Beckett has been in a great mood today. He really has a surprising amount of endurance when it comes to him playing in his bed. Just think what it’ll be like when he’s runnin’ around! However, with that energy there is always the inevitable “running out of gas”. Well, these events have typically been ending bad these past few days (maybe weeks). However, we caught it this afternoon. When it finally came for him to sleep (you can just tell when he’s “done”), he just fought and fought and fought. But before it got out of control, he somehow settled down and fell asleep (and has been sleeping for a while now).
I posted on Facebook earlier today that I finally feel like I have the time to do some “summer reading”. So I spent the afternoon reading a lil and just relaxing (in Beckett’s hospital room). We did have some NICU nurses visit again (which is always a welcomed treat), but I told them that as much as we enjoy seeing them, that in the near future we are going to have to welcome them to our house….cause that is where I am hoping and fully expecting to be (again) soon. On that note: if I had to guess (at this rate), we probably won’t be home for at least another week; that’s disheartening, but at least it’s better than a month!
Leah had to work once again today, but will be back again tomorrow. She’s so amazing. I applaud her tenacity to keep working, as I know she is truly doing it for us…her family. I cannot wait for the day to relieve her of the stress of “needing” to work like she is. She still may work, but I’m ready to get back to working full-time again….but all in due time. Didn’t I just post recently something about staying present in our current situation? 😉 Yeah….an everyday battle! One day at a time.
Whelp, here I am again…in a hospital…just me and Beckett. Leah had to work again this weekend. In fact, we’ve been forewarned by her job that she cannot have any more days off. :-\ They’ve been really gracious throughout this entire journey, but I guess they have to draw-the-line eventually.
As I walked into Beckett’s room this morning, he was sleeping! That’s awesome! He hasn’t been sleeping the greatest lately. However, as I walked in I noticed that his poor ear was all bent over from the cannula and his arm-splint (helping to keep his IV in his arm) had slid off. So I went and found his nurse. She didn’t mean to, but in fixing those few issues, she woke him up. Incidentally, he then stayed awake….what seemed like all day until he had a horrible meltdown in the late afternoon. We don’t like these kind of meltdowns because he literally wore himself out (which is always scary). He did hold his sats quite well during the meltdown, which inspired (after my subtle hints… #inception ;-)) to start weaning him off some of his oxygen support machines. I think that has been one of my struggles this go-around. My attitude. I can keep my composure, but I feel like I’ve had a much shorter fuse since we re-arrived here at Riley. I think it stems from being back so soon, it spiraling into what it has, the perceived rate-of-progress, the lack of sleep….it’s just all very frustrating. I’ve caught myself telling Leah (certainly out of weakness) that “I’m done with this!” Yeah, embarrassing, huh? I think Leah initially took it as me “quitting”, which is definitely not what I meant. I was merely expressing my desire for this to be done with so we can just go home and try to be a “normal family”, or at the very least, live life outside of a hospital over an hour from our house (but however you “slice” it, it still doesn’t sound very good, does it?). I spent some amplle time late last night, and even this morning wrestling with God on “motives” and “attitude”. I’m certainly not perfect, and at least I know it. But I can struggle with pride and putting myself first. I’ve had to actively accept God’s grace over my life and my sin once again. This is a daily process for me, and is still fitting of the mantra “one day at a time”.
As I’m wrestling with patience, pride, motives and idolatry through this particular leg of our journey, I invite you to do the same. Why do you do the nice things you do? What are your motives? Who do you truly worship? Look deep. Is your pursuit of pleasure, personal satisfaction and joy surprisingly first in your life? Sit back, talk it through with God, and lastly…fully bask in his grace. It’s a beautiful thing. Everyday I try to better understand his grace, and what’s awesome is that everyday I have so much more to learn. Lamentations 3:22-23 says, “The steadfast love of the Lord never ceases; his mercies never come to an end; they are new every morning; great is your faithfulness.”
We hope to be home soon….but until then, we ask for prayer to stay present in our current situation and trust that God is still in control and has this (and has US) right where we need to be.
