With all of the needs our little guy has had and how many things are yet to come with his care, I have really just prepared myself for the worst so that when it goes better it is a pleasant surprise. Sad that I've become that way but I think that's what the NICU does to a mom. Anything that changes while in the NICU is treated as if it were the worst case scenario until they eliminate all other possibilities and can identify exactly what the issue is... or so it has been with Caleb.

This week we had our first appointment with the Cardiologist. They weighed him (a whopping 6 lbs 2 oz!), measured him (18 inches long), and hooked him up with all sorts of stickers and wires for his first EKG.

He handled it like a champ- as long as he had his binky.

We were originally under the assumption from the NICU that he had two holes in his heart when he was born- a PDA (Patent Ductus Arteriosus), which is extremely common in preemies and usually closes on it's own, and a VSD (Ventricular Septal Defect) which is a hole in the wall of the ventricles of the heart. Well, when the Doctor came in, she drew a picture of a VSD as expected and an ASD (Atrial Septal Defect). She mentioned nothing of the PDA. She said that the ASD is the size of a pen point (literally) and is on it's way to closing; and the VSD is so small that he is not going to need any kind of corrective surgery. It is very likely that the VSD will also close on it's own and he'll live a normal happy life.

When she got done explaining it I had to clarify and say, "So, he's not going to need heart surgery?" She confirmed in the negative. Oh, what a happy moment!! I was ready for heart surgery!... I was ready for heart surgery and everything involved with it!

Basically it all boils down to the fact that hundreds of thousands of prayers have echoed the heavens on behalf of our boy and continue to do so. Not only by his parents, but by all of the family friends and loved ones. These prayers were heard and these prayers were answered. How humbled, blessed and grateful we are.

The Journey: Part 2, or "How I Got Sick at the Hospital"

They said we'd get "NICU-itis" before we were through with Caleb's extended hospital stay.  At the time, I wasn't sure I could picture what this terrible-sounding condition would feel like, or for that matter, why I could catch anything threatening in a hospital.  That's like hearing about a man making the news for getting locked inside a bakery and starving to death, right?  Then again, NICU-itis couldn't be that bad, judging by the way every nurse who warned us about it smiled as the words came out. 

The three of us faced a gauntlet of challenges in the following two months, any of which might have weakened us to the point of contracting this mysterious malady.  The first and heaviest for me was the range of fears and emotions we went through when our "girl" became a "hmm", and then a "we don't know" and finally, on the wings of a saint named Doctor Wallis, the news that we had a very normal and completely treatable little boy. 

8/22/12 - Forever grateful for modern medicine

 Then came the rest of the tests: eye exams, blood draws, PICC lines, karyotype tests, cranial ultrasounds, and an anxious, prayer-filled wait for two holes in Caleb's heart to resolve themselves.  The twenty minute drive from Capitol Hill to Murray became almost automatic for Kaylee, especially when the physicians enlisted her in a feeding regimen twice a day.  The hour-long wait for Kaylee to come home each night became almost automatic for me (who really knows, until one finds one's soul mate, how hard it can be to fall asleep alone at night?).  Then the bills started coming in the mail, and I wondered whether we'd have to take out a mortgage on our baby.  Through it all, we held out strong against NICU-itis. 

8/24/12 - Angel Ruby let us do "kangaroo care"

Of course, there were so many little rays of light scattered throughout the long days of limbo.  Caleb's grandmothers and aunts came to the rescue early with food, mops, and so much encouragement.  The Capitol Hill 1st Ward showed its charity in spades as sisters came with dinners and drove Kaylee to the hospital before she could take herself.  Ward members shouldered the burdens of our callings for weeks.  So many cheered on the little superman, and many prayers were sent up on our behalf.  Dear Margaret Bury is still praying for him every day, she assures us every chance she gets.  And Caleb charmed nurses and wowed doctors with his steady growth and development.  A handful of angel nurses took a particular interest in his well-being and would stop by even when they were not assigned to his bed, just to check in.  They went out of their way to help mom and baby bond early and often; they did so much to explain terms and clarify confusing signals from so many caregivers; and they brought peace of mind to a couple of anxious new parents. 

 

* * *

One day, about five weeks in, Kaylee went to visit as usual and found an unusually passive little boy.  His eyes hardly opened at her voice and he took the armpit thermometer without a fuss; but when he didn't squawk or bicycle-kick his way through getting his pants clean, we knew there was something wrong.  Doctors threw around words like "anemia" and "meningitis" and we were genuinely scared for the third time in his life.  Bishop Garbett and I gave him a blessing, and oh! we prayed that night.  Somewhere, someone figured we passed the test, because within 4 days the alert was lowered to "Rhinovirus", and while the whole corner of the NICU pod was on glove-and-gown lockdown thereafter, at least we knew our boy would get better.

Yes, even after all this we thought we were doing rather well and that maybe we had escaped the NICU-itis.

All these thoughts were playing in and out of my head on the night of October 12.  We had just said goodbye to Bryan, Karen, and Jackson, who traded us a box of orange-frosted sugar cookies for a long-overdue visit with Caleb.  We had been shown to our "stay-in" room, which looked like a much more antiseptic Days Inn.  Later they wheeled Caleb's hospital bed into our room, largely unplugged and ready for his first and only test-run.  It was a lot to handle for our still-unwell little boy, and the three of us endured a very long night in our presidential suite.  Still, the elation of being so close to going home eased the weight of exhaustion, and by early morning he had been wheeled back to his room and we were left to assume we had passed the test. 

