Late this afternoon I was contemplating what our next plan of action would be regarding Nora’s little lungs. We have the sleep study scheduled, but that (to
my knowledge) will not offer any insight to the CAUSE of the “chronic lung disease” (?)
Out of curiosity, I hooked Nora’s little foot up to the pulsox machine and turned the oxygen down to ½ liter from the ¾ liter she’s been on. After about 45 minutes it was plainly obvious that she was able to withstand being at a lesser amount. I suppose I had accidentally determined that on our walk the other day that Nora CAN be without, but I never knew where her sat levels were. In the past while being monitored, she could get down into the low 70s before it would be obvious in her coloring. For most of the evening Nora’s sat levels never went below 96 while on ½ liter!! We then lowered it to ¼ liter, which is where she is now, and she continues to stay up in the high 90s!!
Red = oxygen saturation level, Green = heart rate
I’ve been walking on clouds all evening and will assuredly fall asleep with a big fat friendly smile on my face tonight! (Nurses and friends continue to stay the nights with Nora to allow William and I the LUXURY of sleep!)
This is just my theory – and I would love some more input from all of you nurses, doctors, and medical professionals, etc. out there: Could Nora’s lungs have just been simply underdeveloped which then caused that scary blue spell at about 12 days old (which is when she went on oxygen)? Now, with having been on the oxygen for as long as she has, could that be the cause of whatever is showing up in the recent xray as “consistent with chronic lung disease”?
We appreciate any and all advice!
For I know the plans I have for you,” says the LORD. “They are plans for good and not for disaster, to give you a future and a hope.” (Jeremiah 29:11 NLT)
iwillcarryyou 
Alesia i am by no means a medical professional but I have been researching a little and it says that a lot of babys with cld will grow out of it as their lungs develope!! I bet thats the case with nora! Yay for her great o2 sats!!
Hi, I’ve never posted before, but I am praising God with you. I studied acute lung injury in graduate school (PhD) and there are lots of possibilities right now. Her lungs are still continuing to develop, as you mentioned. Also, her nervous system is also continuing to develop, so perhaps this is further supporting her breathing rates, etc. Also, feeding her upright and decreasing aspiration certainly is going to help because it is less stress on her lungs. Also, lungs have the wonderful ability to clear foreign objects like formula. So perhaps when they take the next scan/x-ray of her lungs, they will be clear. But most importantly, our God is at work here, as you are keenly aware, and maybe He just chose to reach down with His compassionate hands and heal her lungs!! How wonderful is our God!!!
My guy follows his own path in every way, including medical. He has taught me to keep a daily log, nice and simple, of what I observe symptom-wise. It really is a powerful tool and also helps prevent the dreaded ‘recall bias’. It is a great tool to reassure me at times, and at times to whip medical folks into action! Some of the most frightening things we have observed have ultimately turned out to be benign, despite dire prognosis. At the same time some things that have seemed innocuous have been very nearly deadly…as parents we have learned to trust our guts–and the diary!
This nurse only observed Nora’s sats above 95% all night long on her measly 1/4 liter. Love that baby!
I think under-developed lungs is very plausible. I am not sure if that the O2 would cause haziness on her x-ray, but it could also be a poor x-ray. Knowing God and Nora, I wouldn’t be surprised I
f the next x-ray showed clear black lungs(black lungs are good on x-ray
I’m only a mum, but I had a premmie at 27 week gestation. he was on oxygen only for 8 weeks or so. His CLD improved very quickly. I completely think it may be possible. It’s clear your little girl is, with God, writing her own medical manual.
I do hope she can come off it soon, or at least have breaks, makes life so much easier.
I don’t know anything about cld, but I am an expert in scb (super cute baby), and Nora most definitely has chronic scb. 🙂 I hope/pray that her next scan will be clear!
My mom met you on your walk yesterday and said that Nora is absolutely adorable. I hope to run in to you guys one of these days! We continue to pray for a healed heart and healed lungs for sweet Nora! I am so happy that you are surrounded by such caring people.
My son was 3 1/2 months early and on a ventilator for two months. Whenever they tried to wean him, his sats would drop (I do not miss those alarms!). After three months, he was completely weaned from any oxygen (okay, obviously he still breathes oxygen. . .). He’s had absolutely no issues with his lungs since.
I would wonder if the positive air pressure from the nasal canula has given her lungs enough expansion to heal and mature. She is precious, and God answers prayer.
Lilliana is only on a 1/4litre of O2 while sleeping. Without O2 while sleeping, she does desat at some point. I discovered on my own that its obstructive apnea while she sleeps. Because her mouth is smaller there is not enough room for her tongue and she tends to let it roll back while sleeping thus obstructing her airway. If she sleeps on her side and has her 1/4litre she is good almost 100% of the time. Many T18 kiddos have obstructive apnea.
You can monitor Nora during the day while she’s awake with the pulse ox to see what her normal is & if she needs the O2. Before heart surgery Lilliana did need O2 while awake, but not after.
