Newborn always sick

[sierradavis]

Our daughter Aubrey is 6 weeks old today! When she was born they warned us about the possibility of no poop so when she pooped right away we were so excited. They also said it would be hard for her to gain weight. She ate like a champ and gained an ounce a day. We were feeling so positive about this CF thing! Then at 3 weeks she got really congested and started coughing more. She has had a cough since birth but this was a deeper one that worried us. She had no fever and pooped and ate great so we waited 3 days till her next appointment. Well she was breathing too hard and I didn't know what to look for and missed that hint. They admitted her right away and of course we felt bad as parents for not bringing her in sooner. Xrays looked good and bloodwork looked good. She had rhino? some type of cold like infection. Sent home 3 days later on 2 antibiotics. Immediately better. Then we started cleaning the house more--dust wise, spraying Lysol and cleaning hands etc.. we even bought a purifier for her room and the living room. Then last night she started getting congested again and breathing really heavy. By early morning her eyes were crusted over and she had a fever of 100.9. She didn't have the labored breathing but of course we brought her in bc of the fever and the last experience. Also like last time her poop started smelling bad...I know they are supposed to smell bad but this was way worse. Almost smelled sick.

I guess my question is if were missing something. Is there something more we can be doing. I do have an 18 month old that seems to always have a runny nose. We do try to limit the contact between the 2 as far as her getting in the babys face. We don't take her outside much right now bc its so cold. We keep her in warm clothes and swaddled in the house. We have no animals. Any tricks anyone can pass on or has anyone else had similar experiences.

Today they did the Xray again which looked good and also bloodwork and urine and the initial results look good. They say it is most likely the start of an infection and sent us home with antibiotics. I just feel bad bc she is sick so much and only 6 weeks. We want to do all we can to keep as healthy as possible~ Thanks everyone!

 

[Ratatosk]

Are you doing chest physiotherapy cpt at least twice a day? We always increased cpt from 3 to 4 or more times a day if ds got a cough or cold.

 

[Ratatosk]

We also washed hands whenever we got home. Made people wash hands before holding the baby.

 

[sierradavis]

Were on Albuteral, pulzymes and CPT twice a day and it does help her breathing for a little bit but then it goes back to normal. Everyone is good at washing hands before holding the baby, although we don't have many people coming over these days bc were so tired!! And I have soooo many bottles of sanitizer around the house. My middle child thinks its funny to rub it in her hands and smell it!
I will definitely do more CPT...what about the pulzymes..can you do more than 2 a day?

 

[Ratatosk]

You can do albuterol every 4 hours. When ds got bronchitis at 2 months we did cpt 4 times a day with albuterol/atrovent nebulized and sometimes did mini cpt sessions without Nebs when holding him. Did she get RSV? That could be the problem, a respiratory virus with lots of snot, which means you should be doing more cpt to beat the cough out of her.

when ds got bronchitis the also did a culture and it turned out he came home from the nicu with a bug that needed extra antibiotics, so hopefully they're using the right antibiotic.

as for pulmozyme, think 2 a day is max. We only do it once. Also if here nose is full of snot, then you should be using saline spray. We use simply saline and the dreaded booger sucker

 

[sroeseler]

Our oldest spent most of his first year in and out of the hospital. We keep him out of daycare, and added an ultraviolet light to our air system where the filter goes. Its a cheap add to kill bugs in your heat and air being blown though house. Don't get discouraged, keep up with breathing treatments and antibiotics. Doctor will probably start to rotate between two different so any bug they pick up doesn't become immune. Otherwise your doing a good job washing hands and stuff, just isolate germs the best you can

 

[Rebjane]

Have you had a culture swab run on your baby? Making sure she is on the correct antibiotic is VERY important. Also, a simple cold/ or respiratory virus can take so much longer for a CF baby to get over than a child without CF. It's hard in the winter when there are so many viruses and colds going around. Plus having other young children no matter how much handwashing you do there will be colds and germs. It's just the way it is.

Hope your little one is feeling better. Chest PT is important. Babies airways are really small and they can not TELL you how they feel so staying in close contact with your baby's CF doctor is important. That's what they are there for. I called ALOT when my daughter was little; sometimes just to speak with CF nurse for ideas , other times for the CF doctor.

My daughter is now 10 and is able to verbalize how she feels really well; but in the winter I am still calling every week sometimes when she is not well.

 

[Aboveallislove]

A few thoughts.

First, I'm sure you are beating yourself up about missng the first issue. I am still doing the same b/c I missed tummy issues which turned into a blockage and a hospitalization. But this is "new" to us and it takes time. So while the mommy insistinct is to feel horrible, know that you are not alone and don't beat yourself up too much!! But also don't feel bad for calling . . . alot.

Second, as said above, what did the culture show? And what did the CF Center say re upping treatments. Before you alter any meds you should discuss with them. Ours as a matter of course says to up to 4x a day with concerns, BUT 6 weeks old is pretty young so make sure they want that much meds. At the same, time if they have not done a culture and did not tell you to up treatments (absent a reason, i.e., youth), I'd be concerned about the Center and doctors because both are standard treatment.