So last night, after I had already posted the update, Beckett began to slowly increase his blood pressure. He seemed to be ok, but we certainly didn’t like it. The doctor assured us that he had some ideas he was going to try overnight, and that he’s pretty convinced he can get it to level out some.
By morning, his blood pressures seemed to normalize. But now we had a new issue. Before I head into that, we were greeted with information that Beckett had a really interesting desatting moment this morning where he dropped into the 20s! That’s not good. But the nurse said that he did bounce back pretty quickly. But the new issue was the continued dropped heart beats in addition to some P.A.C.s….sooo, multiple arrhythmia issues. They didn’t seem overly concerned, but again…it’s not ideal.
Furthermore, he hasn’t slept today….like, hardly at all. He was in a pretty good mood most of the day, but he had a couple crashes (by “crash”…I mean very very angry!) that certainly were not ideal. One “crash” was horrible. He started getting a little mad, so we were trying anything we could other than medicine to calm him down. In fact, we got permission (being that he still has a chest tube to drain the effusion) to hold him. So while he was accelerating his melt-down, we got him out of the bed into Leah’s arms….and when that didn’t work, we knew something else was wrong. It actually spiraled even more out-of-control to the point that we got a little worked up ourselves, and strongly/politely asked, “will you please do something for him!” So they decided to give him morphine. However, before they even gave it, he actually already settled down…but not how we’d prefer. He wore himself out. He seriously went limp, and just laid in Leah’s arms (in his bed). Sooo…he “calmed down”, but not really ideally. They are trying to figure it out, but at times we wished they’d try a little more without our prompting….but that’s probably me typing out of emotion. We really are pleased with our care, but obviously there may be times where we need to realign with our physicians and staff. (I hope this doesn’t sound like complaining…it was just another stressful afternoon).
We were visited by some friends today. Our good friend Chrissy visited once again (she’s been a huge blessing), an “old” friend from our St. V’s day who has always been there to understand all that we are going through (as her son just finished his last surgery from the same condition Beckett has), and lastly some great Riley NICU friends visited. We are so blessed with some great friends who just so happen to be huge “Beckett fans”!
Whelp, it’s been an entire month (to the day) since his last heart surgery! What an amazing day that was! And we have come so far since then. We are so thankful to even be able to write another post of another day with Beckett. Such a blessing! Perspective is everything, and we’ve got to choose that it could be so much worse than this. In fact, just the other day Leah and I walked past a women who said, “Geesh, 2 days is too long to be in the hospital.” And even though Leah and I politely giggled afterwards, we must assume the same perspective that “it could be worse”. May we somehow grasp a healthy perspective outside of our understanding (if that makes any sense).
The morning began with Beckett in quite the good mood, and actually holding pretty solid saturations. So we ran down and got some breakfast from McDonalds (facilitating my weight gain), and shortly after we returned Beckett began to “drop beats”. It wasn’t necessarily an arrhythmia, but more so like I just said…he just wouldn’t complete an entire heartbeat here-n-there. So they called in a Cardiologist who helped calm our anxiety and sort of just talked us through any questions we had for him. Also, Beckett’s blood pressure began to rise slowly, which was certainly disconcerting. Again, the Cardiologist help put that to ease….but we all did “agree” that it wasn’t “ideal”.
We then inquired about Beckett’s Cath to see if that was still the plan for the day. They said that it was scheduled or around 2:00pm or 3:00pm today. At around 3:00pm we were told that it’ll happen at around 4:00pm. Turns out, we did end up taking Beckett down for the Cath at 4:00pm….however, he was just crying and screaming the whole way down.
To be honest, both Leah and I have been uneasy on-n-off throughout the day today. We couldn’t really ever put our finger on it, but something just didn’t feel right. So at one point, I just stopped what Leah and I were doing today and just prayed against these unsettling feelings and asked God for peace and comfort to rest in his will as he continues to fight for us (including Beckett).
