Newborn with GERD/cyanosis/apnea Update Post 7

[Theoretica]

-xposted in LWaB-

Our beautiful baby girl was born last Wednesday (the 28th) at home, 41w2D, 9lbs 6oz, 21 inches long. She nursed easily and well from the start, no worries there (for once!). She's a sweet, calm baby...much more mellow than the other kids, and we're really enjoying her so much!

There's some things we'd noticed and are concerned with, one of my other kiddos had reflux dx'd at 3 months old that went away around 10 months, but this is awful early and the symptoms seem much more serious:

1. She will turn blue/purple while nursing. She does NOT stop breathing during these, swallows fine, eyes open. But turns purple/blue-even her hands/legs. It lasts 3 minutes or so and then slowly she pinks back up.

2. She arches her back randomly

3. She seems to have EXTREMELY shallow breathing while asleep, sometimes bolts awake and gasps for breath (apnea??). She will also have periods of really rapid breathing.

4. She will choke silently. Just laying in our arms or in her carseat she'll start choking, no coughing or anything.

5. She spits up large quantities. At least 2 tablespoons each time. Sometimes it's right after nursing and sometimes much later (and sour).

I'm sure there's more I'm forgetting. We talked to the ped and he said it's pretty serious GERD, she's started on Zantac and I can already tell a huge difference just in her sleeping. She also apparently is still losing weight

Before she would doze off and bolt awake every 20mins or so, now that she's started the zantac she's sleeping 3-4 hours at a stretch overnight. I'm glad, but with her seeming to stop breathing or breathe shallow I'm also really worried I'll sleep too long and not check on her. She sleeps in our arms, with her head propped up on my or DH's shoulder so she's elevated and that definitely helps.

Anyone else deal with this? Tips? Ideas? Reassurance? Suggestions?

Oh the Ped checked her heart for a long time and said no murmur or anything concerning there

[MotherWhimsey]

I would be very uncomfortable with all of that. Did the ped say that they were going to do a swallow study because of the blue spells while feeding? They can also rx an apnea monitor for a while to see if she's having apnea spells. I just think that they need to look a little deeper just to make sure there isn't anything dangerous going on.

[ellemenope]

Everything you have said about your new baby girl (Congatulations!) brings me back 2 years ago to my baby girl.

I have to say you are so lucky she is nursing so well. DD would not nurse from the beginning. I tried for four months to get her to latch and she only did once.

First of all we were concerned about heart issues, seizures, and CP. Once those were ruled out all that was left was the severe reflux. It was amazing how broad the reflux symptoms were. (She did not actually spit up anything until she was a month old.) But, yes, she had all of your little girls issues.

Sleeping was horrible. It sounded like she was gurgling and gasping and she just flailed around. We tried everything. She ended up sleeping in the baby bjorn bouncer for her first 6 months. It was a lifesaver.

DD was put on zantac at about a month, but it did not work and we went to prevacid which worked much better. Nothing actually cured her, though.

Her reflux resolved itself at about 6 months. It is only a distant memory now.

good luck and be proud she is nursing. Congrats again.

[sbgrace]

Andre had severe GERD from the start too. It wasn't well managed and by three months was horrific in temrs of the damage.

Zantac is not enough for a baby with severe GERD. It will initially help but the effect wears off. My suggestion is to read up on issues with medication choice (like zantac) and dosing issues (PPIS should be dosed 3 x's per day for her age) and then speak to the doctor about what you learn. I wish I had known all that for my son as he might have avoided what happened to him. I also wish I had been more aggressive in getting him proper help. I wish I had been pushy and fought but I just didn't know what would happen to him and what could have been done to prevent it.

You can read about tolerance issues with zantac here: http://www.marci-kids.com/medications.html and you can read about why to use PPI's instead on the same page.
http://www.marci-kids.com/dosing.html Dosing information.

I like Zegerid because it doesn't have issues with giving it away from food which is impossible with babies.

I wish I had that information for my son.

Beyond that we did a tucker sling for his sleeping and I did think it helped.