Finally, I think it is just going to be more of a reality of the colds b/c you have 2 others who even with hand washing are likely touching eyes, nose, mouth, etc and then baby (or even while holding baby) and things they have your baby doesn't have an immunity for yet. And the "normal" colds are just harder. But with upped percussions (taps), that helps.

Hugs and prayers,
Love

 

[JENNYC]

Well it just so happens that Abby just had the Rhino virus and is still trying to get over it. Abby mainly had sinus problems, and oh how I wish I could tell you to do some sinus rinse' because that is what has helped her so much, but you absolutely can't do that on an infant. Poor baby!! Unfortunately they will get stuff like this and like love said you can't beat yourself up about it...it's a learn as you go type thing. I would keep the bulb handy and if she seems congested try to suck out as much as you can, because the more you get out the more it is not sitting up in her sinus' festering. However I remember trying to do that with Abby when she was little very unsuccessfully I might add. Kids have an uncanny ability to avoid those things LOL!! And I can totally see hers turning into a sinus infection not being able to get the mucus moving. When she gets older, much older, sinus' rinses are fantastic!! Abby has mastered singing through them LOL, which is quite impressive. Never doubt that you are a fantastic mom!! You can clearly see how much you love her and how hard you are trying to get her well!!!

 

[mumof1]

Hello sierradavis

G'day from Australia
Hope your little one is doing better on the antis now. We had a very sick cf son 15 years ago, we were always at the hospital. A few things that we tried that havent been mentioned yet are:

• Having a humidifier in the bedroom at night time during winter to ease congestion and make breathing easier as heating tends to dry out the air
• We used to count the number of breaths that he took in one minute (respiration rate) whenever he seemed to be struggling and faster breaths usually meant an infection, so check with your cf nurse or doctor about the rate
• Vomiting more often (had reflux) seemed to go with a chest infection also and there was sputum in the vomit
• Taking his temperature with a baby thermometer when concerned
• Washing face (nebuliser) masks in hot soapy water and air drying them after each use

Its hard when they're little cos they cant cough up the frogs, but keep up the good work, it gets easier! Our son is doing really well even though he was desperately ill when a baby. Best wishes,
Mum of 1.

 

[JENNYC]

We were told not to use a humidifier due to it has the right conditions to grow psuedomonus and spread it in the air and whatever the vapors land on. You might double check to make sure I was told correctly.

 

[Aboveallislove]

I had thought the same thing as Jenny, but I believe you would want to check furnace humidifier to make sure properly set. (Our furnace has HEPA and UV lights and I believe a humidifer on the furnace works differently. But if wrong, please let let me know!) We have a thermometer that checks humidity level etc in DS room as well to make sure not too dry in there.

 

[Murphysmama]

Ditto on the no humidifiers. One of the very first items we were warned against.

 

[Aboveallislove]

Okay, my husband read my post re the humidifer and kindly told me I sounded like an idiot! ;-). He did clarify that you don't want a stand-alone humidifer but one on the furnace. But the one on the furnace should not be a drum unit, but a flow-through unit. And it is important to have that humidifer on the furnance and appropriate humidity in the air (depending on the outside temperature about 35-45% humidity), or you'll have problems there because if the air is too dry things live (and your nose will bleed).

 

[sierradavis]

Thanks everyone! As our luck would have it our middle child had to visit the ER with a cold and ear infection! Both the little ones are on antibiotics now!
Aubrey had to go back in today bc she developed a cough and it had gotten really bad. It would wake her up and she would have about a 3 minute cough fit. The Albuteral helped a little but it still came back. She started coughing so much she would throw up her milk. Now she is on another antibiotic and also nebulized albuteral and she seems better already! After the first ER visit she did get better from those symptons. No more eye crud and the booger sucker was pulling stuff out. I did get some saline drops and they helped out alot thanks for the tip.
I have a great CF team and we page them often and I am so glad they are helpful as well as nice and they show how much they care about lil Aubrey! Her culture for the first hospital stay was the Rhino and the culture from the CF clinic was MRSA. Her cultures from 2 weeks ago were good and showed no MRSA thank god! They took cultures today to see what shows up in case the cough doesnt go away they can get her on the right antibiotics. Now she is on Bactrim and Prelone as well as Albuteral MDI and neb and pulmozyme. So glad I am not back to work yet! Only 2 more weeks off and dreading returning to work!
We are pricing home filtering systems now. I think I will feel better having them. I am going to dread the winter months from here on out now!
Thank you for all the kind words and advice!

 

[JENNYC]

So glad to hear that your CF team is taking care of things!! That always feels so good!! And glad to hear that she is turning the corner!! Sorry to hear that your whole household is practically sick Hope things keep getting better and better!!! I think the hepa filter will make you feel better...it did us!!

 

[JennyCoulon]

One thing to always watch for when they are having a harder time breathing is if they are retracting. Retracting is when they are laboring so hard that their belly sucks in just under their ribs or in front of their neck. I am sending good vibes to you and your little one and I am sure it will get much better. Good luck

 

[Angita]

It is emergency to wash hands before holding the baby.