Results are…

…Brinnile’s eyes are there!  Her right eye made it last week and yesterday they checked, and the left was there!  What does this mean?  They started her on the Viagra and will do an echocardiogram in a couple days to check her pulmonary hypertension (PH) and to see if they can start to wean the nitric oxide down.  A week and some, her nitric level was 10 parts per million (ppm) and she was doing great!  They weaned it down to 5, and she began to not eat…another echo:  her PH gradient was up to mid 50’s, from 20’s when she came down from the very first at diagnosis (80’s then).  So, they went back to 10 ppm on the nitric.  The next time we went, it was last Saturday night after Chuck-E-Cheese (see later in the post) and they came and weaned it down to 5.  A little concerned, but not too much.  Monday I went during the day and she was completely off the nitric oxide and her oxygen levels were at .2 liters and room air, even off oxygen completely for some of the time!  Great!  They were talking about getting off completely and not needing it in a couple days…the NP before had ordered an echo for that day which the current NP said she didn’t know why she needed it with her  oxygen being so great…results from the echo came---her gradient was 88!  As high as when she was first diagnosed, which meant going back on nitric oxide at 20 ppm.  Since her right eye was vascularized and the left was so close, they ordered the exam for yesterday (the eye Dr was going to wait another week) in hopes they could start the Viagra to wean the nitric---like I said, it was ready and here we are, wait and see.  It will take a few days to get her meds worked out and to wean the nitric oxide, hopefully she will be feeling up to get going on her feeds again, but we know she can some home with the NG tube if needed---we’ll see how the next little bit goes, and maybe…

As for the rest of the family, we are good.  It’s county fair time and we got the parade over with last night---for those of you there, yes it was me in the cow costume---the kids had fun riding on the truck with the Ambassador and Delegates.  Tomorrow is the show and the kids are so excited to walk the calved around and get some ride money.  They also submitted art work to get a dollar.  The fair makes for a fun last hoorah before school next week, crazy!  Gunnar will be in 1st, and Macie in Kindergarten!  They’re looking forward to it though, honestly I am too!

Last week Macie and I went to girl’s camp with the YW in our ward.  It made for a nice distraction from things and it was a great experience.  We have the most wonderful girls in our ward and being around them was so uplifting!  Parents reading this, be proud of your girls, they are amazing and such great examples!

We camped up the canyon to Minnetonka Cave by Bear Lake.  On our way up, Macie and I stopped at Rick’s Springs to check it out…kind of cool.

Macie had a lot of fun being at camp with the “big girls”…they included her in everything they did---thanks girls!  We did various activities and got to know great leaders and girls…she also had fun with the camera.

For Macie’s 5th birthday we took the family to Chuck-E-Cheese!  Logan came along, after all, he is part of our family too!  The kids had a blast and even Trevor and I had a bit of fun.  We were pleased that it was pretty reasonably priced for what we got too.

  

Sunday night was her official birthday so we got together with Trevor’s family and had cake and creamies…

 

We will be getting together the Johnson side in September when Stacey and her kids are here, and will celebrate Brandon, Sydney, and Macie’s birthday together…can’t wait, it will be fun!

Happy 5 years Mace-bee!!

Not Today

Brinnlie's eyes have improved again, but aren't where they need to be to consider coming home. The Eye Dr. wants to check them in 2 weeks---so, our timeline is at least 2 more weeks, then we'll go from there.

Catch-Up With Pictures

I was thinking that I should post again so I cleaned my camera and found some pics to share…

This one is of Broxton after pulling the medical ‘glue’ off his eye after tolerating it for a few days. He was playing at his Grandma Gardner’s one day and met the fireplace. He didn’t like the band-aid either, but it stayed on longer than the glue---His eyebrow is still bare at the point of impact :)

24th of July at my parents house…

It’s been great to see Justin a couple times while he’s here on leave! He and Stephanie came to the hospital the day he got in and spent a little time with Brinnlie. It was so sweet to hear Justin talk with her and tell her to ‘keep fighting’ and that she’s such a strong little one and example to him! He’s the example and I’m grateful that we’re able to stay in touch and grow from each other's experiences and testimonies---thanks Justin for being willing to serve for our freedoms and for being a faithful servant of the Lord!