Back to the Cath. We actually stepped outside for a moment this afternoon (during the Cath) and just tried to enjoy the weather some. Leah and her mom did a crossword puzzle, and I just tried to relax. We eventually came back inside to be pleasantly surprised with a visit from my aunt, uncle and cousin. I wished we could have brought them in to see Beckett, but he was still out at his Cath. So my uncle prayed with us and we went back to Beckett’s room.
Shortly after, Beckett returned. They said that he handled the Cath really well, but that we need to wait until the doctor speaks with us about what he found.
What does that mean?!
…I guess we’ll find out.
So we waited and waited (what seemed like forever, but it truly wasn’t that long). Eventually saw him walk around the corner and with a pretty straight face. He greeted us and proceeded to talk with us about Beckett’s collaterals (keep in mind, collaterals and his pulmonary pressure were what we wanted to hear about). He said that he didn’t end up plugging any collaterals…he said that they were too hard to get to and not worth plugging because of Beckett’s pressures. You may remember from a while ago that Beckett’s pressures to handle the Glenn procedure he had on July 2nd needed to be around “15” or less (preferably less), and when the pressures were checked, one side was about 15 and the other side was about 25. Twenty-five is NOT good and the Glenn procedure would fail. So when the surgeon opened Beckett up on July 2nd, he remeasured Beckett’s pressures and saw that they were in the upper teens…so he decided to proceed with the operation. And to everyone’s surprise, he had been handling it quite well. So with that being said, this cardiologist that just did his Cath was surprised by Beckett once again that his pressures are measuring at around 10-12 on both sides! That’s amazing! Amazingly good!
So here we are, sitting in Beckett’s hospital room once again and praising God for another big win today. We are worn out (and at times, very frustrated), but we are thankful Beckett’s effusion has gotten drained and his Cath went well (and yielded great results). Now we just wait to eventually pull the chest tube out, wean him back off the VapoTherm, head back to the heart center floor, recover, then go H.O.M.E. (again). That’s OUR plan….but we’ll see what Beckett’s plan is. 😉
I was reminded today that it has already been a month since we dedicated Beckett to the Lord! It was truly a special moment for us back on July 1st, and if you missed it (or just wanna see it again), here’s the link:
Beckett is a gift, and these past few days are yet another reminder to not take any new day with our son for granted. I charge you to do the same! Take “it” one day at a time, and as cheesy as this phrase may be…..”live like you are dying!”
Hebrews 10:23
Let us hold fast the confession of our hope without wavering, for He who promised is faithful.
You all deserve some sort of update, but this may be short and to the point:
Becket is doing much better today than yesterday. He has still struggled with his sats on-n-off throughout the day, but as the day progressed, he seemed to pull it back together. He did dip numerous times into the high 30s…which was super scary (well, for me). But he always pulled himself back…eventually. It was usually after he would get a lil angry or too worked up. He’s been kinda out of it for the most part today…….a lot of sleeping. But I guess that’s a good thing. Sleeping is Healing, right?
He got taken off the ventilator this morning. They said that he was awake and “telling them” to take the tube out! Though that’s great news, we feel like it’s a cruel joke because they will just reintubate him tomorrow for his cath. His cath IS scheduled for tomorrow, but we are being told that he is 4th in line for the day, and that if there are too many delays, they may actually even bump his cath back to another day/time. That would certainly not be ideal. We’d like to keep this process rolllin’. But all in due time. Please remember, cath’s aren’t easy, and there are always risks involved. Please pray that if (hopefully) he has the cath tomorrow, that it goes well and they are able to fix and mend anything necessary for Beckett’s full recovery.
We’ve been staying in the Ronald McDonald House since we got back down here, but will most likely end up staying with our friends in the house we’ve been staying at these past many months. They are such a wonderful family, and we are so blessed to have no many amazing friends in our lives like them.
Sorry this was so short, but I hope you’ve found it informative. Thank you SOOOO much for the prayers. We have not, and will not ever take that for granted. Thank You. Thank You. Thank You.
“Never be ashamed of a scar. It simply means you were stronger than whatever tried to hurt you.”
