blogvost.com: May 2010

Monday, May 31, 2010

Quick update

Jessie and I are checked out and at home.

We got in early for our 5:00 visit and the first thing we noticed was their belly tubes were gone. The nurse practitioner had decided since they had started eating and their air buildup was not too bad it could come out. Evie got her first bath and then I fed her a bottle while Jessie changed then nursed and bottlefed Ben. The nurse decided to see if she could handle 10 mL breast milk, and she finished it in about 15 seconds. She got another 10 mL and gulped that down too, so then she got another 5 mL. We decided to stop there but she was still awake and making sucking faces so I bet she will be able to eat even more next time. Jessie started out breastfeeding Ben and he latched right away and ate for 10 solid minutes, then had part of a bottle. It seems like taking the tube out of their mouths made a huge difference.

Evie before her bath, no mouth tube!

Evie's first bath

Ben before eating, no mouth tube!

Evie after her bath

Ben after he ate

2:00 NICU visit, 5/31

When we got to the NICU for the 2:00 visit the nurse practitioner had just finished up writing new orders for the babies. Ben's cannula was reduced to 1L/minute. Both babies' feedings go from 12 mL per 3 hours to "volume as tolerated" every 3 hours, meaning they will eat whatever they want. Both babies tried breastfeeding and are starting to get the hang of it. I fed Ben and he was ready to eat this time. The most he had eating was 12 mL and this time he had 22 mL. Evie ate more than last time too. Both babies' IV fluids were decreased because they will be getting more milk, which should make them hungrier and easier to feed. The nurse practitioner even said he'd like to get them off IV in a day or two which is really good news. We are going back in at 4:30 for Evie's first bath.

11:00 AM visit update

At the 11:00 AM we changed both diapers and did temperatures. Both babies had oxygen level drops while we were out and were having some trouble keeping their oxygen saturation up while we were there. Ben hadn't digested any of his milk so they pulled it out. He didn't want to eat at first but when the nurse held him on his side in a breast feeding type position he finished his bottle. Evie tried breast feeding a little then ate most of her bottle. The nurse says we can bathe her if we come by a little early next visit.

Jessie is doing really well and is going to be discharged today, but that means we will be leaving without the babies. We are trying to figure out how we can be with them as much as possible. It looks like that we will start with the 8 AM visit and go through the 8 PM visit. Our visits are taking between 1-1.5 hours right now so we will probably be hanging out in the waiting room a lot while the babies sleep and trying to get out to eat sometimes.

It was sunnier so I was able to use my wider angle lens. Here is a shot of our NICU area featuring Evelyn and her new forehead IV. We have the curtains pulled around for privacy.

A couple pictures from our 11:00 visit last night

At our 11:00 visit last night...

Ben was wide awake...

but Evie was ready for bed.

Morning update, 5/31

(5/30) We went in for an 11 PM visit tonight. Jessie tried breastfeeding both babies for five minutes, then we fed them bottles. I fed Ben and Jessie fed Evie. I changed both of their diapers too. I asked the nurse when they would be looking to adjust Ben's oxygen and she said they would probably reevaluate tomorrow morning sometime when the neonatologist comes by. Ben threw up on me after he ate about half his bottle so the nurse put in the rest through his tube. Ben was more active than he has been lately. He opened his eyes and looked around for a long time. Evie was active at first but fell asleep. They already have noticeably different personalities.

(5/31) At our 8:00 Ben was awake when we showed up so we were hoping he would be willing to give nursing another try after his diaper change. He didn't feel liking sucking so eventually Jessie switched him to a bottle and he had his 12 mL of breast milk. While Jessie was feeding him I changed Evie. They had her back on the cannula pumping in room air at 1L/minute. Ben is still at around 25-27% at 2L/minute. She was awake and looking ready to eat but she had kicked her IV out of place so the nurse needed to change that. I held her pacifier and she grabbed my hand and didn't cry too much while they were trying to get the new IV in. We had to leave at 9:30 to get Jessie's medicine and start pumping and they still didn't have the IV in.

Quick update: I stopped in at 10:20 to drop off some milk and they had the IV in her head.

Sunday, May 30, 2010

More pictures from 5/30

When we got to the NICU at 5:00, Evie was laying on her bed with no hood and no cannula. She is now breathing with no assistance and doing fine. Her breathing still got a little fast sometimes so they decided not to try bottle or breast feeding right away, but she did get her 6 mL of breast milk through her mouth tube. Ben had 12 mL of formula in a bottle and I got to hold him for a while afterwards. We were talking about what we were going to do when we got out of the hospital and he threw up.

