Oh yeah baby! I'm wearing a pink Giraffe print sleeper!After our weekend with the boys, Jesse and I were really feeling the need to be back home with them - we just can't stand being away from them this much (although my mom is doing an awesome job with them and deserves a medal of honor, or something more appropriate for unexpectedly parenting two four year olds)! So, we talked to the doctor Monday morning about the possibility of being transferred back to the Med if it didn't look like we would be able to be home within the next week and a half. The doctor definitely felt our urgency. Within the last two days, Caroline has seen 8 specialists to "tie up loose ends." Yesterday, she saw the eye doctor, the surgeon, and a plastic surgeon who is a hand specialist. Today, she saw the nephrologist (kidney doctor), the surgeon, a different plastic surgeon, the physical therapist, and the occupational therapist. That was all before noon today.
The eye doctor yesterday said that everything looked good with her eyes - all good optic tissue. The surgeon yesterday took out her central line - last thing poking in her. The hand specialist said that Caroline is a candidate for an operation called index pollicization. This is basically where they take the index finger and make it into a thumb. This wouldn't happen until she is at least one if we decide to do it which we probably will. If we leave her hand the way it is . . . well, just imagine you don't have a thumb and you'll understand the need for it. The nephrologist wanted to do a kidney scan that evaluated whether or not she had urinary reflux. Basically the same as acid reflux but for the kidney (urine going back into the kidney instead of in the bladder). The ultimate goal is to ensure that we keep her one good kidney in good working order. She had that procedure today and we will hopefully know the results tomorrow. The second plastic surgeon looked at the bone structure around her eyes and determined that everything looked normal but it is really to early to tell. We will have an appointment to go back to him in a couple of months. The physical therapist looked at her range of motion throughout her whole body. We haven't gotten to talk to her in depth yet but it seemed from the exam that the only concern is in her left arm which we already knew. The Occupational Therapist helped us with her feedings. It is very common for a baby who has been through so much to have trouble feeding. Especially babies who have been intubated. In extreme cases, they can be terrified of having anything down their throat. We had a very good session with her but Caroline isn't doing great with her feedings. Fortunately, she has all the mechanics down, we just need to work on her stamina.
Caroline also had blood drawn today to use for genetics testing to hopefully figure out why she has the defects she does. We probably won't know anything about that for a couple weeks.
The only thing that we haven't done now is had a MRI. Although Caroline has had many head ultrasounds that came back normal, they would like to do an MRI in a couple months that would check to see if there was any brain damage from being on ECMO.
Now, really the only thing the nurses are doing for her here are giving her meds, monitoring her oxygen, and helping to work on her feedings. These are all things we could easily do back at the hospital at home. SO, the doctor came in today around 4:00 and said that she thought Caroline could be transferred as soon as Thursday morning. The only thing we are waiting on is our case worker to figure out if the transfer is covered by insurance and if it isn't how much it might cost us. The doctor said that in some cases, if they have jumped the gun, not only is the ride back not covered but the hospital stay back home wouldn't be covered. We obviously don't want that and will hopefully know more tomorrow what the insurance situation will be like.
Please pray that everything will get worked out. To be home home, Caroline will need to be completely off oxygen and feeding 2 ounces by mouth every three hours. To just get back to the Med, we need everything with our insurance to work out.
It is amazing to me that we are even talking about these possibilities already . . . Thank you again for your prayers, love and support!