-Unknown
Sooo, we’ll keep you posted, but as of 3:00am this morning, we ran Beckett back down to Riley’s Emergency Department. He’s currently “ok”, but we’d really appreciate the prayers. More details will come after the dust settles a little. We were certainly enjoying our time at home, and fully expect to return sometime soon (whenever that may be).
Not a great night last night, but not horrible. I’ve realized that I’ve left out an important detail as to why Beckett might be “struggling” so much with what seems to be a change of scenery; we’ve begun weaning Beckett’s methadone once again ever since we came home from the hospital. Yes, the new noise (or lack-there-of), sensing our “fear” when he’s hysterically crying, or any other current new element he is adjusting to…may be a contributing factor to his fussy behavior, but more relevant may be the fact that he is most likely withdrawing from his methadone. As typical consolable tactics wear off, a common culprit to that behavior is almost always withdraw. So, this may be a battle we just have to wrestle with for these next few months until we can get him completely off some of these meds.
We had another visit from an IU nurse today. She only had in her notes that Beckett had respiratory issues. So, after a few probing questions, I realized that she may need to know about Beckett’s heart surgeries and a brief synopsis of our past 7 months. She was blown away. Now that we are completely on the same page, she certainly has an even better grasp of what she’ll be walking into when she visits. I think we’ll have nurse-visits a couple times a week.
We continue to be provided with delicious meals, which is such a blessing. I can’t tell you how liberating it is to have one less thing to worry about. We were also given an old/new fridge-freezer combo a few months ago, so if you are interested in just dropping off something to freeze for a meal in the future, we definitely won’t turn away any home cooked meals.
One day at a time. Like I said yesterday, we are blessed and stressed. But God is good, and we are truly thankful that we even have him HOME to be “stressed about”.
Last night was not quite as good as the night before. In fact, it was really exhausting. BUT, I guess Leah and I would have to agree that it wasn’t nearly as bad as a few nights ago. I can’t stress enough how much we do understand that bringing a baby home is stressful in general, but when you are told that your baby should not cry due to the amount of stress it can put on their freshly operated-on heart (in which only half of it is actually functioning), it can pile on the stress when your baby is screaming bloodcurdling cries and cannot be consoled. Neither Leah nor I mind the “annoyance” of it (yeah, we’d rather be sleeping), it’s just scary to think your son could literally be wearing himself out………….not a pleasant thought.
Beckett has had some good moments today. It’s just that unfortunately those moments almost always end with him working himself up way too much to the point that he refluxes, and then it’s “game over”. He’ll start crying sooooo hard, and you can can’t calm him down. I think that’s one of the things that bothers me the most. He use to respond really well to me trying to console him…but I’ve been pretty much useless lately when it comes to that. Sooo, we hold him, rock him, sway him…really anything we can think of….and the extra sad (and like I’ve said before….scary) thing is, he usually stops crying once he’s sooo tired out; it’s not a good thing.
On another note, my parents just left today…they were a huge help. My Dad pretty much painted our entire bathroom for us. Though that was certainly not necessary, it is surprising how much a little paint can add to a room. It looks great! Thanks Dad! And my mother just helped with anything and everything. Leah and I are truly blessed.
Moreover, as I type, Leah’s sisters and mother are pre-drawing all of Beckett’s meds for us. That is a HUGE help. I wish we could draw them up for an entire month, but due to their shelf-life (and some need to be refrigerated), we can only predraw a few days at a time (but that’s better than drawing them each time he needs meds….that would be all the more stressful and very time consuming).
So, that’s about it. We are blessed. We are stressed. We are sleep deprived. And so very thankful. Please continue to pray for rest, patience, and continual healing.
We had a GREAT night last night. Yes, we had to get up multiple times to either administer meds and/or start/stop his feedings, but we can handle that as long as he doesn’t have his scary and sweaty meltdown moments. We are so thankful for your prayers, God is good!
He is still a lil cranky here-n-there, but he actually had a couple extended moments today where he just laid and played. He’s such a precious little boy, I just can’t wait for him to be able to handle being awake for longer periods of time and lessen how frequently he refluxes.