[TzippityDoulah]

it sounds lie zantac is a good place to start while other diagnosis/remedies are being sought. I wouldn't personally be keen on zantac being the end all/be all. firsta nd foremost zantac is notoriously hard on a baby's kidneys. long term use is NOT suggested and if she's starting this in her first week or so of life i would want to make sure it wasn't the end goal. secondly zantac loses it's effectivity eventually. most meds do. so I would want to know what was causing the severe GERD first.

I personally would start with the mom's diet. some severe GERD is actually caused by fod intolerances. It was for mine (gluten, milk and soy). my kids never full healed from the GERD until older, but it for sure helped with the chocked, coughing, spitting and constant waking from losing their breath etc.

Another thoguht would be to see if you have an overactive letdown that is causing this GERD (or aggrivating it).

If this didn't resolve itself through natural means I would want another diagnosis/treatment strategy. The thingsyou discribe - like her waking blue and what not is just too risky to let go IMO. That needs further investigation.

(btw I'm way natural in my approach personally, so I would likley see a chiro about it. it hep my youngest as he had a very tight sphincter and adjusting it loosened it a lot helping with the other issues)

[khaoskat]

You might also want to consider keeping an eye out on her for Pyloric Stenosis. My newborn (DS3) had it, and some of what you are describing can also be signs/symptoms of it early on.

It is generally seen as early as 3 weeks, but you never know. You might ask for an US of her stomach (more reliable for diagnosis Pyloric Stenosis than an upper GI and does not need you to give her contrast/dye agent).

[Theoretica]

UPDATE:

Well we've been inpatient since shortly after my last post. She had an episode of cyanosis with apnea and that was enough for her ped to admit her. Ugh.

-They've done a pneumogram: Her baseline sat is 92 and she 'spends a lot of time' down at 85.

-They're doing a barium GI and an EKG tomorrow

-They've called in a pulmonology consult, and are considering a cardio consult

-She has an odd 'noise' that sounds like a hiccup in her lower right abdomen, it's only audible when she's REALLY upset and crying but it is LOUD, and you can feel something 'bumping' your fingers when she's doing it. Very odd, they're hoping the GI will explain it.

-Her hemoglobin is 20, which explains some of the cyanosis. At her day of life, they want it closer to 14.

I miss my girls at home, DH has to go back to work tomorrow and they've been shuttled around to friends since we got here. This is really crappy.

The hospital is VERY pro breastfeeding, so that's a huge help. Still, I miss everyone at home and my 2yo is falling apart without me. Breaks my SOUL.

Anyone else go through this? I'm probably forgetting something but I've been sleeping in a chair with her every night so I am woorrrrrrn OUT.

[by-the-lake]

Many hugs to you and our sweet one. I am glad they are investigating these things. Will keep you in my thoughts and please update when you can.
I have not gone through your particular issues, but my DS (10 months) just got discharged from the hospital today for intuscception after getting it fixed.

[MotherWhimsey]

being in the hospital is rough but I'm glad they're looking for answers.

[pixiekisses]

Ah, I'm sorry you have to go through that. But I'm glad they're looking into this.
Blue spells and such would worry me.
We're in the hospital a lot, so I know how that is, being away from the others. s

[KatWrangler]

thinking of you and your new baby.

Let us know how the tests turn out.

[khaoskat]

Different issues, but I can fully related. DS3 at 3 1/2 weeks old got sick, and NO ONE would listen to us -- just kept blaming breastfeeding. I would sit in a chair, nurse him, he would pull off in the middle of a feed and projectile all over me. Finally, 6 days later, someone listened.

I spent the next 4 days in a hospital, with day 2 having surgery. The hospitalw as also very pro-bf'ing. Providing a parent tray for nursing mothers, on-site LC, pumps you can barrow (and they bill your insurance for the rental and also pumping kit) while you are there - pump in your room unless another mother needed it as well, then it was sort of shuttled between rooms as needed.

The doc on the other hand, not very bf'ing friendly.

Good luck, my best advice, is to let the nurses help you as much as possible, especially so you can get a bit of rest.

*hugs* (my journey was about 2 months ago)...remember to not only take care of your baby but yourself, you are only about 2 weeks PP.

[by-the-lake]

How are you and LO? Thinking of you