The Waiting Game: The Story of Henry Part 6

Remember how two years ago I started writing Henry's birth story? I knew I would finish one day. I just didn't think he would be going on 3 years old when I did.

Well, let me just blame life, in general, for this inexcusable hiatus. In particular...... having two kids, having a very active toddler, job change #3 for Andy (but that is such a good thing, a God story if there ever was one!), and homeschooling for the first time. Oh, and did I mention having two kids?!?

Why now, why today? Why on this sunny March day did I decide to finally park my rear end down in front of the computer and finish the story?

It was a couple of things actually. First, our very good friends just spent 4 days in the ICU with their 21 month old son. He had brain surgery and did amazingly well. We went to visit them in the hospital and the minute I saw my friend, my heart melted. Even though we hadn't gone through the same exact situation, I could instantly read the exhaustion in her face. I could feel the fear and axiety she had been feeling. I had felt that, too.

Also, I've been reading a lot of other preemie birth stories lately. They've inspired me to finish Henry's story.

You can read Parts 1-5 here Henry's Story Part 1, Story of Henry Part 2, The Story of Henry Part 3 ,Story of Henry Part 4, and Story of Henry Part 5 to get caught up or refresh your memory.

There's something about being home. Whether it's after a busy day or a long trip, there is something comforting in seeing familiar faces and places. Except for 2 very short visits, I had not been home in 5 1/2 weeks. There is something so wonderful about sleeping in your own bed, being able to walk to your refrigerator any time you want, even being able to pump in the comfort of your own living room, on your couch, watching TV. (Don't get me wrong. I still hated pumping; but doing it in Santa Rosa and not Roseville, made things a little better!)

Once we were back in Santa Rosa, we still didn't know how long Henry would be in the NICU. He had just reached the 4 pound mark and we knew that he still had some big milestones to reach before he could leave; but we were home.

One of the greatest things about being back in Santa Rosa were that friends and family were able to visit. My parents and oldest sister and brother - in- law had not seen Henry yet. Lily had been in Roseville with us for the past 3 weeks; but she hadn't been allowed in the NICU. Only siblings over 12 had been allowed in. Now that Henry was in the Santa Rosa Kaiser, just 15 minutes from our house, many of our family members were finally able to meet Henry. The meeting I was most excited for was Lily getting to meet her baby brother. So on  July 20th, 2011, Lily got to meet Pickles Bean for the first time. It was love at first sight.

The Santa Rosa NICU was much smaller than Roseville's. Just two babies to a room instead of six.

Her sweet little face is pure joy to me.

That is love!

He was only 4 pounds here!

This is one of my all- time favorite pictures.

Henry is wearing a preemie onesie here. Just a tad bit big!!

Though my parents had been up to see me and bring Lily to visit when I had been on bedrest in the hospital, they were not able to come up when Henry was born. Among all the crazy circumstances of Henry's birth, I never would have guessed what was going on back at home as I was having a baby. At just about the same time I was being rushed into the OR at one o'clock in the morning in Roseville, Andy and Lily were fast asleep in Santa Rosa (though, they were supposed to come up later that day) and my mom was on her way to the hospital. She was having a stroke. She was fine; but couldn't travel. So now, after 3 weeks, my parents were able to meet their grandson.

Now that we were in Santa Rosa, I felt like we had hurdled another milestone. Like I said earlier, I didn't know when we could take Henry home; but I knew we were one step closer. By this time, Andy had started his new job as a dispatcher for the Sonoma County's Sheriff''s office. I was traveling back and forth to the hospital, sometimes with Lily, sometimes alone. We were just waiting.

There are 4 requirements for a preemie baby to come home: Breathe without oxygen, take all feedings by mouth, maintain a stable body temperature, and outgrow A's and B's,
There was one more requirement. And I don't know if this varies from hospital to hospital; but he also had to be at least 5 pounds.

Breathing. Henry only needed oxygen the first few days of his life. Then he breathed completely on his own. Thankfully, he never had to be intubated. The last four things on the list above were what we were waiting on. Every baby is different and there was no definite timetable. So we just waited.

Feeding. Preemies receive gavage feeding (through an NG tube) because they aren't ready to do it themselves. They cannot suck for one. They aren't supposed to be able to do that yet! So in all our newborn pictures, he has a little tube taped to his cheek running through his nose. Henry got fed, every three hours, on the dot. When we got to Santa Rosa though, he did start drinking from a bottle. (Though at this time.... 2 years later, I don't remember exactly how many weeks old he was.) This is one of the first pics I have of him taking a bottle. He was almost 4 weeks old here (or almost 34 weeks in utero). After one feeding by the bottle, he'd be so tired out that the next one would be done by the NG tube. Sometimes, he would start with the bottle and finish with tube because it took so much out of him to suck from the bottle.