I must apologize for the lack of photos, because I want to begin posting some again…I guess the day just slips away from me to post any. We will soon. But on that note (kinda), though we still GREATLY appreciate the consistent prayers, support, financial support, and even the provision of meals…but I must share that daily posts may not necessarily be the norm going forward. We will certainly post as often as possible, but I would encourage the posture that “no news is good news”. You all totally deserve “news”, so I will reemphasize that if/when we can post, we will definitely try!
Additionally, I feel like the blue ribbons should be addressed. If you are/have been proudly supporting Beckett’s fight these past 7 months by tying up a blue ribbon in front of your house, feel free to officially take it down. We haven’t taken ours down yet (because it just feels kinda weird to), but I’m sure we will soon. Lets all take ’em down with pride as a representation of all God has done in and through Beckett’s life.
I’m hesitant to post about this because I’m not completely confident how plausible it is to pull this off. BUT, we are looking into a way to possibly offer some Beckett merchandise (like t-shirts and bracelets) on our website. So, stay tuned…we’ll see what we can actually pull off.
Also, Beckett turns 7 months tomorrow!! I can’t believe it. I’ve said it before, but these past few months have been the longest and quickest few months of our lives. We are so blessed, and have come sooo far!
My parents are here helping this weekend. Both my parents and Leah’s parents have been such a HUGE help. We have an amazing family!
And lastly, if you are interested in helping us out with some meals, here is the link: http://www.takethemameal.com/meals.php?t=ENMX4112
Thanks again for those of you who have signed up. We truly…TRULY…appreciate it!
After re-reading this post, I did not mean for it to seem short. You all are amazing though…and Beckett is doing well. We are still just taking it one day at a time (#ODAAT).
Last night was exhausting. We know bringing a baby home is tiring, but bringing a 7 month home with 8 different meds that need to be given at various different times in addition to being fed over an hour long pump, and monitoring his oxygen saturations is a lot to bargain for. However, I cannot emphasize enough just how worth it all of this is….it’s just exhausting.
For example, I tried to take all/most of the duties last night for us so that Leah can get some sleep, but the night got away from us. Beckett woke up numerous times which transpired into many “meltdowns”. These meltdowns are stressful and kinda scary! It usually begins with him beginning to whimper and cry, which turns into an all out scream, in which he begins to desat, but then he kicks around so much that the sensor can’t read his saturations anymore, then he sweats so bad that he sweats the “tape” off his cheeks that hold his vital nasal cannula in his nose (especially vital while he’s screaming and desatting), then while Leah is trying to bounce him to settle him down…I’m trying to retape his cannula back to his sweaty face in which I miss repeatedly and poke him in the face, sooooooo…..he’s screaming, the pulsox reader is screaming at us, we’re trying to hold the oxygen to Beckett’s sweaty face while Leah is bouncing him, he’s pulling it away, Leah and I are trying to speak calming to one another, it’s 3:00am in the morning, and the room is pitch black. From the outside looking in you may think, “what’s the big deal?”….but I’m tellin’ ya…it’s crazy.
So, Leah and I are a little sleep deprived. And to make it a little worse, after all the commotion last night, Beckett started doing some arrhythmias (where his heart beats erratically) again this morning. That was kinda scary and certainly not ideal for a baby with a heart condition. Thankfully a “home nurse” just arrived and assessed him. She really wasn’t sure what to say other than call the Cardiologist (I’m not even sure she even knew he had a heart condition when she first arrived). The Cardiologist later affirmed for us to feel comfortable calling them at any time throughout the night, so that made us feel a little better. But still….yikes!
So, yes…yes we are home! Hallelujah! But please keep the prayers coming. He still has a lot of meds to work through, and a lot of developmental issues to overcome. Please pray for continual perseverance for Leah and I, for patience with Beckett and with one another, and certainly continual healing for Beckett.
I hope this post didn’t/doesn’t sound too much like complaining, but rather informing. Also, thanks to each of you who have signed up to bring us means….what a huge help!! If you are interested in helping us in that way, please feel free to sign up here: http://www.takethemameal.com/meals.php?t=ENMX4112
Heart of Beckett 