Life…in waiting.

Guest post from my husband. I love you, my precious!
(For my version of the story click here)

Life…in waiting (or Luke’s story as told by his daddy)

The nameplate one of the night nurses made for him. We loved the nurses!! Every single one of them took care of him just like we would!

Throughout our stay at the hospital with Luke, I typed notes on my Kindle while Amanda slept so I could (eventually) write in my journal about all that happened with my little family during this stressful time. My intent was to keep it all private, because some of it just brings back tears I don’t ever care to cry again, but after Amanda found out I was doing it, she insisted I tell everyone my view of the story…the Daddy’s story.  While I completely understand there were children in the NICU in much, much worse shape than my little boy was, that understanding didn’t help calm my fears and worries about the little boy I just started calling my son. So, here is Luke’s story—from his Daddy’s point of view.

I thank everyone for their constant prayers and support for us during this past week. My family thanks you and loves you!

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Luke is here!  

7 lbs. 9 oz. 20in….and a LOT of red dots!

Our little boy was born on Friday, May 6, 2011, 1:57 pm. Amanda and I were on cloud nine. We already have a beautiful little 2 1/2 year old girl at home waiting on us and now, in just a couple of days, we would be bringing her a baby brother to enjoy. We did just that…but not as quick as we planned.

The news

After a fantastic night at the hospital, we fully expected to be on our way home soon after a few housekeeping procedures, but we received a visit from the pediatrician on–call that day. She came in and sat down on the bed next to Amanda and proceeded to tell us Luke’s blood work came back abnormal…twice. She then started explaining to us how his platelet levels were extremely too low and that he would need medical attention they couldn’t provide him. (Insert panic mode here). They had contacted a neonatologist (I sure hope I spelled that right) at the Methodist NICU and were already preparing paper work to discharge Amanda and preparing Luke for transport to Dallas (panic mode increased).

WHAT?! Transport? That’s for babies in bad shape!! That’s not for Luke!… Well, unfortunately, Mr. J, yes, it is.

Palates…no, palettes…no, platters …no…huh?

According to the articles and research I’ve looked at online, (don’t you just love the Internet? In five minutes, I know more about platelets than I ever cared to know), a healthy count of platelets for most folks is in the range of 150,000-400,000 micro-liters per (blah, blah, scientific term) of blood. Luke only had 19,000. Remember that perfect night we had? Well, I forgot to mention he also had tiny red dots all over his little body (now I know they are called petechiae) and they were caused by small hemorrhages throughout his body.  Well, platelets help with clotting and if your platelets are too low, you can’t clot correctly and it could lead to internal bleeding else where, such as the brain. I actually didn’t know all of this info at the time. I just knew Luke was in bad shape and we weren’t going home just yet.

The transport stretcher

 
The transport to Methodist. The transport team was fantastic! Good people.

“I don’t want to make these phone calls.” I’ll probably remember that sentence forever, because that’s exactly what I said after the doctor walked out. I looked at Amanda, she looked at Luke, and we both starting crying. The only thing I knew to do right then was pray. I prayed for God’s healing over my son right then and there. After we prayed and cried for a minute or so, the doctor walked back in and gave Amanda a big hug and told her he’s going to be fine, but not if we stay here.  The next hour is a blur in my memory because between making phone calls, getting more clothes, a bigger bag, getting “O” situated for a day or two, and putting myself into worry-overdrive, I don’t remember much. But I do remember being back at the hospital and the nurse coming by, telling us he’s ready, and they would be bringing him by so we could see him before they left. Now, I don’t know what I was expecting them to transport him in, because it wasn’t like they were just going to throw him in the passenger seat and have a joyous ride up to Methodist, but what I saw next will be forever burned in my mind. They had him strapped down to a little bed on a stretcher, covered by a plastic box, with more wires, monitors, and medical gizmos than you can imagine. That’s when it broke us. Amanda and I both lost it right there in the hallway in front of a bunch of nurses, medics, and family members. This stuff is for sick babies…not our baby. The next thing you know, he’s loaded up and leaving-without either one of us. All we could do was pray, cry, and hold on as my father-in-law made that car fly to Dallas.

The first hour and a half (aka: Torture)

The transport team told us before they left it would take a little bit before we could see him because they had to get him in the NICU and get situated. Fair enough. What they failed to mention was that it would take an HOUR AND A HALF! As soon as we got there, we flew up to the 3rd floor. My poor honey. She had just had a baby and here we were, racing to get to the NICU.

We get to the NICU doors, press the button – took FOREVER for the buzzer to buzz and let us in – run down the hall only to be greeted by a wonderful (albeit gruff) secretary who informed us that it would be an hour or so before we could see him because they had to do blood work and get him “hooked up”. So, we waited. Longest hour and a half of my life. Wait…Hooked up!?!? Hooked up to what?

Cords, monitors, & I.V.’s-Oh my!

Wires, wires, and more wires!

After a long wait, and a 3-minute scrub (the first of many), we finally got to see him, but seeing him with all the wires and monitors broke us again. Even though they explained how it was better and safer for babies, I still could not get over the fact my child an I.V. coming out of his head. Then the doctor came. He explained that Luke would be receiving a platelet transfusion that would (hopefully) boost his platelet count where it needed to be. Next up…more waiting.

Our TV we watched for 5 days. Not quite as fun as Price is Right.

