I shared this last year on my facebook, but I felt it fitting to share on the blog as well; especially in the spirit of the month of love. It’s hard to put into words the kindness and compassion NICU nurses have. I have too many thoughts and emotions still to speak accurately about our time in the NICU. I can’t say it any better than this:
Dear Jill & Jason
Another nurse told me about this blog. Thank you for sharing and reminding us all what it is like on the parenting side of things. My heart breaks for you and little David that he has had so many struggles and too much time spent in the hospital away from his family. I want you to know though that his NICU nurses have not forgotten him and have visited him in PICU & now in PEDS. Even when he was so pale & tiny in that ginormous bed, he was awake and smiling at us, turning his head to look at the one of us who was talking to him at the time. He’s a fighter and a heart-stealer, your boy… but those things we already knew. As nurses we are supposed to care for our patients equally, professionally, not get too attached. But every once in awhile, a very special baby will come along and claim a space in my heart. Your David owns a large piece of real estate there! Know that he is loved by so many and we are all rooting for him!
Love to you all!
I didn’t write anything about love this weekend. Not because there wasn’t anything to write, but because our love was busy focusing on our baby boy. All the love we had was going to him & encouraging him so there was none left over to write about.
Saturday night we went out for dinner and left both kids with a sitter for the first time. A few hours into our night, we got a call from our sitter (never what you want) She thought something was wrong with David’s G-tube because he was soaking wet. Jason went home to plug him back in, thinking it’d be a quick fix. Turns out, his button (the piece that is Inside his stomach) had been pulled out hours before. When David got his tube, we were told the hole can close up very quickly if it gets pulled out so take our replacement button & get to the ER quick! We got there a little after 10:00pm & they rushed us in. The inside hole had already started to close so they begin using a series of dilators to get the tube back in. It was a long, intense process & six hours later, the tube was in! Just when we thought we were on our way home, the ER Dr came in to tell us he wanted to admit David. His oxygen levels were at 74% & anything under 90% is concerning. They suspected more was going on and did a chest X-ray immediately. Our history terrifies us & we immediately jump to fearing another month long stay so obviously we were upset. David tested positive for RSV & Corona virus and was taken to the Peds floor around 8am. We were promised that if he had a good night, he could be discharged the next day, most likely on oxygen.
I called first thing this this morning & they said he was doing great! By the time I got to his room, he’d been on room air (without oxygen) for almost three hours! The doctors are thrilled and letting us go home without oxygen. He’s on an antibiotic & a steroid inhaler, but we’re going home!!!
God is good & our sweet boy knows how to fight. He doesn’t give up!
We joke that these last four months have been a crash course in medicine. We feel as though we have our Associate’s degree in medical terminology. We know more about the GI tract than we want to. We have dilated & irrigated ourselves right into expert status. I can rattle off medical terms I can’t spell & can drop them into daily conversation easily. The things parents do out of love for their children is animalistic; there’s nothing we wouldn’t do.
David is doing great! We have a goal & hopefully a discharge plan. Our house looks strangely similar to a medical clinic with equipment in every corner. We’re ready to care for our son & his needs at home.
Ashton Kutcher hasn’t got anything on us. No TV show could punk us like this last year has. I’m almost too weary & discouraged to write, but this is part of our story and it’s my mission to document it all.
David is back in the hospital. He has enterocolitis again. He’s such a happy, calm baby if he’s even a little fussy, something’s wrong. He’s been fussy since Wednesday.
I made the decision to go to the “other” hospital this time. Even if the diagnosis is the same, there’s a certain peace of mind that comes with a second opinion. This may finally be the beginning of the end. This hospital stay may be the one that gets it all figured out. Or, it may be just another stop on this life journey we didn’t ask for. David’s life may be spent mostly in hospitals. Right now, we wait. And wait. And wait.
There are two kinds of Down syndrome diagnoses; the kind that come with health issues & the kind the kind that don’t. David is part of the former. When we first received our prenatal diagnosis, Down syndrome was all I could see, all I could think about. It was overwhelming to comprehend the basic details of an extra chromosome, so I didn’t think about the second side of it; the poor health side. We’ve been blessed with David’s heart (both literally & figuratively); he doesn’t need open heart surgery as so many individuals with Down syndrome do. But he got hit hard with GI issues. I never knew or had any desire to know as much as I now know about nutrition, digestion and output. If you can do all those things without thinking, count yourself lucky.
