Things are steady...

...that's it, they are steady.

Brinnlie has improved over the last few days and is doing well. She still has some obstacles to overcome, but, we are grateful that we've been blessed with such a strong little spirit!

I am truly thankful for all the prayers sent our way again, and continually. They have been heartfelt and truly are heard. I am very thankful for the power of the Priesthood and that I can rely on Trevor and close ones whenever in need...it's comforting to feel of the Savior's love through the words spoken through His power.

As always: Patience.

Jinxed Again

We’ve had quite the few days.

We’ve gone from getting ready to bring Brinnlie home to now looking at a few more weeks.

Last Thursday I went to spend the afternoon and evening with her and feed her.  When I got there the nurse said that they had taken a chest x-ray ‘cause she had been breathing fast and needed more oxygen.  They found fluid in her lungs and thought that she had aspirated when eating or because of re-flux, which put her at risk for pneumonia.  So they took labs to check for an infection and they were all normal and were going to watch her and check again Friday.  Same on Friday.  Come Saturday I received a call from the NP telling me she was doing okay, but had to go up again on oxygen.  Then he said that another issue had come up…the nurse that day had given her one feeding of breast milk, not realizing that it wasn’t mine.  How in the world this would happen and how she’d get it mixed up, we don’t understand.  To make the story short, Brinnlie has to be tested for communicable diseases that may be transferred through breast milk and the “donor” mother tested as well.  We have been reassured that the risks that something could be transferred are slim, but there’s that chance.  We’ll receive results in a couple weeks.

Sunday the NP called to give an update and had some concerns about Brinnlie eating and not eating and still needing more oxygen.  She asked if there were a possibility that I could go stay for a week to see if she would steadily eat for me and me learn the just of the NG tube so if her eyes vascularize before she takes all her feeds from the bottle, she could come home.  So we had been making plans for this to happen this next week.  We also voiced our observation that when Brinnlie had her fractures but they weren’t discovered yet, her respiratory and heart rate went up, causing her to need more oxygen too.  The NP made a note and said they’d check it out.

Today.  Call from the NP saying they took more films, found no more fractures, but did see that Brinnlie’s lungs were still inflamed and had more fluid than before.  They are going to do an EKG and sonogram of her heart to determine the extent of Pulmonary Hypertension.  The way I understand is the pressure in her lungs is higher than the rest of her body, making it hard for the heart to push blood(oxygen) through, which causes the build up of fluid, which explains her need of more oxygen.  Her need for more oxygen is hard to regulate because she can’t have too much or too little still because her eyes are not out of the woods yet---catch 22.  They started her on meds to help regulate her blood pressure in her lungs, which will over time help clear them of fluid…it may take a few weeks or a few months.  For now, our time table of home has increased and we’re back to the waiting game, coming down from our high on the roller coaster ride we’ve been on the past 5 months.  My stay will be put on hold until she gets a little better.

If I sound a little dire and to the point, I am.  Honestly, I’m having a rough time.  If it’s not one thing, it seems like it’s  another.  I’m trying and am hanging in there the best I can.

4th of July Fun & Bear Lake, Again

 

  

 

 

    

 

 

We celebrated the 4th on the 3rd at Honeyville Park---the kids had so much fun!  Then on the 5th we went to Brigham City fireworks. 

Trevor’s Grandparents have a condo timeshare and every year they go to Bear Lake and let family take turns when they can come.  Since Trevor has water and is in the middle of being busy on the farm, we thought that since we went and stayed a night already with his mom, that that would be it for Bear Lake this year.  For him yes, for me and the kids no.  Michelle decided to go this past Tuesday and Wednesday night and we tagged along.  We spent most of the time in the pools and played on the beach before coming home.  We spent Wednesday on a sail boat with friends of Michelle's and Broxton and Macie had a blast!  Gunnar spent the whole time in the cabin (me with him) with an earache, that went away when it was time to go swimming later that night :)

 

 

 

 

Carp at the marina dock that followed you from your boat to this spot by the little cafe.

 

 

They ate everything we would throw to them…including our toes as we stuck them in!

 

 

 

 

 

It was a fun little vacation!

Brinnlie update:

The Tuesday before last I had the opportunity to go to SLC after the kids swimming lessons to visit a good friend Tina and see her son Noah who we met at University way back when---he was born at 25 weeks, 2 months before Brinnlie, and has had a very similar road as Brinnlie…he’s such a cutie and is doing great.  They were at PCMC for an appointment for her oldest son and asked if we could have a ‘chance encounter’.  She visited for a bit and held Brinnlie and we got to talk.  It was fun to get together and catch up and to meet her oldest and her husband---they are a great family and we will always stay in touch!  Thanks Tina, it was fun and we will definitely do it again; and thanks again for the gift!

As for today, Brinnlie has steadily increased her bottle feeds and seems to be getting it more and more.  She just likes to be social and watch what everyone is doing instead of concentrating on eating…she’s slow, and it’s frustrating because it seems like the nurses just give up on her and don’t take time.  I wish everyday that I could just be there and do it, so, we are in the process of working things out so that I can be there more---because the times I’ve fed her, I haven’t had any problems getting her to take the whole bottle.  We’ll see what we can do.  She still has a bit of time even if she were to take all her feeds.  Her eyes are still not fully vascularized and she can’t come home until they are.  They are getting better and we received a report that the ophthalmologist gave her a great outlook for the future and thinks that they will heal very nicely, giving Brinnlie a prognosis of most likely having glasses as she gets older.  She’s still on very little oxygen, staying on room air most of the time with about .4 liter flow per hour---needing increases sometimes when eating.  They say she will most likely come home on a little bit.  Home, when?  I don’t know.

We’ll keep you posted.

*She also had her MRI and it showed she had “a normal infant brain”!  Amazing!*