalie's amazing help, I get a few things done around the house, feed Eleanora dinner, get her into the tub and pump (again).

7:15 pm: Ben arrives home from the hospital. He reads Eleanora her bedtime stories.

7:30 pm: I spend a couple of extra minutes rocking and humming to Eleanora (who hums along, so sweet).

7:40 pm: Natalie and I hit the door running to get to the hospital before Samuel's 8:00 pm feeding. We make it just in time.

8:00 pm: Another failed attempt at nursing, but very successful snugglefest. Natalie and I spend a long time admiring our sweet, handsome little guy.

9:15 pm: After about a hundred kisses and tearful I love yous, Natalie and I tuck Sammy in and head home. It goes against every fiber of my being to leave my baby behind each night. I play out crazy scenarios in my head where I grab Samuel and hit the door running.

9:30 pm: We are home. As I sit on the couch talking with Ben, I imagine Samuel sleeping softly in the bassinet in our room, instead of miles away in the hospital.

10:00 pm: Time to pump one last time for the day.

10:45 pm: I lay in bed, wondering what tomorrow will bring.

This is a pretty typical day for us these past few weeks. We've settled into a pretty consistent routine, but there's nothing routine about having a baby in the hospital. We just take it one day at a time, hoping for more forward progress than setbacks.

The Latest

Samuel continues to make s-l-o-w and steady progress. He was weaned to a 1/4 liter of oxygen from a 1/2 liter and seems to be tolerating the change well. On the feeding front, he has yet to discover the joy of eating (how is this possible given my family's love of food?!) and is content to let his feeding tube do the work of filling his stomach. As of last night, he weighed 4 pounds 12 ounces.

On the home front, my Mom left yesterday after three weeks of working tirelessly to keep our home clean, organized and well-stocked. She tackled dozens of projects on my "nesting to do list", kept Eleanora happy and fed, and was a constant source of peace, calm and love during this emotionally overwhelming time. We are all feeling the loss of her joyful, bustling presence in the house.

She did leave us in the excellent hands of Natalie who has taken over seamlessly as our live-in babysitter, housekeeper, and cheerleader. We are so thankful.

Friday Update and Pictures

Samuel's progress continues to be slow and steady. He weighed in at 4 lb 10 oz last night. Today he had two episodes of bradycardia while I (Kara) was holding him, which although is typical I will never get used to. Alarms ringing because your baby's heart rate has dropped never ceases to be terrifying. He recovered fairly quickly and on his own from both episodes, which is good. Last night he also had two episodes of near-apneas. A true apnea is defined as 20 seconds without breathing. His episodes were 15 seconds each. All in all, typical behavior for a 34 week gestation preemie.

What is not typical, is how absolutley beautiful this little boy is. Below are a few pictures taken today of our little guy. He is getting bigger everyday and is more handsome than ever.

My First Step

This is my first step outside the loving cocoon of my immediate family and Samuel's competent healthcare professionals. Beyond this very small group of individuals, I've become a complete hermit, unable to articulate my conflicting feelings to even my closest friends. I keep waiting, hoping I'll have a better grasp on my emotions, the reality of my current life, and have everything tied up in a neat little bow before reaching out. These past three weeks have been by far the most overwhelming and emotional of my life. I have felt disbelief, terror, panic, joy, guilt and gratitude, often all in the span of a single hour. I've been indignant with anger, smothered by guilt, overcome with happiness. I struggle to silence the questions that gnaw at the pit of my stomach. Why did this happen? Could I have prevented it? Will our life ever be "normal" again? My brain knows that this is just a short blip compared to the course of our lives, but it feels endless right now. I am just so very tired. Tired of having to choose which of my children to be with, tired of always being away from one of my babies, tired of feeling so helpless and unprepared.

Despite all this, I have so much to be grateful for. Grateful for a beautiful baby boy who takes my breath away with his sweet squeaks and sighs as we snuggle in the NICU. Grateful for a joyful and brave little girl who makes me smile every time I see her. Grateful for a selfless and loving family who have sacrificed their own lives to take care of us during this time of crisis. Grateful for the thoughts, prayers, cards, messages and emails from so many friends and family members sending us love and support.

Today was one of the brighter days. Samuel was visibly stronger, more alert, aware and hungry. His weight is up to 4lb 7 oz, which is a 3 oz gain from yesterday! Eleanora, who has been sick with a fever for the past several days, seems to have turned a corner and is back to her usual busy self.

In order for Samuel to come home, he must meet three criteria for discharge. Any day we move closer to meeting these three goals is a good one. Samuel must:

1. Regulate his body temperature outside of the isolette.

Samuel has this one nailed. He has been in a open-air isolette for nearly a week and his temps have been perfect.

2. Require no breathing support, and have no apneas (stop breathing) or bradycardias (heartrate drops) for 5 days.

Today Samuel was taken off caffeine (used to stimulate breathing) because he has had no apneas for several days! He is still on oxygen via a nasal cannula. His oxygen level at 4:00 pm today (which fluctuates hour by hour according to his vital signs) was 28%. Our goal is room air, which is 21%.

3. Consume all feedings without feeding tube.

We are attempting to nurse during 3-4 feedings a day, and progress is painfully slow. A full feeding is 10 minutes, and our all time record was 4 minutes today. We've been told this is very normal for a preemie, and that most don't figure out how to suck-swallow-breathe until 35 weeks, and boys are even slower (boo!). It's hard not to feel frustrated and discouraged on the days Samuel shows no interest or is too tired to nurse (yesterday was one of those days).

Obviously, we still have some major hurdles to overcome before Samuel is home. No one can tell us how long this will take, it is entirely up to Samuel. In the meantime, we wait and pray and try (and I usually fail) to be patient.

And to those who have sent phone messages, emails, and cards, thank you. I apologize that I haven't responded to any of you, but please know your support and love mean the world to me. Thank you.

Love,

Kara

Update

Sammy had another head ultrasound yesterday, and I was glad I was there to hear the results yesterday evening. The blood in his brain is showing signs of resolving on its own! Thank you so much for all your prayers about this specifically, looks like they are working! They will do another ultrasound in a week, but this is a very good sign. Otherwise he is continuing to progress slowly - 2 steps forward and 1 step back, as they told us it would be in the NICU. We are trying not to think too far ahead, as it gets to be a grind going to the hospital for several hours every day for almost 3 weeks now and counting. I apologize that we haven't posted many pictures; he looks very different from the pictures Natalie posted earlier, so we will post more soon. Thanks as always for your prayers and support!

-Ben

Quick Update

They did another head ultrasound on Monday, and the blood in his brain has yet to resolve itself. So this is something they will continue to monitor. We're still pretty concerned about this, so prayers are welcome! Otherwise he is doing very well breathing and keeping his food down. We are getting to hold him more which is the highlight of my day right now. That's all for now, thanks as always for your prayers and support!

-Ben

Samuel Update

Samuel has had a good couple of days this weekend. Yesterday they took him off all breathing support, and he has been doing fantastic! It's wonderful to be able to see his little face better now that he doesn't have the equipment on his face any longer. We're praying that he continues breathing well on his own so it can stay this way. His jaundice is also getting better, which means he doesn't have to be under any lights at the moment, which means we get to hold him more. He also is eating like a champ (no surprise there) and may be able to try breastfeeding soon. Our biggest concern is still the blood in his brain; they will be doing a head ultrasound on Monday to determine if the blood has begun to resolve on it's own. Thanks again for all of your amazing support, it helps us get through every day at the hospital.

-Ben