Today David is being put under for his fourth surgical procedure in as many months. He’s getting a G-tube placed. The benefit is, he’ll be able to eat, receive nutrition & grow. Without this tube, he’s at risk for failure to thrive. I’m anxious about this procedure because this is the first surgery he’s had that is adding something to his body rather than fixing something that isn’t working. He will have a plastic “button” coming out of his stomach that we will use to feed him. He will have this tube until At Least his first birthday. It’s scary & overwhelming and something else we weren’t prepared for.
Our little boy is just that, little. He’s small and doesn’t weigh a lot & looks younger than his 16 weeks. But just like many David’s before him, he is scrappy. He’s tough and sweet & continues to battle against his adversaries (read: poor health) He wants to be home with us as desperately as we want him home. Today we are one step closer.
I don’t like carnival rides. I really never have. As a little girl, the most I could handle was the Dumbo ride at Disneyland. I’ve been known to ride a roller coaster or two, but not by my own choosing. This summer, I took Ella on a Ferris wheel & spent the entire 10 minutes (or was it hours?!) gripping the bar, her and my pregnant belly trying not to look down. And trying not to pass my fear onto her. Through gritted teeth & white knuckles I kept saying, “Isn’t this fun?” (It wasn’t, by the way)
I don’t like rides, I don’t like the up & down, the unknown, my stomach flipping over itself. I just want to get off. But now, my life is that ride. Every day there are unknowns. Each time a Dr walks into David’s hospital room, my stomach flips. Every time we reach a peak and an end to this ride seems right around the corner, we plummet & flip and grip the handles for the next turn.
Today, the doctor told us David’s feeding tube surgery has to be postponed. Any parent can tell you, a feeding tube isn’t anyone’s dream scenario, but we had made our peace with it, especially since it meant he got to come home! Today, they drew blood & determined his white blood cell count is too low for them to feel comfortable doing the procedure tomorrow. This is most likely a result of his illness from a few weeks back, but even scarier, low WBC can indicate a more terrifying issue – cancer. Children with Down syndrome are at a higher risk for leukemia. Remember months ago when I wrote that I was waiting for the other shoe to drop? That’s the shoe. I’m terrified were going to endure this season only to turn around & receive a cancer diagnosis. We’re not there yet, but if he doesn’t soon get to 500 (the magic WBC count number), they will want to check his bone marrow.
So again, we wait. They’ll recheck labs on Sunday & if his WBC are over 500, they will schedule him for surgery ASAP. We had hoped this would be his last weekend in the hospital & we’d be coming home on Monday. But we’re here for At Least another 6 days. The ride isn’t over yet.
Two posts in one day, what?! 🙂
Whether or not you are praying people, we need your prayers. We are sad and weary. This journey feels never ending. The worst part is that we keep getting false hope. We’re truly chasing after the dangling carrot and running a marathon at the pace of a sprint. We’re burning out but we keep going because we (sometimes falsely) believe the end is near. But, is it? Who knows? Our bodies and spirits are worn out.
We need a miracle. The doctor decided today she will wait until after David finishes this round of antibiotics and do another swallow study. If he can swallow properly without aspirating, she’d keep him for a couple of days to make sure he gains weight on strictly oral feeds and handles them well, then send him home. BUT if he aspirates again, she’ll look for alternative ways to feed him which would probably include a feeding tube for us to administer at home. So, the prayer and begging for a miracle is that on the 13th or 14th (when she anticipates doing the repeat swallow study) he swallows perfectly! Truly, this is where we have to beg God for some reprieve and an all out miracle. Because if he can swallow properly, he can come home without additional complications and we can get on with our lives!!! That would be a miracle because he’s already ‘failed’ this test once. There’s no assurances that he will pass this time. Passing would be a miracle. So pray, beg, sob, cry out and plead for a miracle for our sweet boy.