Be keeping you in prayer that some answers will come forth with this new enlightening on Nora’s breathing. Jackie
Hi Alesia! I hope you remember me…My name is Danielle Niemeier (Mullins) I went to St. A and lived on Lariat…right across the street from Jennifer Metz… I am a Respiratory Therapist and I have worked with neonates/newborns for a long time… Although I am in child raising mode and now stay home with my kids…
I have been following your blog. What an inspiration you guys are!! Many prayers and positive vibes to you and your family…
Anyway, it is common for babies to desat a bit when upset/crying. I can’t remember what specifically happend when Nora did desat. I do remember you posted about a cardiac condition…
Her desating could absolutely been caused by under-developed lungs. 2 of my 3 kids turn ‘blue’ when they spike fevers. Mainly their extremities but scarey none the less. Wonderful sign she can tolerate her O2 being weaned! I would be curious if she could maintain her high sats when napping with close supervision of course. If she desats when sleeping that would indicate apnea (probably obstructive) and that would definitly explain the xray findings… People with sleep apnea often have xrays that indicate chronic lung disease…
But, I would never wean a baby at night until she has had her sleep study done and of course under close supervision of a medical staffer… If she does have apnea, that test will tell you for sure.
But the fact that you have weaned her down a bit and she is good with that is a great sign!
Many prayers!!
Danielle
Also,,,is Nora seeing a Pediatric Pulmonologist?
This might be a part of it…
http://en.wikipedia.org/wiki/Kangaroo_care
I am glad you tried turning the oxygen down. I was told many times that it is important to remember that oxygen is a drug and kids shouldn’t have any more than is needed. My child with trisomy had similar issues as Nora with the dsats. She was great on 50-100cc’s of oxygen and didn’t need it at all if she was lying in a prone position or if i slouched on a chair and had her on my chest. Once a nurse tried to turn the oxygen off but keep the air on- so the effect was to just add a bit of pressure to help the airway. It didn’t work, but that is something you might try.
In time, we discovered that her carbon dioxide levels were very high but unfortunately, never learned the cause before her death several months later. We later discovered that the doctors had developed their own plan of treatment. They have since apologized for their actions. We will never know for sure but I think the critical levels of carbon dioxide might have been due to obstructive apnea. I don’t know if this was related to the very minimal oxygen requirement.
Hi! I have SEVERE asthma. (I take a $5000 shot monthly that is classified as chemotherapy, and does magic in my body; I’ve gone from 3-4, week long stays per year to NONE in the past few…. ) Back to it: I was constantly sick until I started traveling to Vanderbilt for my asthma care. They are just incredibly smart people who will call you at 7pm (like my doctor did this week) just to tell me something they thought of. If ever you wanted/needed a second opinion, they would be worth researching and I would happily share what small piece of knowledge I have from my experience with them. They’re simply lovely, as is Nora. Godspeed.
I have followed Nora since you started blogging . I love to see her sweet pics and hear your story! Your faith is great:) and quite honestly is all that will get you through some days!! I have 2 children with a rare firm of dwarfism(1 lives with Jesus). I also have 3 healthy children, and work full time for USPS! We have to keep insurance… I love that you are so honest and get it all out! I especially love that your faith and following what you feel is best for Nora got you this result from the 02 machine!! I believe drs always tell you worst case, only you know what is best for your individual child !! Keep writing, I love it!!
Praise God for Nora’s stats!!!! I will continue to pray for her to be perfect without oxygen!! I know that NOTHING is impossible with God!! She is just SO precious and cute and adorable and perfect and beautiful. Thank you for continuing to share.
LOVE THE PICTURES, AND ESPECIALLY THE ONE OF DADDY’S HAND AND NORA’S HAND. SHE IS REALLY REALLY BEAUTIFUL. SHE LOOKS LIKE HER COLOR IS MUCH MUCH BETTER. SO GLAD HER STATS ARE GOOD. I BELIEVE THAT GOD GIVES MOTHERS A SPECIAL SENSE. BEING THAT WE, AS MOTHERS, SOMETIMES KNOWS WHAT IS BEST FOR OUR CHILDREN. I THINK GOD SPOKE TO YOU AND GAVE YOU THE MESSAGE THAT LITTLE NORA DID NOT NEED ALL THAT OXYGEN.BY ALL THE REPLIES BACK, TOO MUCH OXYGEN IS AS BAD AS TOO LITTLE. I HAVE NEVER HAD ANY TRAINING IN THE MEDICAL FIELD, BUT I BELIEVE GOD IS WITH YOU EVERY STEP OF THE WAY. I AM SO HAPPY YOUR FRIENDS AND NURSES ARE STILL COMING AND YOU AND WILLIAM IS GETTING GOOD NIGHTS OF SLEEPING. NORA ROSE IS GETTING STRONGER EVERY DAY. AS I SAID SEVERAL, SEVERAL BLOGS AGO, I THINK GOD HAS PLANS FOR NORA. SHE IS TOO SMALL TO REALIZE, BUT THROUGH YOU SHE HAS DONE AMAZING WORK ALREADY.