10/13/12 - A different sort of day: sunrise over Twin Peaks

That beautiful Saturday morning, as I drove to the fairgrounds to pick up our veggie co-op and back to the hospital, the dawn sky seemed to reflect the relief I felt.  But oh, the weight that settled on me as I walked back into the Gardner Women's Center at 7:30.  I stopped off at the suite to hear the plans (of which there were none concrete), then was sent upstairs to the cafeteria for breakfast.  As I walked that basement hallway, punched my code, and climbed into the elevator up to the main level, my back hit the elevator wall and the words came out loud: I... never... want... to... see... this place... again.

So, that's what it feels like.  I don't remember what I got for breakfast (oatmeal, maybe?), or how I found my way back downstairs.  The admins and nurses were suddenly strangers to me, rather cold and business-like.  Even the sweet grandmother-nurse who handled our discharge was no longer our friend, because she stood between my family and freedom.

So, I guess I finally caught NICU-itis on Caleb's last day.  Don't worry folks!  It's not contagious.  I can even say that a smile crosses my face when I think of Building 7 with its roundabout, and the long basement hallway to the door with the camera, and the little room with a plastic tub for a bed that was once labeled "Gwilliam Baby Boy" but is now empty. 

10/13/12 - could be a scene from Shawshank Redemption...

Yeah, I can smile because even though nothing happened as we expected, our family is home together at last and all is well.

 Peace out, IMC!  And look out, you big bad world... Caleb Taylor Gwilliam is free!

10/13/12 - Leaving for the last time, this time with our missing piece

* * *

8/27/12 - They say preemies are most comfortable when they're confined?

9/2/12 - "Guess what, mom?  I grew this much today!"

10/13/12 - Mr. Bones is finally getting ready to hit the road

What a Journey - Part 1

Well, life is ever-changing and exciting to say the least!! Time to share a little bit of the adventures we've had over the last few weeks... Or in other words, tell you about the birth of our little Caleb.

On friday the 17th of August I went in to have a regular check-up at the OB. When the Dr saw how high my blood pressure was, she sent me up to the hospital to have some tests done and to be monitored for a while. Well that turned into being admitted and transferred to another hospital because it was possible that I would be delivering early (10 weeks early to be exact) and the hospital I was originally at wasn't equipped to handle such a tiny baby.

Then, thanks to medicine and great doctors, things started to stabilize and by sunday night it was starting to look like I'd be going home! So they were going to keep me for another 24 hours and then send me home on bed rest. But my body wouldn't have it. By 4 am monday morning I was preeclamptic and in serious pain. The baby (whom we still thought was going to be baby Ava) was breech and that's when they decided that emergency c-section was the only way to go.

My poor, sweet husband was informed that I had gotten sick again but they failed to mention that I was getting prepped for surgery!! So after a while, the OR nurse called him and told him of the real situation and he rushed down. Once he walked in the door they suited him up and wheeled us off to the OR.

At 9:02 we were surprised with a little boy at 2 lbs 10 oz. The first few days were a roller coaster ride as they diagnosed him with a number of little premie conditions including holes in his heart, and cysts in his brain. But he's a fighter. He now torments the nurses as he plays Houdini and slides out of his diapers, pulls the tubes out of his nose, and gets himself so tangled in his tubes and wires that we all wonder how he does it. He has also won the nurses with his sweet gaze and calm temperament. We even have some nurses stop in to visit him that aren't even taking care of him that day. He's quite the Romeo.

As of today he's up to 2 lbs 14 oz and growing. The prayers and thoughts of endless friends and loved ones have really pulled us through this experience and we are so grateful. We can't thank our Heavenly Father enough for sending us this blessing.

His first few hours.

 

Saying hi to mom for the first time, just out of the OR.

It almost looks like he's trying to roll over to me!

Can I help you?

After only a few days, off the C-pap machine and down to regular oxygen tubes! Such a stud!

Rewind...

So I'm still trying to decide how far back I want to rewind. Jake had mentioned something about telling our story; you know, from the beginning. But I feel like that might be something that can be filled in with tidbits of other fun info as we go.

So, I'll start with a funny story from earlier this week.

We live in a small basement apartment that was built in the 1920's so let's just say that the insulation and 'soundproofing' is less-than effective. We hear everything from the upstairs neighbors' weekly fights, to the sound of the claws on their two boston terriers scratching across the floor. It's not bad actually until it hits about 2:30 am and that's when mamma bear comes out of her cave. I already have a hard time sleeping with my belly getting bigger, the baby moving more, going to the bathroom constantly, etc.; so to add to that is extremely unwise. You get the point. ;)

So I awoke the other night to the sound of a rustling sort of crunchy noise that was coming from the closet. I laid there to see if I was dreaming or if it was coming from upstairs and it was too close for either. So I woke up the poor husband and made him go see what it was.

Well, it wasn't in the closet. It was in the windowsill near the closet door. It was a tiny little door mouse that had fallen in and was jumping with all it's little might to get back out, crunching the leaves on his way back down. Now, normally I'm creeped out by that sort of thing but when I saw his round little head, his round little body and his round little ears poking up I kinda gushed for a second!! He was maybe 2 inches big and he was trying so hard to jump out and could only get about 3/4 of the way up. It was so cute in the most creepy way!!!

So my brave husband went out and put some long sticks for him to climb up to get out. By this point I was already losing consciousness again and was back in bed and by the time Jake got back to the window inside the house, the little guy was gone. Smart little thing! Hopefully he ran far away from the house. Otherwise we'll be dealing with a not-so-cute problem.

True Story!!