Surgery

Sorry I didn't get a chance to post last night. It was pretty late when I left the hospital and the PC's at RMH were all being used.  Penelope's surgery was running behind so it was almost 430 when we took her down to the OR. The procedure was supposed to take 1.5-2 hours, but ended up being 2.5. She had a bilateral inguinal hernia repair.  Penelope's left side was a sliding hernia, which was unexpected. So it took considerably longer to repair.  They were closing the right inguinal canal as a precaution, however, when the opened the right it had already herniated, so it, too, took longer to repair than expected. So there are two incisions on her lower abdomen, one for each inguinal canal.

On the upside her gtube was able to be placed with an endoscope, which we were told was unlikely because of her size. So she has a PEG tube now and hopefully in the coming months we can get a 'button' placed, which would look similar to the valve on a beach ball. So it would be flush with the skin.  This feeding tube placement is only needed because Penelope doesn't have the strength to take all of her feedings by  mouth. As soon as she is taking 100% of her feedings by mouth AND having appropriate weight gain she can have it removed. The doctors anticipate she will have it out before her first birthday!

Post-op was tough for her. She was in a lot of pain with the hernias being far more invasive than anticipated. Around 915 last night she got startled by the blood pressure cuff and pulled her legs in really fast, which was incredibly painful for her. So we had a rough 15 minutes until she could have more morphine. When I called at 1am they said she had been sleeping soundly and had not needed more morphine. Same report when I called at 4am. So she is just taking Tylenol for the pain at this point.

She just got her first feeding since 6am yesterday. She was a very hungry girl. She was too tired to try bottle feeding so I got my first attempt using the PEG. So far so good. She fell asleep as soon as the milk started going in her belly.  This weekend I will get trained on using a feeding pump for overnights. I figure if we are going to get stuck having a PEG then we will put her on a continuous feeding pump for overnight so she sleeps all night.

Big Day

Today we moved to Bay 3 for pre-op testing and we will stay there until discharge. I have only met one other mom who managed to hit all 5 bays. I should get some sort of award or at least extra massage coupons! Tomorrow is a big day for us. Penelopes surgery is scheduled for 325 pm give or take 2 hours according to the surgeons. The three procedures will take about 90 minutes (left inguinal, right inguinal, gtube) I also have my meeting with WIC since Penelope gets Medicaid because micropreemies are considered disabled for the first year of life. So I am hoping to get some sleep tonight because tomorrow is going to be a long day.

Gastrostomy Tube

Penelope is now 113 days old and 8lbs! Feedings are still the same, and her respiratory support remains at 1 liter high flow with a floor of 100% (similar to what she will come home with). Today Jeremy and I decided enough is enough and opted for Penelope to have a gastrostomy tube (gt or gtube) placed in her stomach during her hernia surgery. Bottles are getting better, but she is still taking less than 25% of her feedings by bottle. We were given the option for me to be trained to continue putting the feeding tube through her nose, but I feel like that is too risky. There are too many things that could go wrong, and the last thing we need is an error at home that puts her back in the hospital. The gtube should be temporary until Penelope is able to take 100% of her nutrition by mouth.

So why do we need to take what seems like such a drastic step? Penelope has some serious facial and oral aversions. She spent nearly two months with a tubes in her mouth and down her throat. She gets tubes shoved down her nose frequently. She has medical tape on her face at all times, and she accidentally rips said tape off her own face several times a day. Her first few weeks of bottle feeding were painful from the acid reflux, aspiration, and gas pain caused by swallowing air from the high flow. She is also now at a developmental stage that she should be better at it than she is. Sure we could skip this gtube and stay in the hospital until she figures it out. That could be a few more weeks, or a few more months.

So as hard as it was to make this particular choice I know in my heart that it is the best thing for her. She can come home and not have people poking at her every 3 hours. She can still practice bottle feeding when she feels like it, but there won't be the added stress if she's just not up to it. As she gets older we can give her treats like popsicles or suckers to help her become more comfortable with using her mouth. It's going to be a long road, but as I've said millions of times before, I can do ANYTHING if we are home!

So tomorrow morning I should hear from Pediatric Surgery to schedule the procedures. We will have to move back to Bay 2 or 3 after surgery because she will be intubated and on an IV for pain control. The good news they figure we should be discharged 7-10 days after the surgery!  WE WILL BE HOME IN LESS THAN TWO WEEKS!