If this feels like déjà vu, you’d be right. David is Still in the hospital and we’re Still waiting. Waiting to see how he handles food again, waiting to see if there’s an issue with his kidneys or liver, waiting to see if he’ll come home with a feeding tube. The waiting & unknowns are endless.
He’s growing & filling out which are wonderful to see. He’s becoming more alert and smiling which is such a treat. But, it makes it difficult to leave the hospital because I get the feeling he understands more. He knows when we’re there, so he must know when we’re gone, right? Part of my coping has been that he’s so young, he won’t remember any of this. But the older he gets and the longer he’s here, I’m afraid he will remember or at the very least, this time will make an imprint on his life & he’ll always have a ‘feeling’ about his time here. It’s just another thing for me to worry about, hopefully unnecessarily so.
We continue to rest in hope & are optimistic about this next week for our fighter. He is battling his giants.
When Ella was a baby, people used to tell us we were the most laid back parents they had ever met. The fact that we were clueless combined with her overall health led to us never really being concerned by much. We’ve always been quicker to wait it out than to panic & act rashly.
David, as with many other things, is already changing the way we parent. I feel we’re a little more on edge, a little more frightened & quicker to panic when it comes to his health (rightly so given his history)
David has been home for 4 days. We’re still adjusting & making new routines. Today my mother in law & I took the kids to the pumpkin patch. It was a perfect Colorado day; a little chilly but by afternoon the sun was high & we were all a little warm. By evening, I though he felt a little warm. His temperature said 100.7, so we removed a layer, gave him a bath & tried again. It had only gone down to 100.4 so we decided to go to the ER. They took his temperature there & it was 103, so they began running labs. They tested his urine & blood and did an X-ray. Fortunately, it was determined he just had a mild virus, most likely contracted at the pediatrician on Thursday. We were sent home with pedialyte & instructions to give him Tylenol in 6 hours if he needed it.
When we were discharged on Wednesday I thought we were done. I knew we’d have follow up appointments, but I didn’t expect to be back so soon & so unexpectedly. I can already tell I’m going to constantly be on alert & vigilant about David’s health. And while I feel the same way about Ella, I don’t feel the same sense of panic when she gets a cold or runs a fever. I’ve said before I’m always waiting for the other show to drop with David & tonight’s visit reminded me that I can’t ever let my guard down. I can already see myself becoming that overprotective mother. I’m going to have to learn to walk the line between paranoid & advocate.
When will I learn? Don’t get your hopes up in the NICU really means, don’t get your hopes up in the NICU. Ever. Even when the doctors tell you it’s ok, don’t do it. This journey has truly become an odyssey – I can only hope it won’t take 10 years to get home. (See what I did there sweetie? Just trying to make my English teacher hubby proud)
After an amazing few days post-surgery, David had another setback last week. His tummy became distended again and the doctors feared he was on the verge of sepsis. Fortunately, blood work came back negative for infection, but as a precaution, the tube was reinserted to remove formula and bile from his stomach and an IV in his head provided his nutrition. The whole scene felt a little too familiar for this scared mama and I couldn’t control my weeping as I barely held myself up over his crib. David was finally diagnosed with ileus which essentially just means there is too much gas in the intestines and it’s blocking nutrition from moving through. If undiagnosed, it can lead to sepsis so thankfully the doctors were on top of it this time. We had just begun to hope that he would be coming home last Friday and even brought in our car seat for the hour long ‘test’ they require of NICU babies. (I’m beginning to feel as though inanimate objects are mocking me. When I asked Jason to get D’s stroller ready, he went septic and the day I brought his car seat into the hospital, he developed ileus.)
After 4 days of no feeds, the doctors have determined David is ready to try feeding again. They have ordered a hypoallergenic formula and are increasing his feeds in very minimal doses. We know he won’t be home this weekend, but we’re hoping to have him home by Halloween (how’s that for a general window of time?) Jason and I decided that we can’t continue to get anyone else’s hopes up only to be dashed like ours have been. We are going to keep all discharge orders to ourselves and when we have actually arrived home safe and sound we will send out a mass text/e-mail announcing David’s arrival! So, stayed tuned to the blog for a surprise post one day!