The couple days following the development of pulmonary hypertension and receiving treatment, Brinnlie started acting like herself again. They put her on nitric oxide to help decrease the pressure in her lungs and since, has been weaned by half, with her oxygen levels a little better. Before the diagnosis, her oxygen levels had increased from .4 liter flow to 3 liters and from room air (21%) to 88%---so, there was definitely something going on. When I went that Tuesday for my visit, she looked bad and I was so scared. She wasn’t awake or alert, just lying still and struggling with every breath. By some “coincidence”, the nurse practitioner that had just come into rotation a couple days prior and assigned to Brinnlie, just happened to be an expert in pulmonary hypertension and has done a lot of research with it; thus, seeing Brinnlie, found this to be her struggle and was able to begin treatment. I called Trevor that Tuesday afternoon and he and KC were on their way to give her a blessing. Within the hours after, her levels started receding and she was beginning to look better. Trevor and I stayed through the night and later Wednesday evening made our way home, as she was increasingly coming along. We went every night for the next week and some and now, she’s doing fantastic! She’s still on 2 liters flow, but is at room air again and even high sats sometimes with this. They can’t turn the flow down until the nitric oxide is gone, which won't happen until her eyes are vascularized. When this happens (we’re told she’s so close) they will put her on a medicine that works the same as the nitric oxide, but is detrimental to the eyes if not vascul;arized. She can’t come home on the nitric oxide because it is blended with the oxygen and has to be constantly monitored with the special equipment (this is my understanding anyway). If you notice in the following pictures…something missing?

Her NG (feeding) Tube!

That’s right, she’s been such a trooper and when she finally started coming around, she was starving! She hasn’t looked back since, taking every feeding by bottle and is gaining really well. Last weigh in was 6 pounds 12 ounces! She will be the biggest baby that we bring home from the hospital. Gunnar and Broxton being about 4 1/2 to 5 pounds, and Macie was 6 lbs 5 ozs (Macie weighed more than the other 3 combined when she was born!) So, for the moment, it’s the same old story; we’re waiting for Brinnlie’s eyes to be vascularized and the ok from the ophthalmologist to begin the other medicine (it’s called Viagra, by the way) and then a few days to see if she tolerates it, while weaning the rest of the nitric oxide, and hopefully she can “make her escape”! Wednesday is her next exam---keeping our fingers crossed.

This past Tuesday, Broxton had his tonsils and adenoids out. He was such a trooper, but he’s had a hard time. When he had his surgery last year, he bounced back so fast, that we thought that hopefully this time it wasn’t going to be such a rough time either. Not the case. We had to to be at the hospital at 6:15 that morning, and then after waiting 2 hours for the doctor to get there, around 8:00 they took him back. At 8:20 the Dr. came and said it went great and gave us a “souvenir”, saying that they were really big tonsils for such a little boy. Just before 9 we heard Broxton coming---he wasn’t happy. He had to stay for a couple of hours in recovery and just slept, Trevor went home and I stayed with him. The couple of hours passed and Trevor came back to get us, and we woke up Broxton to get him to drink something. He couldn’t go home until they saw that he tolerated something on his stomach, and also to take the IV out. Long story short, we didn’t make it home till 3 that afternoon, after a breathing treatment and forced water sipping. He’s been pretty good today, finally ate some solid foods, and isn’t as worn out as the past few days. He’s still hoarse, but his croupy cough is gone and he’s starting to act like himself again. Hopefully now he won’t get sick every month!

In this last picture, his smile says it all!

Logan has been such an awesome uncle! He’s offered to watch the kids countless times so that Trevor and I could go to Salt Lake. A lot of the times he’s come and put them to bed and stayed the night so we could take our time. So, when we got our van fixed (we lost a side window to a rock when Trevor and KC were coming that Tuesday), we loaded it up and brought Logan and Michelle along, and talked Brinnlie’s nurse into letting her ‘surrogate brother’ back to see her. He was so excited and continues to be such a great help.

We are truly blessed to have such great family and friends in our lives who care and are willing to help in every way they can. We’ve received many cards with well wishes and gas cards and money to help us in lightening our financial burden to get us through these past months of driving so far to see our babe. We are extremely grateful for this. It’s been hard times for everyone, and we appreciate the sacrifices that others have made to help make our visits possible. I pray that your families are blessed and that I can be as willing to serve when the opportunity arises. Thank You.