#bronchopulmonarydysplasia

MOST RECENT

4 days after being admitted for Respiratory Failure, not Respiratory Distress, not labored breathing, not retractions, but because he was in RESPIRATORY FAILURE...our miracle boy is going HOME!😭😍 We’re so greatful for all the nurses, the doctors, the respiratory therapists, and the flight crew who helped save our baby’s life.
Bronchopulmonary Dysplasia (CLD) is an awful awful disease. It’s almost cost us our sweet boy multiple times, and this probably won’t be the last.
Theo lives everyday with this disease, he takes daily maintenance medications to help him manage it. It’s a Chronic Illness, and he will deal with it for (possibly) the rest of his life. Theodore’s Respiratory failure was triggered by common viruses that appear to be nothing more than a cold or minor upper respiratory infection in healthy people such as you and I, and the spread of these viruses could have been easily prevented by simple hand washing/sanitizing , covering of coughs and sneezes, and STAYING HOME OR KEEPING YOUR SICK CHILDREN HOME IF YOU OR THEY are sick!
I know some circumstances, staying home isn’t possible, and spreading germs is accidental, but please please PLEASE help us keep Theo (and all the other medically fragile children) safe and help prevent the spread of illnesses. You literally could be helping save my sons life...or you could be helping take it.... Please share, spread knowledge and awareness, You never know who has their own little Theo at home...
#motherhoodunplugged #congenitalheartdisease #bronchopulmonarydysplasia #viralseason #miracleboy #preemiestrong @fromminitomoose @marchofdimes @ourlittlepreemie #gtube #tubie #sahm #PICU #sacredheartmedicalcenter #lifeflight

And just like that the typical high/low NICU day. Ending our day with a schedule surgery for tomorrow only God knows how 🤷🏽‍♀️. Princess here the past two days has required a TON of oxygen support and today she had a visit from ENT team and they discovered this. In Valentina’s airway, she has a decent sized cyst that can be causing her breathing problems. So tomorrow surgery it is! We anticipate an hour tops, no intubation, and her healing process to be 48 hours. All prayers up to the Lord that he lets us kick this pebble out of our path and keep moving forward to getting home!! 💕🏠 #teamvalentina #micropreemie #necsurvivor #tetralogyoffallot #cleftlipcutie #bronchopulmonarydysplasia #shortgutsyndrome #gtubebaby #broviac #tpndependent #babywarrior

Theodore deteriorated extremely fast over night, and at approximately 5 am he began setting off desat alarms in the low 80’s while maxed out on the highest oxygen setting we had available on our tanks at home. So we packed him up and rushed him to the closest Emergency Room. (We contemplated 911, but we knew we’d be able to get him to the ER faster). Once we arrived, he was clearly in respiratory distress, and was immediately taken back. Within 5 minuets they were requesting our approval to call Life Flight and to transfer him to Sacred Heart in Spokane.
Life flight picked He arrived in Spokane at about 7:45am and was taken back to the Pediatric Intensive Care Unit (PICU). Upon arrival they ran a viral panel, and based on his increasing oxygen needs, turned his oxygen up to 8 liters (previously 7). They discussed with Levi (I was driving) that if he doesn’t improve and gets worse, sedating and intubating him in order to place him on the ventilator, is quite possibly something we are looking at.
At about 11am his viral panel came back positive for Rhinovirus, Enterovirus, and Parainfluenza 4.
They said to expect him here at the very least, 3 days until he is stable and can be moved to the Pediatric Unit, and then we can go from there.
We appreciate everyone’s love for Theodore, and we will keep everyone updated as we can.
We want to say thank you to both our families (Levi’s and mine) for stepping in to help us with this emergency and our older babies while we are in crisis. These situations are so incredibly scary and stressful for our entire family, so if you message us (or another family member, and we (or they) don’t reply, we apologize). We’re all just trying to keep it together.
#chroniclungdisease #bronchopulmonarydysplasia #bpd #heartdisease #tubie #gtube #momhub #preemie #28weeker #intensivecare #picu #lifeflight #respiratorydistress #lungbaby #tiredmomma #tired #motherhoodunplugged #medicallycomplex #medicallyfragile

