Monday, June 20, 2011

Today

Tim made a little journey to Austin today to help a friend, and I spent my first day alone with the children.  Unfortunately, I had it in my head that it was not going to be an easy or a good day.... after all, my last experience being alone with the boys and Ilse had resulted in having Ilse early.  Remember the flooded garage? 
And, apparently, I was right.  It wasn't an incredibly easy day, and it was because I decided Ilse had blood poisoning (she doesn't) and took her to the emergency room because the doctor didn't call me back fast enough.  This ended up being a good thing, because the ER doctor got us into see the surgeon sooner than our appt. on the 28th.  The surgeon said that we definitely need to replace her little button (it's leaking and the site is red) but that we are going to do our best to wait until the week after next so that it will be an office procedure instead of a surgery.   The doctor burned off the granuloma tissue around her button, and she didn't stop screaming for an hour.  It broke my heart that she was so sad about it.  I gave her some tylenol when we got home and she felt better soon.  It must really hurt to have that button twisted and pulled all around.

I talked to Kim on the way home from the doctor.  I really do need to adjust Ilse's eating, because the fear of her choking in the night and me not hearing it is keeping me up.  I'm going to try shortening the amount of time it takes her to eat (I just did an hour and she did fine, so far) and give her more during the day so I can give her less at night.  A six hour drip at night is just too exhausting, and it is too much in a stretch anyway for her tummy.  It just results in barfing episodes during the night that I end up waiting up for.  I am getting much too tired, so we're going to have to figure something out that will help me sleep and have her still get the food she needs.  If I can just shorten the time it takes her to eat, perhaps we could do the typical every four hours or so all day and all night.... but right now she can't eat that fast, I don't believe.  If this hour time goes well this next feeding too, perhaps I'll shorten the time to 45 minutes and see how that goes, or perhaps I'll just feed her at midnight for an hour, and then let her sleep until six.  It is a difficult line to walk, because she needs her food but she also needs a sane mommy to take care of her.  I know I ended up in the ER today because I was too tired to look at her stoma and say, No.... that's NOT a blood poisoning line.  I do not do NOT want to be so tired that I don't hear her choke, and I also don't want to cave in and do a nissan to make MY life easier.  Her tummy is worth way more than that to me.

Another issue is the formula the doctor has me using to add calories to the breastmilk.  I believe it's giving her gas, but to switch it means that I'm not giving her the calories she's supposed to have.  

Another issue is the breastmilk.  Sooner or later that is going to have to go.  I was waiting to get the results of her SLOS test back...... but the people did the wrong test.  Argh!!!  I don't know what I'm going to do now.  I did pay for another two weeks of the pump today, so I have that much longer to decide.

Another issue is the reflux.... Ilse has been prescribed Prevacid, but I had such a hard time figuring out how to give it to her (when do I clamp and what tube to I use?  Wait... it got stuck, drained out, the syringe didn't work because I did it wrong, etc.) and then she barfed it up, that I haven't given it to her since.  The surgeon said to give it to her anyway, since at the very least it'll make the gross weepy stuff coming from her button site less acidic on her skin. 

I almost hesitate to write all of the above, because I know it is a hard situation to understand if all you've ever experienced are non-eating challenged babies, but this is a real issue and I need to figure it out.  It's very complicated, but my precious Ilse needs me to figure it out, and unfortunately the circle is such that right now I'm too tired to figure it out.  Lol. 

After we saw the surgeon we came home and I worked on some laundry.  I really only got one load put in the washer, and the rest of the time I've been playing at folding Ilse's laundry.  I hope to get it done as well as wash some more, because tomorrow is vacuuming time.  I do have my 6 week check up tomorrow (even though it is really seven weeks) and I'm needing also to.... I already forgot what else I have to do in the middle of typing this sentence. 

I'm thankful to the Lord for giving us this summer to get all these issues figured out.  He is taking care of all of us, and we are so grateful to be receiving His numerous blessings.  Ilse is not the least of them. 

Side note...... I REFUSE to use the terminology 'special needs'.  There, I said it.  Both Tim and I loathe that phrase, but we're so tired right now that we forgot the perfect phrase we came up with.  :)  If I ever get around to it, I'll write out our view on the subject and tell you the phrase we liked.  In the mean time, we just call her our precious baby girl.  And the boys (both of whom are 'special needs') we just call our wonderful blessings from a gracious God, because God is gracious, giving us everything we need in His perfect time.

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