Getting ready to go home!

First off Penelope is 8lbs 10oz! She's SO chubby! Her PEG tube site is finally healing up and her hernia incisions are already looking better than my csection scar! I am still amazed at how quickly babies heal! Today is day 123, and we got the official word that we are going home TOMORROW!!!!!!!!!!!!!

After yesterday's post it got pretty chaotic in Penelope's room. The ear/nose/throat doctor had to put a scope down Penny's throat to make sure that her vocal cords were okay. It's protocol for babies that had a PDA ligation since they were operating really close to the nerves that control the vocal cords. She got the all clear on that. After that a nurse practitioner from the High Risk Clinic stopped up to talk to me. We had to pick a primary neonatologist to work with in the clinic for follow ups. We have to come back next week for an ROP exam, and then again in 1-2 weeks for our first appointment with high risk. Then my social worker came by to set up teaching times for today and have me sign some paperwork

Today is turning out to be pretty crazy. I am waiting for a call back from Dubuque Pediatrics to set up our first appointment with our home doctor. Penelope is currently doing her carseat challenge, which is going fantastic! She has to sit in her carseat for 2 hours (roughly the length of our drive home) and keep her oxygen saturations about 88%. She been sleeping the whole time with her sats at 100%. She's got about 30 minutes to go, so I am sure we are fine! The nurse practitioner called in Penelope's prescriptions, so I need to pick those up this afternoon. At 1230 we have PEG tube care teaching with a surgeon, at 1 is oxygen and apnea monitor teaching, at 2 is feeding pump teaching. Then I need to drive to Dubuque to pick up Jeremy and come back. Tonight we need to stay at the hospital until midnight so I can show that I know how to set up the pump for overnight feedings.

This is my last post from Iowa City! YAY! I will post again when I get home tomorrow. After that I will probably need to start a new blog about our new life!

ROP Change!

After 8 weeks of no change, we FINALLY got the news that Penny's eyes are starting to get better. They are now Zone 3, Stage 2.  So we got the okay to take her home from the opthamology side. So now we are in the final stretch of getting 'home ready'. The big hurdle right now is trying to figure out a home health supplier that my insurance will approve of. Since I work at Finley Hospital they would prefer I get my supplies there, however, Finley doesn't carry the pediatric supplies I need. We are trying to see if they will allow me to get it from UI Children's Hospital.  Hopefully we will be able to get the insurance stuff worked out today, then we need to schedule my training on all the equipment. The only thing Penelope has left on her list is do her 'carseat challenge' to make sure she can tolerate being in a carseat for the duration of the ride home. They will do that test when we are within 48 hours of going home. We are hoping to do it overnight tonight or tomorrow! AHHH! I think we will be home by this weekend!

Day 120

Penelope's weight is 8lbs 5.5oz and 18.75 inches long. She's filling out nicely! Yesterday we started her on the at home feeding schedule. So she gets 60Q4 (2oz) of 27 calorie fortified breast milk during the day for 4 feedings by mouth OR by PEG. Overnight she gets 27 calorie NeoSure formula fed through a feeding pump into her PEG at a rate of 40cc/hr for 6 hours. So she gets 8oz of fortified breast milk during the day and 8oz of high protein formula at night. We have switched to formula at night because breast milk can't sit out for that long, and she needs more protein in her diet. We have put her on a feeding pump overnight because sleep = growth. We want her to sleep through the night, and I, too, would like to sleep. too!

I will consult with the neonatal nutritionist when we exhaust the supply of frozen breast milk. She will decide what formula we will go to at the point and make changes to volume as needed. At some point Penelope will just be given number of ounces to hit in a day. The goal is to have her take bottles during the day at her own pace. Then we subtract how many ounces she took during the day from the total amount needed. We make up the difference in the feeding pump overnight. It's the best way for us to regulate her nutrition without having to force feed her. Eventually she will be taking it all during the day and not needing any over night. Once we are doing that for awhile, AND she is growing appropriately, then we can have the PEG removed.

Her hernia incisions are healing nicely. Her PEG site is redder than they would like so the surgeon is coming up today to look at it. They did blood work, and there are no signs of infection, so they want to figure out what exactly is causing the redness. All in all she is doing really well.

We moved back to Bay 4 today because tomorrow we are going to be interviewed by a couple local TV stations as part of the marketing blitz before breaking ground for the new children's hospital. Our room in Bay 3 was far too small, and Bay 4 is the prettiest. So we are now back in Bed 52 in Bay 4. That is okay with me! They have added a flat screen LCD to this room since we were last in it. I knew they were upgrading them, but I am wondering it was a push to make sure the room has all the state of the art stuff in it before they show it off tomorrow!

Also I have added the link to "Penelope's Story" on the UI Children's Hospital website in the links section of the blog. I will also link the TV interviews once those are available.