Baby shower in a box

Today three boxes arrived from friends from Southern Cali filled with gifts for Emily. It turns out that former colleagues turned dear friends got together recently and held a baby shower and then sent it to us, complete with balloons and decorations. I had so much fun tearing into the boxes to see what everyone had picked out and loved it all. I'm happy they had an excuse to get together, something I'm sure they don't do enough of these days.

I'm starting to pack up preemie clothes that Emily no longer fits. I figured I would keep these. Maybe someday Emily can use them as doll clothes.

Tomorrow we head to Boise so that Aaron can have lasik surgery on his eyes. We'll spend the night so that he can have a follow up appointment Wednesday morning and stay until the afternoon since Emily has an eye appointment herself. Two adults, a newborn, and three dogs staying in the motorhome in yep, you got it, the same hospital parking lot I just spent three months. I don't plan on getting a lot of sleep...

Rolling over

doctor's visits

Yesterday we went to Twin Falls to see Emily's pediatrician. She now weighs 5 pounds and 9 ounces. The doctor commented that Emily's yellow color is fading and she's starting to look more pink. Emily had blood drawn to see how what her hematocrit (basically red blood cells) and bilirubin (the yellowish color you think of as jaundice) levels were. We won't go back to this doctor until mid October at which point we'll discuss how to take Emily of caffeine and the monitor. In the meantime, the doctor encouraged us to turn the monitor off more to start getting comfortable without it (not a problem, that thing is a nuisance to tote around with a high pitched fire like alarm that only sounds when the leads come off).

Today the home health care nurse came by for her third visit. We were only approved for four, so last week will be the last time. She just weighed Emily and took her vitals, all which were good. This nurse also commented that Emily's color seems to have improved.

Today we had a photographer come by and take newborn shots of Emily. He sent a few by email this afternoon of some of his favorites. Can't wait to see all of them!

Tomorrow we go back to Twin Falls for another visit with the pediatrician. Blood work this time.

Yesterday's eye appt.

Yesterday we traveled to Boise for Emily's eye appointment. Emily has Retinopathy of Prematurity (ROP) which is abnormal growth of the blood vessels in the eyes caused by being premature. Her doctor seems to think that it's healing, but we have to go back in two weeks for another check up. It may mean that she has to wear glasses, but Aaron and I have horrible vision, so she didn't have much a chance to have excellent vision anyway.

We stopped by and visited our friends in the NICU. It was great to be a graduate finally. As of midnight they were locking the doors to everyone except moms and dads of the babies because of the swine flu. Guess we'll visit again next summer. They have Christmas parties and summer picnics every year for the nurses, doctors, and graduates. We'll skip the Christmas get together due to flu/cold/RSV season, but it will be fun to make the picnic next August.

All clean

Home health care came this afternoon to check on Emily. Only 2 more visits from her left. Checked her weight and vitals and all seems to be going well. Then this afternoon 2 fabulous friends came over with a humongous basket full of goodies from colleagues. Emily is spoiled already and I'm so fortunate to be able to work where I do (although I'm not missing it a whole lot these days!)

Today was my due date. So odd to think that with all we have been through the past several weeks, I should have been pregnant the whole time.

More visits

Today I met with someone from the Idaho Infant Toddler Program. This is the organization that will evaluate Emily on her physical and developmental progress. Once she gets evaluated, the therapists, our advocate from Infant Toddler, and us will come up with a plan. The best part of it all is that it is done in home, so we won't have to travel on winter roads or expose Emily to the extra germs throughout the winter.

The sweater is a gift from Great Grandma Marjorie.

Pediatrician's Visit

Today we met Emily's pediatrician. Emily has gained weight, she's now 5 pounds and 2 ounces and about 17 inches long. We'll go back in a week for blood tests to see if her medication needs to be adjusted and start her physical therapy. Otherwise the doctor didn't change anything, other than mentioning that if we are watching Emily directly that we can take the monitor off. However, it needs to be on if we can't directly see her or if anyone is sleeping.

Tummy time

The OT sent us with a list of exercises for Emily to do and encouraged tummy time. Here she is, she's still getting the hang of it!

All is well...

We've been home three days now and Emily's apnea monitor has only alarmed once for a spell. Her leads tend to come loose, so the alarm sounds several times a day, but at least it's due to the equipment and not her breathing.

Home...

The Hughston family is enjoying being home. Emily is really an easy going baby so far. We're still working on figuring out her schedule, which at this point is every two hours and her alert time tends to be at night. Yesterday we met with a family practice doctor here in town and met with the home care nurse who will come once a week for at least a month. Next Monday we go to meet her pediatrician and then on Thursday we go back to Boise to have an eye appointment. Which we can't go all the way to Boise without visiting our friends at the NICU.

This is the truck

that brings the baby

HOME!!!

Now what are we supposed to do?

Rooming In

Last night Aaron and I roomed in with Emily, and we are exhausted this morning! Turns out she's a noisy sleeper. It also doesn't help that we are in 1 room so when she gets up to eat, everyone is up to eat. The doctor still wants her to get at least three bottles a day fortified with the extra calorie formula. Plus, there was the 3:30 A.M. blood draw and weigh in (She officially hit FIVE POUNDS this morning) from our nurse. Aaron is currently back at the motor home getting some sleep. The dogs spent the night out there, so it was a good excuse for him to go. He did get to do his first bottle feed last night.

Day 77

Not a lot to say today. Emily took another car seat test today, but the doctor hasn't read the three hour strip yet. She definitely did better today, but I don't know if she did well enough to pass this round. She lost more weight over night, just 14 grams, but it's enough for us to stay in the NICU. She has an eye appointment on Tuesday, so we're there until at least then.

Day 76

Emily did really well during the car bed study, passing with flying colors. But she hasn't gained enough weight in the last week to get us out of here. With two strikes against us, the car seat and the weight, we're stuck here a little longer. We plan to room in Sunday night since Aaron can only get to the NICU on the weekend so we can at least cross that off our list. The doctor ordered a higher calorie fortifier to help her pack on the grams. And we're going to retest in the car seat tomorrow morning just to see what happens.

Day 75

car seat test in progress...



update: Emily failed the car seat test. Now we are onto plan B, the doctor increased her caffeine dose and we will retest using a car bed today (Friday).

Hiccups II

Day 73

They pulled out Emily's feeding tube this morning, so it's up to her now to eat. She gets to set the schedule now, getting to feed on demand and as much as she wants. She has "fallen" off the growth curve, gaining little over the past few days and actually losing weight last night, so they have increased her fortifier to 24 calories instead of 22. That means that she will have to take three bottles a day with the fortifier in it. She's doing a lot better back on caffeine.