Newborn with GERD/cyanosis/apnea Update Post 6

[Theoretica]

I'm going to xpost this in special needs as well.

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?

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

[by-the-lake]

Did he recommend a sleep study or four channel pneumogram? It may be able to be done at home. This will look at heart rate and respirations while sleeping. Its usually done for 12 hours, through the night hours.
If your doc agrees this is severe reflux, why not get a referal to a peds GI?
Good luck to you and your sweet baby.

[Theoretica]

We have another appointment this coming week to check her weight gain, that was his first concern, as he said she was still losing at her 1 week appt, and he wanted to see how well the zantac helps things. He's a great Ped, definitely conservative on intervention, but he'll refer her out if we can't get it handled asap w/him, I'm sure.

I'll definitely ask about the sleep study-didn't think of that.

[omelette]

Both my boys had gerd. One thing that helped so much with my first was a wedge for him to sleep on. We borrowed it from the hospital. It was a large wedge that fit in the crib or on the bed and it had a sling type thing attached to hold him in place so he didn't slide down. It kept him at a 45degree angle for sleeping. Once we got this the choking and spitting up when sleeping stopped and he started to sleep more comfortably.
We got access to this by being referred to an occupational therapist at the hospital. Maybe you could check this out? Here's a link to give you an idea of what I'm talking about.
http://www.pollywogbaby.com/refluxan...cidreflux.html

[dakotablue]

My DS was diagnosed with GERD, He was doing the horrible projectile vomiting and screaming. Meds did not help much.

What did help, and is worth a try was cutting dairy, soy, gluten and corn from my diet. 3 weeks later he stopped projectile vomiting. I will say I don't think he ever truly had GERD.

But maybe this could help your babe?

[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.

[PatioGardener]

Oh Mama, I feel for you. My little dude had surgery and we were in the hospital for 5 days. It is so hard.

Things we did to help with reflux (he has severe reflux too):
I went no dairy no soy (not even trace)
nursed with him upright and me leaning back
block nursing for my over supply
upright after a feed for 30 min (so hard at night for me...)
sleeping at 30 degrees incline (could not get 45, which would be better)
sleeping on his tummy on my chest (also hard for me, as I do not feel it is safe for me to sleep at the same time)
Prevacid
Chiro for him

I hope they find out if it is anything else besides GERD soon so you can work on getting it fixed! Hang in there.

[Plummeting]

I'm so sorry you're going through such a rough situation. I hope you get it all sorted out and your baby is well soon.

[Babyruth348]

So sorry for your struggles with your new babe. My DD, now 9 months had reflux at birth as well. She was born making a squeeking sound and after a visit with a ENT was diagnosed with laryngomalacia. Shortly after that she choked randomly, not after eating. Our Dr. diagnosed her with reflux and started her on Zantac and I went dairy free. Neither of these stopped the choking or projectile vomitting. I asked for a consult with a GI specialist and finally after a few months we got into see her and the Dr. said that all babies with laryngomalacia must be on Prevacid. That Zantac is absolutely the wrong medicine for babes with reflux. So long story short, insist on Prevacid if your babe has reflux. Dose should be 15mg once daily. It comes in a solutab and is fairly expensive but my DD has done awesome on it and has had no projectile vomitting, or choking episodes since. I have also been able to resume all dairy products with no ill effects.

Good luck mama!

[boobs4milk]

hugs! i've had 2 nicu babes. not fun

[marinak1977]

sending healing thoughts and good vibes to you and your little one.

[Pookietooth]

mama I hope you get some answers soon. Sending healing vibes your way.

[Surfacing]

[carliec76]