Tuesday, May 12, 2009

More Spells, High Blood Pressure, Food & Follow Up Appointments

Well, I was hoping to post today that Elise hadn't had any spells in over 48 hours. She had her last one during her 5:00am feeding on Monday. However, last night during her 11:00pm feeding, she had another one. Both of these only required "moderate" stimulation (hard patting on the back, etc.) and not oxygen. But both yesterday and today the doctors (main doctor yesterday and a different one today) said they want to see her go 4-5 days without having one that requires even moderate stimulation. They aren't discounting sending her home on Sunday, but that may or may not happen.

The doctor today also said that Elise has high blood pressure. I'm not sure why her main doctor hasn't mentioned it before, but the doctor today said this doesn't usually doesn't end up being a big deal. Sometimes babies who have had the umbilical arterial catheter (tubes in their umbilical cord - Elise had it for a short time after she was born) can cause small clots in the blood vessels that go to the kidneys. The doctor is ordering an ultrasound of her kidneys and having a pediatric kidney doctor see her to make sure there aren't any issues that will require follow up after we go home.

Last week they switched Elise to the formula that we will use to fortify her milk when she goes home. They've been using a volume to make the milk 27 calories per ounce (normal breastmilk is 20 calories per ounce); however, she's been having very loose stool (sorry, but I'm a mom now so you'll have to read about poop from time to time) and has also been seeming very uncomfortable both with digesting and with gas and pooping. The nurses and I have been asking the doctor about it for the past couple of days, but he hadn't seen it as being a cause for change yet. The doctor today was fine with dropping down to 24 calories to see if that helps. Elise is determining her own volume of milk as long as she gets 180 cc in a 12 hour period and has been gaining weight well.

At this point, they had me tentatively schedule an appointment with Elise's pediatrician for Wednesday (the doctor said to schedule it for Tuesday or Wednesday so I went with Wednesday). Elise will also have an outpatient eye exam with the eye doctor who has been seeing her in the NICU since her eyes aren't quite mature yet. A couple of weeks after she comes home, she need to see the nutritionist at the hospital since she's getting breastmilk to ensure that everything is still going well. The doctor is also checking with the cardiologist regarding possibly doing additional echocardiogram before she's discharged and regarding a follow up appointment with him post-discharge.

Please continue to pray that she learns to grow out of these spells and that her high blood pressure isn't indicative of a bigger problem. Please also pray for strength and confidence for Kit and for me when we bring her home so that we are able to respond quickly and appropriately should she have a spell requiring more than moderate stimulation (aka where we need to use our infant CPR skills).


Jennifer said...

I'm always sensitive to kidney issues as my little guy has been followed by a pediatric urologist since my 18wk ultrasound before he was born. I know we have St V's in common so I'm assuming you're having the same doctor as well. Dr Lashley? I cannot speak highly enough of him. I know you've been in good hands this entire time but I can assure you that Dr Lashley is among the very best. (We're seeing him on the 21st and if I see you in that waiting room, you know I'm going to have to say hi! :o))

Anyway, I know it's rough wanting so bad for Elise to come home and her not being ready yet, but hang in there! She will be home soon, even if it's not on Sunday. She *will* be home in her cute little room.

Continuing to pray for your family. -Jennifer

Stephanie said...


Amanda said...

Oh, that's so exciting that you are able to think about post discharge appointments and even schedule one. I'll be praying that Elise makes if a good 5 days without a spell and you can bring her home on Sunday. Hopefully the lower cal cocktail will be easier for her to digest. I blog about puke all the time and poop quite often too. It comes with being a mom :)