...but no one said it was going to be easy.
The past year has been a whirlwind. I can't believe this is the week, ONE YEAR AGO, that we brought our Sweet Beckett home from the NICU. 88 days in that place. 88 hard days in the place. But no one ever promised it would be easy when we got home. Being a preemie mama the second time around, I was at least a little more prepared for the challenges ahead...the feeding issues, the reflux, the concern for dirty diapers, and the anxiety with cold and flu season to name a few.
And we're in it. I LOATHE cold and flu season. I loathe cold and flu seasons because of days like today. So sorry I haven't been the greatest at blogging lately. But obviously it was time for an
therapy session from this mama update for my mom, grandpa and sister of course.
I try so hard. To protect my babies. But it's inevitable. Everyone tells me that it's going to happen. I'm not that oblivious to know they ARE going to get sick. But it's still awful. And it's hard when people tell me that they "need to build their immune system." Yeah, remember that whole third trimester thing with the important immunoglobins...well, they missed out on that. Both my babies. Frustration.
I get it. But seriously...let's get them bigger and stronger before we must deal with that. Man, it's hard not to just want to put this whole preemie thing up on a shelf. It has forever changed my perspective, but seriously, some days, it just makes me so
mad sad for my kiddos. I hate for them to continue to struggle with things. I hate that their lungs will never be the same. I hate that I have to be so cautious about a "common cold." AND yes, perspective...I know too well that some things that happen to our family, aren't "as drastic" as some other people....but it's the end of the world for me. They are my kids after all.
Tangent. Sorry. Back to today. Well, let's back up actually. Sunday we paid a visit to Cook's ER because Beckett boy had some pretty significant swelling under his eyelid from an insect bite reaction. Of course it was a Sunday evening, and after talking with the pedi on call, it was the best option to take him in to be evaluated. I sure didn't want to wake up the next morning with his eye swollen shut. We already have some eye issues with the little dude, so we needed to get on this STAT! (P.S. He has some cross eye business going on, so back to opthalmology for more measurements on January 10, and then we'll schedule a surgery date. Outpatient surgery. "Should" be no big deal. Could be caused by genetics (on both sides of our family actually) and/or his brain bleed. His prescription indicated farsightedness, but pretty even and within normal range for his age...so that wasn't the culprit causing the eyes to cross.) Ok, back to the ER visit...ended up getting put on antibiotics to help prevent any kind of staph infection from harboring, and a med for inflammation/redness/itching. We saw improvement that next day! So thankful!
So...fast forward (ha in my story) to today. Ellie has been sick with a cough/congestion for 4 days, but luckily it hasn't turned into croup (which she usually trends). However, she's been sleeping upright in the recliner and coughing a lot! Beckett's has been more in the past two days. Both kids were up coughing a lot last night, so I decided to call first thing in the morning to schedule an appt for BOTH kids.
Ellie verdict: Actually her lungs sounded fine. Praise! She did however have an ear infection (actual infection!) in her left ear, and sinus infection on her right side. So ammoxicillin it is for her.
Beckett boy verdict: Bronchiolitis and/or Reactive Airway Disease (Can I see an Asthma diagnosis in his future?)
So he is labored breathing/retracting and refusing to eat. NOT GOOD. He's wheezing pretty bad. His poor tummy was retracting so hard to breathe. It was AWFUL to see. Immediately the doctor was concerned. He mentioned this was exactly what we DO NOT want premature infants to get. Albuterol treatment #1: breathing a little better, not much though really. Chest X-ray: indicative of over inflated lungs (So this is meaning that Beckett boy was having a hard time "moving air"/ releasing air out his lungs. He was ok with getting air in, but out was the problem. Hense the wheezing (on exhale). Makes sense, right?
