Battle with Right-Sided Congenital Diaphragmatic Hernia (CDH)

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Tuesday, August 24, 2010

More Milestones!

Alicia writing! So yesterday, Thomas calls the NICU and they just say stuff about her feedings and we say we're coming in later. Thomas's sister made us some yummy enchiladas and comes with us to see Whitney. So I go back there with her, and a nurse says that 'Whitney's nurse is on break do you have any questions?' I look at Whitney and say 'huh, yeah, Where's her nasal cannula!?'

The other nurse checks some notes and said that they took it out at 8AM, Monday, August 23, 2010, 4weeks and 5days old! Oh my gosh! So freaking excited! They didn't tell us that over the phone! Huge blessing! Thank you Heavenly Father! That's when it all sinks in... my baby can breathe on her own! Whitney's lungs support her life! Nobody ever thought this was possible! Such a miracle! Whitney has progressed so far and so fast! I love her so so much!

The Occupational Therapist came by before her feedings to teach us about how to stretch her arms and hands and a bunch of stuff. Thomas fed Whitney at 4pm. She took about 20mLs from the bottle then 65 from the tube. They said we would bathe her tonight (yesterday, Monday) at her 8pm feeding time! Later the nurse says that they are going to move Whitney down to the 1st floor NICU Annex! Two huge steps in one day!! She doesn't need to be constantly looked at by the Neonatologists. All she has to work on is feeding from a bottle now. I want her home so badly, but Hopefully not with a feeding tube. My poor baby has been though a ton to much.

My dad came by after work and just in time to follow us down to the NICU ANNEX. He saw her new setup and hung out. It is so big down there and quiet! I think Whitney will like it when she gets use to it. Some of her old nurses came down to say hi and congratulate us and were so surprised Whitneys doing so well! Around 8:30 I got to help bathe my daughter. This was her first bath! She's had sponge baths before (that I never got to see) but this was the first tub bath. Poor thing was crying the whole time, I think because she was mostly hungry. Then we dressed her in a yellow dress, swaddled her up and I fed her this time and cuddled her. We spent a good 7 hours with her that day!

Today was a really busy day for us. Thomas and I picked up Whitney's crib from Walmart. Returned a video monitor that didn't work for a better video monitor at Babies R Us. Finished some laundry. Got to the hospital around noon. We changed her diaper and I fed her and cuddled her for like 4 hours. My mom hung out with us today and my sister! It's really nice to have 3 people in at time instead of just two. Now we can both stay with Whitney and have a friend!

Thomas Taking over now in writing. We're still hunting for a Pediatrician, and based on referrals, I called up a place called Pediatrix located on Happy Valley Rd, spoke with a receptionist there and asked if we could tour their office and chat with Dr. N. this lady said she'd have the doctor's scheduler call me back to set up a date and time. That was yesterday early morning and they still haven't called me back... Today 8/24 we went to tour the Northwest Clinic for Children and got to meet with Dr Ka. We were the only couple there at the orientation that weren't pregnant. Overall it felt pretty good there. Dr Ka was very pleasant to talk with. When the clinic tour was over and everyone left, we got to talk one-on-one with Dr Ka about our baby Whitney and her condition with CDH. We were pleased to learn that she and her colleague, Dr Ke, have both dealt with children who had recovered from CDH. She knew exactly what ECMO was and made us feel very reassured that she'd be in good hands if we decided to use this clinic. They have separate sick/well waiting rooms, a separate waiting room specifically for parents with baby infants, and they even give you the option to just sit in your air conditioned car in the parking lot and they will call you on your cell phone when it's your turn to be seen. So they scored better with us compared to both the Cactus Clinic and Pediatrix and Great Destinations in terms of first impressions. I still have to check with my insurance company to see if Northwest Clinic is in network or not.

The medical bills are starting to come in. It hasn't yet reached the overwhelming threshold, but its getting dangerously close. Even with insurance paying a large percentage of everything, our personal liability for just Alicia (all prenatal care all the way up to the labor/delivery) is somewhere in the vicinity of about $3000, give or take a couple hundred as we're still working out some billing errors made by the hospital. We've been trying to pay the bills as they came in, but ever since the hospital messed up in their billing, we haven't given them a dime until they fix everything. There might be more bills to come, too. I'm not sure if all the claims have been processed yet. Just a fun fact: If Alicia and I were uninsured, our medical bills (not including Whitney's NICU time) would be in excess of $36,000. This includes every visit from the day Alicia got her first prenatal checkup after finding out she was pregnant, all the many numerous visits to Perinatologist, an MRI scan, fetal heart doctor visits, surgeon consultation, neonatologist consultation, 3 day 2 night stay at the hospital, and an operating room delivery. This does not include any of the NICU stuff.

So baby Whitney has been in the NICU for 34 full days as of today, underwent ECMO surgery, spent 6 days on full life support under ECMO, then had CDH repair surgery, and has ever since been given 24 hour attention by the doctors, nurses, and a team of therapists. And it seems to have all paid off in the end because Whitney is doing great! But how much does all this treatment cost money-wise? I don't really know... I know my insurance covers a large portion of it, but what about the rest? We were hooked up with a social worker who basically assisted us in signing up for an Arizona state program that helps pay for most and in some circumstances pays for all of the out-of-pocket expenses that are not covered by insurance. We're still working out the details.

Anyways, I'm going to stay up all night assembling Whitney new crib! Wish me luck!


  1. Please do not use Pediatrix our children went there for a few years but the no call backs are just the beginning with them. Our children almost had to have double vaccines 3 times EACH luckily I kept a copy of the papers showing what they had given and corrected what they had written when they gave it to me. WE are not the only ones I know to have experienced this, and there was much more.
    Sorry to have to write negative but Please consider it.
    Allison Chandler

  2. Post pictures of the crib when you get it all done. I'm dieing to see and wish I could be there to see your joy and excitement. It was so fun to be there with you both last week!

  3. YEAH!!! Go baby girl!! So happy for your family!