After a long wait, and a trip to El Phoenix with 14 family members, we made it back to the to the NICU to hear some good news. We received some good news and not so good news. The transfusion went wonderfully, but his numbers had only jumped up 20,000 more, which was still nowhere close to where they needed to be. Over the next few days, they would doing urine cultures and a head sonogram to check for viruses and internal bleeding, respectfully. So, what would we for the next couple of days? You guessed it. WAIT! But, we were not alone, because we always had family there with us. We also got to meet someone wonderful people…every 12 hours.

Hello, my name is [insert nurse name]

We are forever grateful to the wonderful nurses and doctors who took care of our little boy.

I just told someone today that I hope I never have to be in the NICU again, but if I did, I would head back to Methodist in a heartbeat. Every 12 hours we were met with a new face, but every nurse Luke had treated him just a good as the nurse before. We never had the same nurse twice, but we always felt comfortable every time we went down there (which was pretty often, as you’ll soon find out.) I can’t sing the praises loud enough of the wonderful job they did! Not only were they knowledgeable about what was going on, they were compassionate to Amanda, who had been on an emotional roller coaster.

2,5,8,11…who do we appreciate!!-…Wait…that doesn’t rhyme.

 My wonderful family!

Speaking of my wonderful wife, Amanda, all of the nurses, not just ours, kept calling her Supermom and Rockstar Mom. Now, I’m not sure what kind of parents they are used to having in the NICU due to the fact that most of the children we saw had been there for quite some time and will be there long after us, but most of the parents came only once a day, once a week, or not at all, due to the fact they either lived far away, had to go to work, etc., etc. But us?? We were there AT LEAST every 2:00, 5:00, 8:00, and 11:00.

You see Amanda had planned on nursing Luke, just like she did for “O”, and she was not going to let a low platelet count stop her. My poor honey, who had just had a baby, mind you, would get up from sleeping or visiting, walk down this long corridor, wait on the elevator, walk down the long corridor to the NICU, do the required 3-minute scrub, gown up, and go feed her baby. Every…3…hours. A.M. and P.M. without fail. Amanda finally asked one of the nurses why they kept calling her Supermom and the nurse looked at her and said, “Honey, in all my years in the NICU, I’ve never seen a mom nurse her baby ‘round the clock like you have. It takes someone strong to do that.” She hit the nail on the head, because my honey was, and still is, a strong mother.

$1.00, $1.10, $1.25, $1.89…sold! (unfortunately)

Essentials in a hospital…well, kind of.

Another thing that was so good about our time was we never had to leave to go get anything. Between the full-blown cafeteria, which served Dunkin’ Donuts coffee by the way (man, now I want some coffee), the City View Café, vending machines, and gift shop, we were set…but MAN, do they love there stuff because their prices reflected it! While I wasn’t thrilled to have to pay $1.89 for coffee every, single time (no refills, of course!) or $3.00 for a fruit and yogurt parfait, I was glad those amenities were there! I am even more thankful for the money family and friends gave to help us with our food cost while we stayed at the hospital and waited for the good news that Luke could come home! Speaking of waiting…

Life…in waiting

NICU waiting…and that’s just what we did…wait….and wait.

Have I mentioned that we had to wait…A LOT!?  The waiting did us in almost as much as the circumstance itself! Luckily, we weren’t alone. The first night we were there we had, if I’m not mistaken, 14 family members in the NICU waiting room!! When we rounded the corner coming back from seeing Luke, tears welled up in my eyes when I saw all of the people who had come to be with us during this time. I’ve always appreciated and loved both sides of our families, but I don’t think I’ve ever appreciated them as much as I did that night. I love all of you very much!

There was one night, though, where the waiting finally brought rivers of tears to our pillows. We had just seen “O”. my in-laws had brought her to see us and she was wound up like a 9-day-clock. Not bad, though, just a 2-year-old being a 2-year-old. After we visited with them and had supper, they headed back home while we went back to see Luke before trying to get some sleep. We went back to our room and crashed on the bed. We had just found out they were going to do a head sonogram to check for internal bleeding earlier that day, our daughter missed us and we missed her, the feedings were wearing us down, and we were flat out exhausted. We just cried. We cried because we were scared of what was to come. We cried because our daughter’s little world was up side down and we couldn’t fix it. We cried because…well, because of everything. Finally, I spoke up and told Amanda the doctors and nurses were taking good care of Luke, her parents were taking care of “O”, and we had a place to stay close by. Then, my wife, my sweet and wonderful wife, said something that will stick with me for a long time. She said, “Yeah, but it’s not home. It won’t be right until we are all home.” Oh, how I wanted to make that happen so bad, but I couldn’t. Not then, anyways. I couldn’t fix it. All I could do was to wait.

Headed Home!

Discharged: I’ve never been so happy to hear that word in all my life! Over the course of a few days, Luke’s platelet count steadily climbed from 48,000 all the way to 125,000 and they were sending us home. Looking back over the last week, I realize God had his healing hand on my son. There was nothing I could do but pray and put my trust in Him to take care of my son.

First car ride (that didn’t involve an ambulance.)

You see, after the transfusion, his numbers didn’t go up like they should have. The only thing the doctors did from then on was monitor, scan, and check. Nothing else was given to him. Now, you might say that it took time for the platelets to get through his system. I’ll buy that. But one thing I left out earlier was this: The doctors still have no explanation as to why they were low in the first place and, after his numbers went up from the transfusion, they also dropped. You see, most children who are born with low platelets also have some sort of internal bleeding or damage elsewhere in the body. Luke doesn’t. I truly appreciate all the work the doctors and nurses did for my little boy, but I believe with every fiber of my being that God healed my son. Don’t believe that’s true? I have a perfectly healthy 1-week-old sleeping right beside me to prove it. To God be the glory forever and ever-amen.