So then they try and epi injection along with decadron. He starts responding to that which is GOOD and BAD. Good in the sense that he's responding. Bad in the sense that it's likely that he has these breathing complications every time he gets sick. The doctor was contemplating sending us onto Cook's Childrens Hospital, but after a second albuterol treatment, his 02 sats were 92, and he was hopeful that Beckett would continue to respond to the steroid/bronchodilator. So every 4 hours we are giving him nebulizer treatments at home. And have already started the oral prenisolone.
If things worsen...obviously we will be paying another visit to the doctor. If they get much worse it'd probably be an ER visit actually. The doctor didn't think it was RSV. He said that usually with RSV, the kiddos don't respond to anything. Not to the neb, not to the steroid. So we would give him oxygen and fluids to keep him hydrated, and have to ride it out.
And after seeing his labored breathing this morning. I can't imagine him continuing to do this for days. I've been there done that. I was so having flashbacks of the NICU. Remember that night when I was there until 4 am, and couldn't get out of my head the charge nurse saying "He just won't breathe."
I may or may not have been having a panic attack in the doctors room. I was shaking as I was texting my sister. Beckett wasn't responding to treatment right away, and I so thought we were going to have to go back to the hospital...on the anniversary week of COMING HOME! This is supposed to be a celebratory thing. So hard. So. So hard. But I am SO SO thankful that he's responding.
He actually smiled at Ellie and Daddy when he got home. (Just got back from a work trip to New York) And we've gotten him to eat about 12 oz. today (after 2:30 when we finally got back home), so our goal is also to keep him hydrated. Keep his wheezing down, and his breathing slowed.
He finally fell asleep in my arms at 7:30 tonight. Hard part about the meds is they kind of "keep you wired," but hey...we are breathing better...so it's ok! He woke up a little bit and ate a couple more ounces, and is back to sleep. I may or may not be checking on him like 3902589023859023 times.
Please pray for:
1. Beckett's continued positive response to treatment
2. Specifically his lungs
3. His appetite
4. Ellie and Beckett to get some amazing rest tonight.
5. Discernment for us. I'm scared. I want to pull Ellie out of everything. I do NOT want to see Beckett like this ever again. I want to pull her out of gymnastics and Awana. But it's so hard with more than one kiddo to keep them in lockdown. Beckett doesn't go anywhere, but Ellie does. And Ellie can bring home stuff to Beckett. And I know we can too...but ugh! This is so hard!
6. Sanity for us for the remainder of Cold and Flu season. This mama is enforcing an even stricter RSV lockdown policy.
7. Petition for Synagis. Beckett did not qualify this season for Synagis (immunobooster to help fight RSV) because he was 30 days "TOO OLD." I have not been happy about this ever since I found out we didn't qualify. But I am going to try and work with our pediatrician to petition to get it the remainder of the season, especially since he's reacted the way he did today. Not sure if we have a case. But this mama is going to try.
So thankful. It's so hard...even at the beginning...I just have a hard time that this is our life...these are our struggles. Everyone has their struggles. Everyone has to choose to see the happy in it. I distinctively remember Ben saying to me when Beckett was in the NICU when I was having a really hard time dealing with is prematurity..."If this is how we get to have Beckett in our family, than it's worth it.
Even amidst the sick. The weary. Our God is STILL GOOD. Been reciting Psalm 13 to myself today.
Psalm 13
For the director of music. A psalm of David.
1 How long, Lord? Will you forget me forever?
How long will you hide your face from me?
2 How long must I wrestle with my thoughts
and day after day have sorrow in my heart?
How long will my enemy triumph over me?
3 Look on me and answer, Lord my God.
Give light to my eyes, or I will sleep in death,
4 and my enemy will say, “I have overcome him,”
and my foes will rejoice when I fall.
5 But I trust in your unfailing love;
my heart rejoices in your salvation.
6 I will sing the Lord’s praise,
for he has been good to me.
And man, oh man, He is STILL taking such good care of my babies. Thank God with me today helping me remember all the GOOD he has done in Beckett's life. Help me praise him by giving God a high five on the assist today with Beckett and his lungs. So thankful. So thankful he's at home with us.
This will be our happily ever after. We will make it be.
