March for Babies

Tuesday, May 16, 2006

Between a Rock and a Hard Place

Poor Azure seems to be in a catch-22 situation.
 
The Rock:
The reflux has raised its ugly head and is causing us some concern after feedings.  She spits up a bit, but not all the way, only into the back of her throat.  You know, cutting off the airway and all.  Thus, she stops breathing and her heart rate drops and she has a brady alarm. We are not talking about a little dip here.  We are talking about a heart rate below 100bpm and oxygen saturation levels in the 40% range.  These require more than a little pat on the back and encouraging words like, "take a deep breath honey".  We are talking vigorous stimulation and grabbing the oxygen mask off the wall and taking, in my opinion, way-too-fucking-long to come back around. This occurs  during.and.after.every.meal.  Not fun.  I am thinking about renaming her Brady R. Trunks (the R. being for Reflux).  All of this requires that she remain upright after her feedings.  I have held her, the nurses hold her, they even tried putting a bouncy seat in her bed and propping her up with rolled blankets!  It sort of works, sometimes. Basically, if I am holding her I can start stimulating her before she crashes all the way.
 
The Hard Place:
She's backed up again.  The girl needs to have a movement.  She is tooting her way through the day but she needs to actually get something out besides air.  This is best done while she is on her belly with her knees tucked up under her and her butt sticking up in the air.  We know this, we can count on this.  However, see "The Rock" above.
 
Upright and lay-on-tummy do not co-exist.  The result, one uncomfortable Azure.  One tired but resigned-to-find-a-solution mother and a Pissed-off-Asshole of a father.  Pissed-off-Asshole is T's way of advocating for her when I am not there.   If I am there he tells me what he wants and I tell the nurse.  If I am not there, he has to do it himself and he is, well, not as politically correct as I am.  The good nurses, like Fabulous Nurse, know this.  They know us, they know Azure and they work with us. 
 
Ok, now for the good news. (Yes, I have that too!) 
She is maintaining her own temperature.  She no longer needs the bed warmer and will soon be moved to a bassinet.  I believe the bassinet signifies official "Grower and Feeder" status.  We are close, we are oh so close.  Want more?  Good, I have more. 
 
We nursed last night for the first time.  We are not very good at it yet, but we will keep trying.  Considering her very small mouth and my very NOT small nipples.  It could be a challenge, but she roots around a lot and is a voracious sucker.  I am not ashamed to admit she is a bit intimidating with the suckage.  *cringe*  More?  You want more? 
 
Ok, she is now 4lb 1oz. (1860grams) and 16-1/2 inches long.  Today marks 37 weeks gestation and tomorrow will be 3 months old.
 
I started watching "Little Man" this morning while I pumped.  (I do that, tape movies and shows and then watch them in short bursts while pumping.) So far I have cried three times.  When Nicole the mother gets to hold Nicholas the micro-preemie for the first time I just lost it. It is something that many people just don't understand.  That and minimal stimulation times when you are not allowed to touch the child or talk to him or play his music or read to him or do those things that you feel make you a mother.  When what you want most of all in the world is to mother and you are not allowed to do those things.  That is so hard.  I am sure I will have more to say once I have seen the rest.  So far though, I am loving it.  It is touching and so deeply deeply personal and close to home. 

11 comments:

lagiulia said...

I'm glad to hear your good news and am sorry about the frustration and scariness of the reflux/brady's. My son had a lot of brady's and desats when feeding with a bottle and rarely ever had them when breastfeeding. I think the bottle flow was too fast and some milk would get into his windpipe, making it hard to breathe, and then the lights and sirens would go off. Ugh! I could only take him home with the promise that I would be exclusively breastfeeding for a while. He is fine now (has OTHER problems, but that's another story...). Anyway, I look forward to hearing more good news in time. I wish you -all 3 of you- well. You have been down such a long road already, and it is just amazing how far you've come.

Rachel R said...

Great news about the nursing!!! It's a start, and it will get easier. It really is amazing how far you all have come. Keep it up, Azure.
Rachel (in NYC, no blog)
(I don't have an account with blogger, since I have no blog, but you can email me at chinookmailatgmail.com. I'm not really anonymous!).