Hey. Village. Listen. This is kind of a big deal. Because....this girl right here? The one you’ve prayed over/for, cried for, cheered for, loved, and helped raise for the last 3.5 years... She’s. Getting. Decanned. aka...she’s getting her trach out.
We just saw the ENT and he said as long as the pulmonologist says it’s okay when we see him in 2 weeks, he’s fine with it too. And pulm was okay with it last year. So. Holy shit. We’ll schedule it for a Monday or Friday, admit her to peds floor, pull it, and observe for 24-48 hours.
I can’t even say anything else. I can’t imagine our lives as anything other than trach parents. I can’t express how thankful we are to all of you for your love and support from the very start of our trying to conceive and every day since. I’m extremely overwhelmed right now but I’ll keep you all updated. Thank you!!! 😍❤️😁 #trachlife #ontheroadtodecann #trachbaby #tracheostomy #bronchopulmonarydysplasia #chroniclungdisease #prematurity #bornat30weeks #nicuawarenessmonth #sisu

Love these little ladies!!! Cannot believe they will be ONE in nine days!!! 💖💖💖
#preemietwins #twingirls #born29weeks #docband #gtube #bronchopulmonarydysplasia

How are all my fellow medical parents and preemie Parents preparing for viral season? Those who isolated last year, are you doing it again this year? And if you have a lung/heart baby, or a newborn; are you pursuing #Synagis? :
We’re planning on isolating again this year, as best as we can given both Bigs will be in school 😬. As for Synagis, we’re DEFINITELY pursuing it and the application is already in the process. Theo’s nurse and I talked, and we’re anticipating a fight; but according to the #astrazeneca website, Theodore meets all requirements for approval, but we know how insurance is 🙄. :
But I’m curious as to everyone else’s plans!
:
#tubie #gtube #bpd #bronchopulmonarydysplasia #chroniclungdisease #preemie #28weeker #theo #motherhoodunplugged #congenitalheartdisease #momhub #motherhood #sahm #viralseason #synagis #medicaljourney #medicallycomplex #medicallyfragile #medicallyfragilechild #nicugrad

Natalie has gained 4lbs since February and now is on the charts for her weight and BMI! 28lbs!

“From the tiniest acorn grows the mighty oak.” 💞👩‍👧❤️ This quote was sent to me while Mae Mae was in the NICU and I’ve never forgotten it. What a mighty oak indeed... from 2 pounds 3 ounces to nearly 40 pounds now! 😍😁 Grow baby, grow! #nicuawarenessmonth #nicuawareness #pulmonaryhypertension #gtubebaby #preemiestrong #bronchopulmonarydysplasia #trachbaby #trachlife #prematurity #bornat30weeksand1day #oneyearontheinside #niculife #sisu #mightyoak

September is O2 awareness month. I use a oxygen machine every night when I sleep and sometimes during the day for my chronic lung disease. When I was a baby/toddler I was on oxygen 24/7.
#breathingino2 @adventures_zanna #oxygenmachine #oxygen #oxygenawareness #bronchopulmonarydysplasia #chronicillness #chronicillnesswarrior

The boys are feeling better, but now sissy has presented with a terrible, barking cough. Nebs & mommy’s bed for the night. Praying we get some sleep. So far, Miles is the only one who has ran a fever and had other symptoms leading me to believe he had some sort of respiratory infection, but Carter’s seemed to just be an asthma flare as he improved greatly after a few breathing treatments. Hopefully, that will also be the case with Aly as she has no other symptoms aside from a pretty nasty cough. #sallaskaquads #alymae #preemielungs #chroniclungdisease #bronchopulmonarydysplasia #asthma #breathingtreatments #feelbetter

Another quad down. 🤧🤒😷 I do not like this time of the year and all the germs that come with back to school. #sallaskaquads #mileslevi #carternolan #anotheronedown #backtoschoolgerms #sickness #preemielungs #asthma #chroniclungdisease #bronchopulmonarydysplasia #breathingtreatments

