Heart of Beckett

So I return after multiple hours of distracting work to find Leah standing at Beckett’s bedside saying “I’ve pretty much been here trying to console him since you left”. Apparently the Doctor just kept increasing his fentanyl….which really wasn’t helping.

So at this point Leah determined that this has to be more of irritability than pain. We have explained this theory to both his day-shift nurse and now his night-shift nurse and are hoping this gets communicated to his Doctor (as we would prefer him to not be on as high of a dose of pain meds that we will only have to eventually wean him off of later, but rather give him sedation to push him past this stage of irritability).

As I’m sitting here in his room the nurse felt that he needed to get suctioned (where they stick a tube down the tube in his throat and suction out any additional and undesirable fluid). Well, I am currently recovering from my heart beating out of my chest once again as his oxygen level plummeted and his heart rate dropped as low as 60 (that’s really low). His body is just so fragile that my mind starts to run away from me to some very dark thoughts (that I’d rather not explain, but I’m sure you can assume).

Sooo, there you have it. That was our day. Leah is contemplating going back to work tomorrow (Saturday) rather than Sunday because of a large snow storm forecasted to be here by then. That was unexpected for the both of us, and definitely something Leah is anxious about.

With all that being said, I’m not sure what to ask for you to keep in mind and pray for….but I know there is plenty there to decipher through (unfortunately). I say all that (and lay ourselves transparent) because we know that so many of you will be praying for us (and now all the more specifically).

A quick reminder, we really do strive hard to read every comment and post on both Facebook and Beckett’s website….so thank you all for the encouragement. We greatly appreciate it! And to everyone who continues to give to us financially, I’m really kind of at a loss for words. “Thank you” doesn’t seem to really cut it….but, “Thank you!”. We are so humbled and so very thankful.

Goodnight everyone!

#GoBeckett!
#ODAAT

Hope everyone has seen the “Gerber Baby 2.0” concept….I think he definitely pulls it off, don’t you?! It’s kinda funny actually, we were doin’ a lil research on the Gerber Baby for fun and discovered that they did a contest last year for a “new” Gerber Baby. I put new in quotations because it wasn’t to replace the iconic image, but rather an opportunity for the baby who won to be the “face-of-Gerber” for a year with commercials, promotional stuff, etc. Beckett could have totally won that! 😉
(side-note: the winner got $50,000)

It’s been another confusing day. Beckett continued to receive his dose(s) of morphine when needed. He really has only gotten the rescue doses once every 10-12 hours…but it’s just seemed sooo much more frequent than that. On top of that, he had to have his oxygen support bumped up higher and higher throughout the day. It got as high as 65 (which is high), and that was quite discouraging. They’ve done an x-ray and ultrasound to not necessarily find much. He still has some fluid around his lungs which suspiciously isn’t draining out of his chest tube. He still has a little atelectasis (which makes his breathing more difficult), but it isn’t that severe to have this kind of impact. They gave him an extra dose of lasix (which helps remove fluid), and that seems to be helping some.

Sooo, I just sit here (when I’m not researching and writing a paper) and stew a nasty pot of frustration, grief, stress, anxiety, impatience, confusion and helplessness (to name a few) while I attempt to be strong for Leah and especially for Beckett. It’s difficult because I want to be true to my emotions yet strong for my family. I just want so badly to relieve him of this, but it’s as if God is simply and quietly saying, “wait”.

Ironically (if you read yesterday’s post along with the past few), part of our devotions this morning began with the phrase “Trust Me one day at a time” (ODAAT). It then went on to say, “Trust is not a natural response, especially for those who have been deeply wounded…Don’t let your need to understand distract you from My Presence.” Yet another humbling reminder once again.

My son is in my God’s hands, and nobody else’s. He’s taking care of him, and though anxiety is a natural response, the hard truth is that some of that anxiety stems from a lack of faith on my part. Not necessarily faith that everything will or won’t work out in “my favor”, but rather a lack of faith in his control, love, omnipotence and perfect sovereign plan. I really have no intentions to get into a theological tiff, so I will simply say that I do believe in a capital “G” God who loves my son more than I…..and he’s present…..and he is in control.