Milenka said...

Awww...4 pounds and 3 month old? Time flies! She'll be home before we know it! :-)

Erica said...

That's so great about the nursing...a good rooter and a good sucker equal great nursing and LOTS of milk! Nothing stimulates like el bebe!

Glad to hear Azure is doing well...hang in there!

Vacant Uterus said...

So glad to hear how much weight she's put on! That's excellent. I'm sad to hear about the reflux/bowel obstruction. Poor thing. I hope it resolves quickly.

Well-heeled mom said...

I can't even imagine what you are going through, so I won't try. It's just nice that there is so much good news with the bad, and I look forward to the updates. I think of you often and check daily. Keep up the good work, Azure!

ThreeBees said...

Time does fly! -- already 3 months old and still gaining -- that is awesome!

Thinking of you often. You have all come a long way. . .

Sol said...

Hi Blue.

I am sorry to hear about the bradys/reflux thing... it sounds awfully similar to what Luzio had with his bowel obstruction. It's very scary, I can say that I have been in your shoes way too many times and I understand what you are feeling now. But it's great to hear the wonderful news about her weight and all the progress she has made!

I hope and will pray that she feels better soon, and of course that she can be home with you in no time.

amy said...

Oh, reflux and the havoc it wreaks. And the bradys are fear inducing each and every time. My heart goes out to you.

As an aside. We had been in the NICU for awhile and a new family moved in next to us. Our NICU has these signs that post which isolettle is alarming and what is happening at the time. I remember Rich asking us, "Who is this Brady kid because he seems to have a lot of trouble." We still laugh about that now. As Dolly Parton's character in Steel Magnolias said, "Laughter through tears is my favorite emotion."

You are in our hearts and we hope that each day brings you closer to being home.

Pygmalion's Wife said...

Ohhhhh reflux. My youngest has had a terrible time with it (and by terrible time I don't mean "gee, the baby spits up and fusses every time I feed him!" so much as "the baby has been unable to eat by mouth for the past four months due to the damage to his esophagus and has progressed from an NG tube to a G-tube"). It sounds to me like you are doing all of the right things (holding her up after feedings--remember, you are shooting for a thirty-degree angle as I'm sure you know, stimulating her, etc.). With my guy, he eventually had to go to feedings via an external pump delivered at a metered rate over long periods of time, because any time his stomach got the least little bit full...well...
But my guy has other factors contributing to his GI issues that Azure does not. For instance, he is one of those freakishly rare kids who really IS allergic to breastmilk (not the milk so much as the protein molecule itself, and no not anything I was eating that was going into the milk but ANY protein molecule of ANY sort), and that is a shame because they process breast milk a lot faster, which means less time in the stomach, which means less opportunity for refluxing (I never saw "reflux" as a potential verb until I had this kid). So by continuing to maintain your milk supply (and I know how much work that is and admire your persistence) you are doing the best thing you possibly can for Azure (er, I mean Brady).
My son also had issues with pooping while in the reflux-friendly position, and sometimes I've had to resort to glycerin suppositories with him (I don't know if a fragile little preemie like Azure could handle that or not, but you might just ask). Another thing that seems to help him is when I brace his legs up the way they do when you are giving birth; it gives them better "pushing" power.
God, parenthood does sad things to you...I'm going on and on about throwing up and poo...sigh.
You are an amazing mom--I can't imagine having such a difficult time with the FIRST one; my little "problem child" is my third. For you to deal with all of this as well as you are is a huge and brave and wonderful thing, and I hope that you don't lose sight of that during the daily grind of just trying to get through it.

Heels said...

I'm so glad y'all got to nurse. I think it'll help keep your milk production up and it's less agonizing (in my useless opinion) than pumping.

I hope the reflux is controllable.

Not a fan of sweeping generalizations, but I think "asshole man" is a standard behavior for many men in hospital situations involving family members and a complete and total loss of control or real ability to help or change things.

Hope things continue to improve. She's grown so very much.