Fat-Bottomed Girl

Camping and curious as ever. Kristin's first good hold for several days. Elise really likes this quality time. Kristin is holding Elise's blow-by oxygen that basically overoxygenates the air around Elise so that she can breath it through her nose or mouth.

View from Elise's window - not too exciting.

Elise is still doing a wonderful job growing, tonight she's on target to hit 10 lbs! She weighed in at a hefty 9 15 today. They are feeding her the same amount (630 mL) of fortified milk daily, and letting her grow out of the high calorie. Where as previously that amount gave her 150 cal/kg/day, she is now at 140. As you can see she is still under the oxygen hood as she is needing about 35% oxygen today. The doctors would like to see her down to about 30% before putting her back on nasal cannula. Understand that the hood is not for infection control, rather it allows us to determine exactly how much oxygen she needs and prevents her from desatting when she cries and breaths through her mouth. Unfortunately this severely limits our holding time, something that is extremely difficult as a parent. I still try to love on her as much as I can, rubbing her back and neck. We're still trying to evaluate exactly what Elise is doing. The neonatologists asked for an ENT consult to take a look at Elise and see why she's coughing so much. Dr. Allphin believed her cough was not due to irritation from her prolonged intubation or from her NG tube. With all her vomiting he added Pepcid to reduce the acidity of her regurgitation and hopefully the irritation as well. Previously her cough was due to her pulmonary edema, but her lungs sound quite clear. They also took an EEG of Elise to look at her brain activity for anything out of the ordinary, including seizure. We have not received results of that study yet, but I don't think it's going to show anything. Kristin noticed some dusky or mottled appearance to her legs when she was fussy the other day, and that could be a sign of arterial thrombosis. They ruled out any problems there with an aortic ultrasound. Overall, we are still not sure if she may have some underlying neuro-developmental problems, and only time will tell us. With her recent pneumonia and decreased reserve for oxygenation she will not be going to Immaculate Conception Church for her baptism. It looks like it will be too much stress for her, so we will be doing that at the hospital's chapel, or in her room.

The good news is that she is tolerating advances on her feedings fairly well. She now receives 105 cc (same as mL) over one hour with a three hour break. She still vomits once or twice daily, but it is less of a concern as she is gaining weight so well. We hope to get her onto a cannula again over the next couple of days, but she desats so quickly when she coughs or cries. The next steps will be getting her back to some breast feedings and possibly shortening her feeding schedule to a 1 hour on and 2 hours off. The breast feedings will only be twice a day to start so that Elise still receives plently of the fortified, 30-calorie milk.

Kristin and I are getting pretty run down over the whole situation. We just really want to have our baby home, and it's hard not to sound depressing when sharing the news. We'll see what she does and we're looking forward to all of the family coming this weekend.

Jason