At our 8:00 visit the nurse had already changed Ben and he was ready to try nursing when we got in. He was too sleepy to do much but he did have a 12 mL bottle. The nurse said he digested what stayed in of his last bottle fine. While Jessie fed Ben I changed Evie. She was wide awake and wanted her pacifier so as soon as Ben was done with his bottle Jessie moved over to Evie's bed to try breast feeding with her. She got the idea right away and did 5 minutes on each side, then had 6 mL pumped milk from a bottle. She spit up a little bit afterwards. They both still have the tube in their mouth that they have to suck around so when those come out we should see even more improvement. Evie is doing fine now on room air, but Ben still has his cannula in at around 27% oxygen and 2L/unit time. We haven't heard anything about when he will be able to get off of that.

The first time we saw Evie after her hood came off

Trying to get her pacifier into her mouth

Brian and Ben

Ben relaxing

Evie relaxing

Ben having another bottle

Evelyn's first bottle

Hiccups 2

Evie got the hiccups after her first bottle:

2:00 NICU visit, 5/30

When we got to the NICU for our 2:00 visit Evie was still in her hood but it was turned all the way down to 21% oxygen, which is normal air level. She will probably be back on the cannula (nose tube) later on but her breathing has improved a lot. The nurse practitioner is planning to start feeding her at our 5:00 visit. It sounds like she is going to skip the feeding tube and go straight to trying breast feeding and the bottle. She will start with 6 mL per feeding like Ben did. She enjoys her pacifier much more than Ben does so I am thinking she will figure out nursing or bottle feeding pretty easily. Jessie tried nursing again with Ben. He was too sleepy to do much. The nurse practitioner was ready to double his feedings to 12 mL every 3 hours. She also said we can start trying a bottle instead of the feeding tube. It took him a couple minutes to get used to it, but he drank all of his 12 mL of breast milk we had turned in plus a bonus 2 mL of formula.

I asked how much milk babies their size need for 100% of their nutrition. They don't like to give definite answers but the range I got was between 1.5-2.0 oz per feeding, and between 3 and 4 hours between feedings. So between 9-16 oz per day of milk per baby at this weight, in the nurse's estimation. Ben's intake at 12 mL per feeding is about 3.25 oz per day and increasing. This was a good visit with very positive news for both babies.

I got some pictures of Ben with his first bottle. I will get some of Evie as soon as she is out of her hood and ready to pose.

Ben's first bottle

Updated belly animation

I added the final picture to the belly animation I put up earlier. It is a big file so it is after the page break. You may have to click on the picture to make it play.

Quick update on Evelyn

We were able to speak to a nurse practitioner at our 11:00 AM visit. Evie had an x-ray at 8:00 AM which showed her pneumothorax is mostly closed. Her tent air was moved from 100% oxygen to 60% and the plan is to wean her off the oxygen in the tent for now. It sounded like they have plans to start her with feedings pretty soon but we weren't able to get details on that and the practitioner didn't show up again. Right now Ben is eating 6 mL every 3 hours.

A couple pictures

Evie under her hood

Ben smiling at Mom

5/29, Hospital Stay Day 3

I woke up shortly before our 8:00 visit and ate some breakfast my parents brought by and then we headed over to the NICU. Jessie walked all the way there and back. When we got there a nurse told us that they had x-rayed the babies' chests and Evie had an air pocket on the side of her lung which had been causing trouble breathing. They were able to treat it by venting it with a needle and since then her respiratory rate was way down, which is very good. Apparently the lung issue is not uncommon in preterm babies and although there is a chance it could come back in the next couple days, once her lungs heal up a little bit it will be gone for good. They both still had their belly tubes in when we got there, but Evie pulled hers out on her own and they won't put it back unless her belly gets puffed up, and Ben got his out to try nursing again.

5/28, Hospital Stay Day 2

Around 5:45 I decided to get up and see how the babies were doing because the NICU is closed from 6:30-8 AM and PM. At this point the GFR symptoms were still present but better. Both babies had plastic nose tubes to push air in and a stomach tube to suck air out that gets pushed in by the nose tube. There wasn't much I could do so I checked on Jessie then went to get breakfast at the cafeteria. When I paid I got two brand new 2010 pennies in my change, one for each of the babies.

5/27, Hospital Stay Day 1

I have been typing up a summary of what has happened over the past few days when I get a chance. I let Jessie read over it so I will put it up now. It is long so I will put it in three posts. Part one, 5/27 is after the page break.