Temperature. Like all the other milestones, this is different for every baby. It wasn't anything we could hurry along. There was nothing we could do to make it go faster. Henry was going to hurdle these obstacles in his own time. He had been in an isolet, which is completely contained, so that the temperature could be regulated.  He was not able to keep himself warm yet. Again, he wasn't supposed to. I was supposed to be doing that for him! He was still in an isolet when he came to Santa Rosa.

 This is him in his isolet in Roseville.

One day Andy and I walked into his room and I was stunned. He was in an open crib! I was so suprised and elated. On July 29th, at 4 pounds 11 oz, he was able to maintain his body temperature. We were one step closer to going home!

 Big boy in his open crib.

 Skin to skin time is super important. I would just put his little naked boy under my shirts, even with his cords still hooked up to his monitors.

 About 4 weeks (or 34 weeks in utero) old.

Ok, now here's an interesting little factoid. On July 29th, Henry was a little over 34 1/2 weeks (or 4 weeks old, for reals). He weighed 4 pounds 11 oz. Lily, who was born 4 weeks early (at 36 weeks), was 5 pounds 3 oz. when she was born; but was 4 pounds 11 oz. when she came home from the hospital.

Two thoughts go through my mind. #1 How big would Henry be if he had gone full term?!?! And #2 Why in the world did they let me bring Lily home at 4 pounds 11 oz.? I think she should have been in the NICU!!!

At this point we were waiting for his weight gain, his ability to feed on his own and his A'a and B's.
What are A's and B's? They stand for Apnea and bradycardia. Apnea means a period in which breathing stops. In premature babies, apnea is any pause in breathing that lasts longer than 20 seconds, causing bradycardia, or a drop in the baby’s blood oxygen level.  Which also means a slowed heart rate. (Yup, I googled this part. I understand it, of course, but I have a hard time explaining it.)

In premature babies, apnea and bradycardia often occur together, along with low blood oxygen levels. First, apnea occurs and the baby will stop breathing. Because the baby isn’t breathing, blood oxygen levels will fall. The heart slows down in response to the low blood oxygen levels. Together, apnea and bradycardia are often called “As and Bs” or "spells", and a low blood oxygen level is often called a desaturation or “desat.”

This just happens because the baby is immature. It's brain is immature and can't tell the baby to breathe, so he/she doesn't. Or the muscles aren't strong enough to keep the airways open. Whenever, Henry's levels would drop, the machine he was hooked up to (by about 9 cords) would ding. A nurse would come check on him and he would always start breathing again. The dinging probably jolted him awake.

Oh, the dinging!

Any NICU mommy or daddy know exactly what I'm talking about.

We hate the dinging

You know that when the dinging stops, you are so close to going home. So, when you hear the dinging, you know you'll be staying in the NICU for at least 5 more days. (Henry had to go 5 days, without any As or Bs spells. AKA= No dinging!)

 Starting to wake up a little. Opening his eyes a lot more.

No one imagines the first few weeks of life with your brand new precious baby to be like this. You never dream that you'll have to untangle a mess of chords to just hold your baby. Or that every night, you'll have to leave your baby, in a hospital room, while you go back to your room or travel home for the night.

You feel, quite honestly, a little jipped. It seems unfair and it makes your heart hurt.

But the amazing thing is you have these tremendous victories that many parents take for granted. It gives you such a different perspective. You see life at it's most fragile. It's amazing and it's beautiful.

 I started writing Henry's story for a few reasons: So I wouldn't forget, so Henry would know one day, so that others could see how great and good God is.

Now, two years later, I'm still writing for those reasons. I've also come to realize how sharing your story can help others. When we keep the amazing details of our life to ourselves, we may be missing an opportunity to encourage someone who is going through the same thing. Maybe another mom, right now, is sitting in the NICU wondering when her baby will come home. Maybe she'll stumble across my blog and be encouraged. I don't know.

The next post will be my last about this particular chapter in my life. Yes, it has a good ending.

Henry Christopher, here's some pictures of some your special visitors. (Not all of them.)

 Papa and Mimi.

 This guy is not a visitor, but I like how happy your daddy looks.

 My sister, Doreen. My kids call her Nana.

 Uncle Pete.

Auntie Clue!!

*My other sister and brother - in - law had flown from Colorado to see us the week Henry was born. I think I was a little out of it still because I have no pictures!