Merry Christmas

We had some great gifts from the girls when we got to the hospital for Christmas, they had pictures taken in stockings and pictures taken together! Over the last week the girls have really grown. You can see that they are looking more like typical babies. Their bellies are getting round and they seem longer. They both gained 1/2 pound in the week.

Taya is still doing well. She is teetering on the line of needing a blood transfusion. Both girls had eye exams, they definately don't like this much, but an ok report, slightly premature. Haylen was able to get her PIC line out. This meant they had to give her antibiotic through regular IV and because they have used so many she got to wear what we call her party hat. This is when they put an IV in her head and cover it with a medicine cup so it looks like a party hat. She has since had her last antibiotic. She then also got a bath.

The girls had a big present for the grandparents for Christmas. Since they hit a weight requirement they could begin to be in their isolettes without the temperature prob so that they learn to regulate their own temps. They did well so this means that they can come out to be held 2times in a day. They did good with this also, so we had the option to let grandparents hold them! The girls (and the grandparents) did very well!

Negative Bone Scan

Haylen made her first trip out of the NICU yesterday for her bone scan in radiology. You would have thought she was going to make a snowman based on how she was dressed. Yes dressed! We had to put clothes on her because it was going to be much colder than what she was used to. So we put on premie clothes, which didn't fit at all, 3 layers in fact. She was not sure what was going on - her eyes were wide and she didn't move her arms. She then was wrapped in 2 blankets and put in a transport isolette. She got many looks on her way to the basement but didn't seem to mind much. The test shows some infection around the bone in the tissues, but not the bone itself! Today she is dealing with fluid in her lungs and having to increase in oxygen needs, otherwise ok.

1 month!!!!

We are finding out the girls have even more spunk than we thought. Over the last few days Haylen has found out how to CONSISTENTLY pull out her feeding tube including the tape holding it on her face. She even did it the last time with mittens on her hand. Saturday she got to go on regular cannula oxygen but had to go back on vapotherm today. May be due to increase in feedings and the continued swelling and infection, so that is ok. She is doing to be at her goal food by tomorrow and they will start to fortify it for calories. Today she went for a bone scan to rule out bone infection after all.

Taya is still doing about the same. She is slowly decreasing her oxygen on vapotherm so she will get there sometime. Not much is new with her which is good.

Both girls got some fun new pictures for their big 1 month birthday. They got new Christmas hats and blankets that are donated from people that quilt or knit for the NICU. They are both over 3 pounds and seem to be growing. Their arms and legs are filling out along with the tummies.

Look Mom, No Hats and New Hats

Here are new pictures of the girls with their new hats and finally pictures of them without their CPAP hats and tubes on their faces. It's great that we can see their faces.

Haylen's tests are showing negative for spreading to other areas. She continues to be on antibiotics and has started her feedings again. She did receive another PIC line for antibiotics and fluids. We do get to hold her again because things are going better.

Taya has switched to a three hour schedule from a four hour schedule. She now eats for two hours and then has an hour break. Progressing to one hour with a two hour break in the next few days. Amy was fortunate to hold her swaddled in a blanket today.


Pictures top to bottom:
Haylen with her purple pacifier
Taya getting cares from Amy
Haylen kangarooing with Clint
Taya kangarooing with Clint

Getting Better!

Haylen is doing much better. Her swelling has improved and the only part left is a bit in her leg. They are keeping her on antibiotics for probably 2 weeks and still no feedings for now. They did rule out a clot and herniation. I think they are going to cancel the ortho screen for today to rule out infection in the bone. They screened the spinal fluid for infection and will get results today. She is much more feisty and moving around even awake more! This is all good. They have been having trouble with her IVs staying working, so they needed access to head veins to use for IVs so they had to change oxygen machines which is great because it is a step in the right direction, plus she no longer has the hat and big tubes on her face so we can SEE HER!!!!

Taya did well over the weekend. Her oxygen use is decreasing so she also went to the new machine called vapotherm. We can now see her with no hat or big tubes. It now has like a nasal cannula and lots of tape and they still have a tube in their mouth, but much better! She has darker hair than Haylen. Other than that I haven't found a lot of differences.

More good and bad

Sorry for the late update. Haylen's echo showed improvement in her PDA and she is off that medication and no surgery, however... In the night she developed a rash and swelling. The swelling is pretty significant and they have determined that she has a infection in her blood. They are treating with antibiotics and have also found that she has low IgG levels and are giving her that treatment as well. She is puffy and pretty much just hanging out and not moving much. You can tell she just doesn't feel well but she isn't complaining much.

Yesterday both girls lowered their pressure on the CPAP and did well with it.

Taya is gaining weight well and will hopefully change to a different type of oxygen in the next few days.

So we had a big scare but she seems to be tolerating without too many setbacks so I will update as we go.

Pictures

Clint was putting Taya back after holding her - still so small!
Haylen has taken to this pacifier in the last few days.


These hand turkeys are done with the night nurses like the other ones. I had to add this for the girls at work who have trouble making them!

The good and the bad

Sorry for the long delay in posting. I guess I don't know what we have been doing, but not bringing the computer with us to the hospital. Taya is now at goal feeding meaning, she is still getting the feeding tube of breast milk continuously but as high as they will go for now. Because of this she was able to get rid of her pic line for the other fluids and nutrients. Once this came out we were able to give her a "bath" or a bit of soap on a washcloth, but we were able to take off her hat for her oxygen while the nurse held it in place, so we could see her head and her DARK hair!

Haylen has just a little set back in that her PDA or murmur is back and bigger than before. This means she has to stop eating for 3 days and go back to IV fluids. She will be getting meds for 3 days then recheck her heart thursday. They will likely either be pleased or look at surgery on friday. Over the last few weeks you have probably heard us talk about it opening, closing and back and forth, so we aren't too concerned yet.

Both girls have lost their cords. Taya has an outie. They are tolerating kangaroo holding well so that now we can do it daily instead of every other.

I guess that is about all of the updates for now, I will post some pictures in a little while.

Try again on Kangarooing:Clint 1, squirrel 0

Last night we didn't hold the girls because Haylen had some feeding issues, so she couldn't come out and we opted to wait to hold both of them. As they are getting more in their feedings they have to adjust to that, plus yesterday they fortified the breast milk for additional nutrition, and finally the feeding tube traps gas in their stomach so sometimes that upsets them. We don't know what it was but she wasn't digesting as she should and had higher oxygen levels.

Today Taya must have been jealous of the attention that Haylen got last night because she had a few episodes of low respiration and heart rate. She is know around there as the feisty one and the nurses say the girls do get jealous and ring off when the other gets attention. So we will head up there again tonight to see if they are behaving enough to be held tonight.

We had some excitement in the attic last night. Lets just say Clint went squirrel hunting and found one in a vent from the roof! He got it out today and I got it on video. We also have videos of the girls but are still learning how to download them.

Not much has been new this week. The girls continue to eat more and tolerate it well. It sounds like this weekend they may start taking away some of their other IV supplements and adding it to the milk. It will be great to get rid of a few wires!

The girls had a 2 week head US and heart echo. The US is normal and the heart echo shows good improvement. The cardiologist thinks it is ok to do no treatment at this time and check again later. This is nice, otherwise they have to stop feedings for meds or look towards surgery.

Today the nurses brought donated Christmas blankets for covering their isolettes. The blankets are needed to help block out light, sounds, and help stabilize warmth.

Tomorrow I have a check up and have been feeling better so I am guessing things will be good there.

Tonight is another Kangaroo night so we will be heading up there shortly :)