#GoBeckett!
#ODAAT

Beckett was quite irritable off-n-on throughout the day. They decided to give him another “rescue dose” of morphine this morning. So heading into the afternoon I went down to the hospital lobby as Leah hung out in Beckett’s room with her family. She always loves their company so much, it just brings a smile to my face when I think about how happy her family makes her. I came back up to Beckett’s room as dinner time(ish) was approaching, and walked into the room with Beckett crying. Leah looked at me and said, “He just started doing this…I promise”. Sooo, for the next 1/2 hour we worked diligently on calming him down. He’d settle down for a bit but then to just burst into a hysterical cry. The docs and nurses are fairly convinced its “just” withdrawals. Though that is somewhat comforting, it’s also quite heart-breaking. I hate to see my son cry. He’s already been through enough, ya know? I just want him to be happy and experience a life outside of this silly little hospital room.

So here we wait, just sitting in his room with the lights off. His nurse, Kathy, just informed us that she needed to give him another “rescue dose” of morphine. So, he’s actually knocked out cold right now. These days are getting longer and longer. We remember saying things like, “We’ll be BACK to the hospital as early as possibly April and as late as July for his 2nd surgery.” Yup, it’s now March 16th…and we are still here…and AT LEAST a couple weeks away from talking about the “H” word again (“Home”…..we are cautious to throw that word around very much anymore).

Whelp, that’s about it. They are also increasing how frequent (not the dosage) they administer his methadone to help get him through this phase of withdrawal.

Thanks everyone for hanging in there. Even though we are clearly “still here”, we know that there are soooo many of you guys “still there” as much “by our side” as you can be. And for that, we are so thankful. I mean, we’ve only had Beckett’s website live for about a month and a half now, and we are nearly up to 35,000 hits already. That’s crazy! So again, thank you everyone!

#GoBeckett!

I cannot believe it’s already March 15th. Leah and I were just talking at dinner that we’ve outlasted all our friends we’ve met since being here. Unfortunately (and that isn’t even the appropriate word), one of the babies we mentioned a week ago or so passed away earlier today. It was gut-wrenching and heart-wrenching to watch. The baby was just a few doors down from us, and it was quite sobering to watch them grieve, unpack the room, and even see a funeral director show up. For me, it really REALLY put everything into perspective. We had an opportunity to speak with the mom before she left, and she whispered into Leah’s ear as they hugged, “cherish it”. Please pray for this family, as this is a pain they are experiencing that many of us will never know. I cannot imagine how difficult that has to be.

Beckett has had an “ok” day. It was actually a little disheartening for me because Leah had been telling me throughout these past few days while I was back at home how peaceful and happy he’s been. It wasn’t an awful day, but Beckett did throw up (which I know happens with babies, but Beckett doesn’t typically throw up twice unless something is wrong). Then as the day progressed he was quite irritable. Leah even got to hold him again for the first time in nearly a week. Though he slept great in her arms, she kept saying ‘he just doesn’t seem comfortable’. They did turn off his fentanyl today (which is a pain med), so he might be withdrawing some from that….but it’s just been a troubling day. As I type, they are giving him what’s referred to as a ‘rescue dose’ of morphine. He’s just breathing heavy and his heart rate is on the higher side. This should help him, but is clearly not a preferred situation.

Soooo, please continue to pray for Beckett (as I know many of you are). We are very eager to come home, but certainly want to make sure he’s “ok” to do so before that happens.

Pray for Leah. She has been a rock throughout all of this, but it can get exhausting day-in and day-out here in a hospital. Just pray for strength, joy and peace…as she deserves all of that and more.

And lastly (or should I say, selfishly), please pray for me. I have my days of strength, but more frequently than I’d like I’ve experienced an uncomfortable amount of weakness.
2 Corinthians 12:9 – ‘And he said unto me, My grace is sufficient for thee: for my strength is made perfect in weakness. Most gladly therefore will I rather glory in my infirmities, that the power of Christ may rest upon me.’ Paul is such a punk, huh? No, I’m clearly just kidding. This verse is just so difficult to live out. But the thing I do know is that it’s true. I AM a living testimony of this, and yet I still struggle to consistently embody that truth. And yet, I resonate with Paul once again in 1 Timothy when he says, ‘I am the worst sinner of all.’ Boy, do I not have it altogether….but I know what I do have, His grace. I rewind back to 2 Corinthians 12:9 again that ‘My grace is sufficient for thee’.
– Thank you Jesus
– One day at a time
– Cherishing all that I have.
As I’ve said before, life is a precious gift…do not only cherish your own (staying reminded of Philippians 1:21), but cherish your children, cherish one another, cherish your spouse, cherish your family, and cherish your friends. And most of all, cherish your salvation found only in Christ. His grace is sufficient.

#GoBeckett