We never imagined we’d be in the NICU for 6 months...8 months...1 year. But there were times we never imagined we’d be able to take our daughter home, too. I look at pictures and remember the roller coaster of intubations before she finally got her trach, the roller coaster of emotions that came each time the intubation failed. I remember celebrating each month and the joy on the faces of every visitor who came to meet her. Then the nurses threw her an amazing first birthday party and we made it! She made it. She lived and taught us so much about strength and life and living. #nicuawarenessmonth #nicuawareness #pulmonaryhypertension #preemiestrong #bronchopulmonarydysplasia #trachlife #gtubebaby #30weeks #oneyearontheinside #chroniclungdisease

#nicuawarenessmonth day 3! First Kangaroo.
This is the first time we got to hold our sweet boy outside of his isolette, and up against us. He was nearly two weeks old, and I remember how desperately he and I needed this. He was very, very sick. The outlook was grim, and we weren’t sure how much time we had with him. We had one provider tell us “do you pray?” I said yes, and she told me “Momma, you need to pray for your son. Pray as hard as you can, he needs it”. That’s when the reality of his state set in. We were loosing our son, and my body was aching and crying to just have him with me again. He was doing so poorly and he needed to be with his momma, against my heart. I walked away from this day absolutely heartbroken and terrified because he was so sick (this is when he was going septic), but a little more at piece, because our bodies were able to be one once again and he got to lay on my chest, I kissed his sweet head, smelled his perfect hair, and I know that we were both going to fight with everything we had.
#preemie #28weeker #kangaroohold #mom #prematurityawareness #specialneedsparenting #momhub #congenitalheartdisease #bronchopulmonarydysplasia #intubation #firsthold #love #fighter @fromminitomoose @marchofdimes @ourlittlepreemie

Baby T is doing better today! We’ve moved him to a slow rate, 37ml/hr continuous feed and it seems to be helping! We will stay on continuous at this rate until his Fundo can be assessed either by a PH Probe Assessment, or an Endoscopy and he will begin some anti-reflux medication to help.
We’re hoping they can just do the Endoscopy and kill two birds with one stone, and check his gut because they need to anyways. But we decided we will take what ever is available first because we NEED to know about the status of his fundo because of his lungs and his persistent wet cough.
He seems to have weathered the pneumonia well! He’s back off his oxygen and breathing well! Thank goodness for antibiotics and great physicians!
#gtube #tubie #preemie #bronchopulmonarydysplasia #nicuawarenessmonth #nissenfundoplication #specialneedsparenting #mom #momlife

#nicuawarenessmonth photo challenge day 2! “First photo”. It’s pretty cool that this is our first photo we have of our sweet boy. It’s the exact moment he joined us earth side. My husband shot this photo with his eyes closed, using my poor quality cell phone camera 😂 and it came out AMAZING! Fun fact- Dr.Logston, the AMAZING OB who took care of us my whole pregnancy and delivered Theo, has this photo (blown up to a poster size) is actually hanging in his waiting room! How cool!? @fromminitomoose @ourlittlepreemie @marchofdimes #28weeker #birthday #birthphotography #preemie #nicubaby #nicugrad #bronchopulmonarydysplasia #specialneedsparenting #momhub #preeclampsia #motherhoodunplugged #cesereanbirth #csection #stayathomemom #sahm #infertilitybaby

From one day old to 5 months old, we weren’t even halfway through our journey yet. But as we are entering NICU Awareness month, I started thinking about all of the love and incredible strength we saw every single day. I haven’t thought about her NICU baptism in months... She was so unstable that we had her baptized “just in case” and that blows my mind to sit and contemplate today. So blessed... #nicuawareness #nicuawarenessmonth #preemiestrong #oneyearontheinside #2yearslater #bornat30weeks #bronchopulmonarydysplasia #chroniclungdisease #pulmonaryhypertension #nicumoments #nicumom

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