Food!

I haven't been good about posting updates lately...we're pretty much just chillin' now.  Jolene has been doing very well since she got off of her CPAP machine.  She is SO much happier and less fussy now! She has been taken down on the flow rate too - down to .5 LPM and 21% oxygen.  She's almost ready to come off of all airway support!

Late last week little Jellybean did come down with a low grade fever and her abdomen below her surgery incision turned red...they took some blood and urine cultures, started antibiotics and watched everything really closely.  (She also looked pretty pale...we were thinking maybe she needed another blood transfusion, as a similar thing happened a couple of weeks ago, minus the redness on the abdomen).  Her heart rate also went way up and the monitors showed her having weird arrhythmias.  The next day though there was no redness and as soon as her fever went down the heart rate did too and the abnormalities disappeared.  The cultures came back negative, so we don't really know what was going on but we're glad it all subsided quickly!

Feeds have been increasing gradually each day, working Jolene up to a "full feed."  It is still being given continuously directly into the intestine but she has tolerated it really well so far.  She does still have spit-ups occasionally but it is only mucus and stomach "gunk" so nobody is really worried about that.  She was taken off of her TPN and Lipids this week - her "vitamins" that have been sustaining her since birth, since she has been unable to eat.  Removing this also means there are two less tubes connected to her, and her PICC line (a line in her arm that goes directly to the heart) is scheduled to be removed today!  This also means she can quit wearing her clothes like a toga (since you can't pull them over the lines)...important business, don't you know! :)  All tubes have been removed from her mouth and put into her nose, in anticipation of getting ready to learn how to eat.  We met with the occupational therapist last week (yes, our one month old has an OT!) to evaluate how well Jolene was able to suck (on a pacifier, finger, etc).  She said we could start dipping her paci in milk and giving it to her to get used to the taste.  She certainly wasn't sure about it at first but she has been able to maintain a pretty good "suck" despite her mouth being full of tubes.

Today the doctors gave the go-ahead to try out an actual, real-life, genuine feed!  Her occupational therapist showed Jason how to do it and got her to drink like a champ.  The first little bit kind of made her gag and spit up, but she ended up drinking about 40 mL.  She spit about half of it back up but all in all it was pretty successful for a first try.  Jolene will get to try it again tomorrow and in the mean time will still have the tube in for main nutrition.  This is a giant step toward getting to come home! (One of the big issues in babies with a Congenital Diaphragmatic Hernia is reflux and digestion.  This makes sense, since everything has been moved around in there!  Jolene does have some malrotation but no blockages, so we are hoping it is something she can work through).

In the meantime, we hang out at the hospital and the nurses dote over miss Jolene.  They even made her some Cinco de Mayo decorations. :)

Thank you all again for your continued prayers, visits, and support.  We are so thankful that God has shown our family so much grace!