Here she is at about 9:00am. We're stopped at the gas station on our way to see Athena (Dr. Sudel's nurse) at the U.

Reading with Daddy while we waited.

We were somewhat concerned about using the new formula (Peptamen Junior) because of her allergy to milk. As soon as Paigey's appointment started we let her take a few swigs so we could monitor her and look for any signs of allergic reaction. It is NOT meant to be taken orally....for a reason...the flavor on the can is labeled "unflavored". She cringed but did end up taking two big gulps. She tolerated it well and as of....10:21pm.....has been doing fine with it.

Next came the actual placement of the tube. Paige was already a little tired an orny, so she ran around the exam room while Mike and I asked 10,000 questions.

Since Mike and I will be the ones re-placing the tubes when they inevitiably come out, I thought it made the most sence to place Paige's tube today myself. It worked out fine because as knowledgable as Athena was at answering our questions, she was pretty spazzy and useless when the tube actually went in.

Mike sat on the exam table holding her arms and head. I measured the tube from her nostril, around her ear, down to her breastbone, plus about two centimeters. I marked the tube, lubricated the end in....ahem....well....'lubricant'....and shoved it in.

There was some resistance at the back of Paigey's throat and based on her reaction it was none too comfortable. once we passed that area the tube slid down fairly easily.

Unfortunatly it triggered a major gag reflex on Paigey, so she spent the next two minutes or so gagging, crying, vomiting etc....we just held a little bucket up for her and did our best to settle her down.

While all this was happening, Athena was kind of running around the room, looking for the tape she didn't have ready and so on. She eventually taped the tube. The she added a second piece because Paige's face had gotten so wet from crying.

She also forgot to tell us until about a minute in to the ordeal that pulling the metal wire that is inside the tube, out of the tube, would help her to stop gagging.

Unfortunatly, as soon as I took my hand off the tube it came 3 or 4 centimeters out her nose. Athena rigged up a steri strip to put right over Paigey's nose and that hleped a lot.

We (cross your fingers) can leave the tube in for 30 days before we need to go through this part of the preocess again. We will need to replace the tape every couple of days as needed and we'll flush out the tube with a little water in a syringe before and after every feed.

I asked Athena if we needed to worry about things getting in or out of the tube. Esentially, anything that gets in the tube (ie bathwater) is probably someting she would've gotten in her mouth anyway. Anything that comes out of the tube is...well...its stomach contents...so...you know...just deal with it the way you would deal with vomit.



Here she is immediatly after the tube went in. Inside, the tube is down her nose, throat, and a few centimeters into her stomach. Outside, it is taped to her face, looped behind her ear, and the "slack" is safety pinned to her shirt.

We needed to confirm that the tube was in the correct place (stomach vs. lungs). Two things we did today and will do from no on after a tube is place is attach a syringe the the end of the tube and pull OUT. If we see stomach contents, we're in the right place. The other test is to push air IN to the tube and listen with a stethoscope for blurping noises in her tummy. They also confirmed the placement with an x-ray today.

Here she is waiting for her X-ray. These pictures were taken around 20 minutes after the tube went in. You can see she was back to her old self pretty quickly.

Having the X-ray done.

We we're at the U longer than expected so we rushed home for lunch and to meet Miranda (Pediatric Home Service) around 1:30 pm. Paigey ate pretty well. PB & J 1/2 banana and a couple ounces of milk. Paige hit the hay and Miranda gave us the scoop on using and maintaining the food pump. Why is her finger in her ear in the picture above? More on that later....

We learned how to fill and prime the foodbags, program the pump for the correct rate and dose, attach the tubes to the pump and to the baby, attach the pump and bag to the crib, use an extender tube.....lets just say that Paige won't be on any sleepovers for a long LONG time. Getting the tube in was bad, nay, barbaric....but actually using the pump is a lot more complicated than I realized.




I was pretty disappointed how un-user friendly the whole get up was. There is no good way to attach the pump to the crib, to the bag, to the baby. Miranda metnioned families who've had luck with plant hooks, rubber bands, shoelaces....I mean come ON!

We actually ended up using these little rubber hooks/carabeaners that are actaully to attach the diaperbag to the stroller. One of them is holding the food bag and the other is holding a little backpack that came with the pump. Since she needs to be hooked up for 12 hours, but the formula can only be unrefridgerated for 8 (sigh) we need to give her 1/2 a dose at bedtime and the other half 6 hours later. Tonight (tomorrow morning?) we will get up around 3am, turn off the pump, cinch Paigey's tube, unhook her, plug her back up, unhook the food bag, unhook the backpack, go into the hallway, open the bag, refill it with 120 more mls, reomve the air, prime the tube, reprogram the pump, rehang the bag & pump, cinch Paige'y tube, reattatch her, and re-start the pump.

The worst part is we ALL need to rest. Between rushing to leave school, Grandpa's funeral, and today with Paige I've Never felt so tired. After Miranda left we went out to Linda's to play in the "bouncy house" she rented for the last day of daycare. We also neded to find some old-timey diaper pins so we headed to northtown. It had become apparent by that point that all the ear tugging, head tilting, and crying was probably for a reason. Mike took Paigey to urgent care and sure enough....another ear infection. I needed a break. Mike needed a break. We we're both very sensitive to eachothers criticism and we we're criticising each other liberally. We both knew that the other was having a terrible day, we just didn't have anything to give the other in the way of support or comfort. I rested. Mike got some good playtime with Paige. Things got easier once she was hooked up and sleeping and we could breath....and eat...

Here are a few more pictures. I'll post a few more details about Paige's upcoming surgery tomorrow.