Praying for a miracle

Brinley weighed 3lbs 14oz last night, I called Sara at 530am this morning to see how Brinley did through the night and she said it was very uneventful which is good news. Unfortunately when I got to the NICU this morning Dr.Linn talked with me for a long time because Brinley's blood gas wasn't good, he said he's going to give her until Friday and if things aren't better then he wants to transport her to The Children's Hospital in Little Rock or St.Louis for a 2nd opinion. He said Brinley isn't weaning off the vent and we've given her opportunity after opportunity to try and take her off but she hasn't been able to get off, he said he feels like it's more then likely because of her PDA and he feels PDA ligation should be performed. He also said that Brinley's case isn't black and white and it would make things easier if it were but she's kind of in the gray area because her signs aren't obvious that PDA ligation is necessary but he can't see any other reason why she can't wean off the vent. If things don't improve within the next 24 hours he would like for her to be transported on Friday and then let them observe and examine her for a few days and then make a decision as to whether to do the surgery or find out what else could be causing her these problems. I've just been sick all morning, I can't help it. I don't want her to have surgery I'm afraid of there being a problem on the helicopter when they transport her, I'm afraid that she won't wake up from the anesthesia ,I'm afraid that even after the surgery she won't be able to get off the vent but mostly I'm just scared and sad because I don't want her to have to go through this, it's just terrible and my heart is just broken and I can't quit crying. I'm just praying for a miracle over the next 24 hours, that some how her oxygen level will rise up and she will be able to get off the vent and onto a CPAP machine. Please if you are reading this please pray for her. On top of all of this Dr.Linn gave me the results of Dr.Henry's eye exam yesterday and Brinley does have ROP, Dr.Henry said it was stage 1 which is actually the lowest stage so that's good news I guess we'll have to wait until her next eye exam to learn more. He had a really hard time evaluating her since she is on the oscillatory ventilator and it vibrates her plus he was running late so the dilation medicine they put in her eyes had kind of worn off. I'm not to worried about it because sometimes ignorance is bliss, and I just know it has to do with visual impairment and blindness but since it's stage 1 I know that's a good thing. No ROP at all would be best but we didn't get that lucky..
Also I dropped my camera AGAIN this morning and now it's not taking pictures, I'm going to have Brian look at it when he gets home but I'm thinking this time it might be broken for good. When I told Brian I dropped it again, he asked if I did it on purpose. Ha!. I do want a new camera but only because I dropped it a couple weeks ago and the review button and the zoom no longer worked but I've still been using it because I didn't really want to dish out $200 on a new one but we can't not have a camera right now so if Brian can't fix it then I'm going to buy a new one later tonight.
Please pray for Brinley to get off the ventilator and please pray for strength for me and Brian, we are really devastated right now.

Happy 7 weeks old Brinley

Today Brinley is seven weeks old, it's hard to believe that this time next week she'll already be two months old. Sometimes I start feeling sorry for myself and feel cheated because I'll never get these months back she's only a 1 month old 1 time and I didn't get to do any of the things most moms get to do with their newborns but when I start thinking like this I just have to remind myself that she shouldn't even be here yet and when I get her home yes she'll be a 3 month old but she'll only be doing the things that a newborn will be doing, not to mention that I should just be thanking my precious God for giving her to me to begin with. Someone just slap me, it could be so much worse and deep down I know this..

Brinley is currently on 17cc of breast milk every 3 hours, that's equivalent to approximately 4 ounces in a 24 hour period. If she's able to continue to tolerate her feeds over the next week or so, I believe they'll be removing her central line because the TPN and Lipids she's been receiving since birth is now being replaced with breast milk. As her breast milk feeds increase her TPN decreases so once the breast milk out weighs the TPN they can pull her central line, I'm sure they'll leave it in for a few days just to make sure that she doesn't have any problems. That's really exciting to me she's always had a central line and sometimes 2 other IVs running. There hasn't been many changes today, Dr.Wagle said her chest x-ray looked beautiful he said he'd like her lungs to be expanded to the 10th rib and right now their only to the 9th. I'm hoping they start turning down the peak on your ventilator Dr.Wagle said you need to be around a 12 or 13 and right now your at a 18 or 19, so we really need to concentrate on bringing those numbers down this week so we can get you off that ventilator.

Here are some pictures of Brinley at 7 weeks old.

Willow Creek Inn

Since my last post I lost my room at Willow Creek so now I'm no longer "Rooming In". I was fortunate that I got to stay until Brinley was 6 weeks old, of course I cried when they came and told me but I had to remind myself how far Brinley has come since she was born. At least now I know we'll be bringing her home, she is now up to 3 pounds 13 ounces, and I've established trust with all the nurses in the NICU. So it was much easier to leave Thursday night then it would've been 6 weeks ago.

Brinley was put back on the ventilator Thursday night, she was actually maintaining on the CPAP vent but her chest x-ray showed her left lung to be completely whited out and Dr.Wagle felt there was no way she'd be able to maintain it long term so it was best to put her back on the vent and let her body rest and heal and make a go at putting her on a traditional CPAP sometime this week. Dr.Wagle said her sputum culture had come back and revealed she has Pseudomonas, Dr.Wagle said it was very common for anyone who is on the vent for a long period of time to get this bacteria in their lungs because it stays wet and damp. He started her on Vacamyacin and feels confident that it will kill the bacteria and also prevent her from developing ventilator associated pneumonia.

My sister made Brinley this sweet little flower headband, I thought it was to cute..

Last night when we got back to the NICU the nurse had removed Brinley feeding tube from her throat and put it in her nose, I knew whenever they started introducing her to the bottle and breast feeding that the tube would be moved to the nose I don't know if this means we're getting close or if it was because she just wanted to give her mouth a rest since she already has the ventilator tube in it. I choose to believe it's because we are getting close to the time that they're going to start offering her a bottle Oh I pray this is true...I know they won't be able to feed her a bottle until she gets off the vent, but I'm hopeful that will happen this week.My sister made Brinley this cute little Tutu, I can't wait to put her in it. Thank you Aunt Christy.Her and her friend Amber also made Brinley this sweet little pillow case dress, I love it I think it's just precious.

Coincidence? I think not...

This morning I sent a email to our family and friends asking them to pray for Brinley to get off the ventilator and onto a CPAP machine. When I got up to the NICU there was a new face at Brinley's bed, turns out he was an expert on the ventilator that Brinley's on. He was talking with the Respiratory therapist and Dr.Wagle about Brinley and then they started adjusted the depth of her ventilator tube and pushing buttons on her ventilator machine, and within 30 minutes Dr.Wagle came to me and said "she's now on CPAP" It was like God saying ask and you shall receive. I asked how can that be she still has the ventilator tube down her throat and he said it's a more invasive CPAP but she's doing all the breathing on her own. WOW!! I'm so happy, she's only been on the CPAP for 2 hours now so there is a chance they'll have to go back to her old settings but for now things are looking really good. He said if she can tolerate this we will start lowering her settings every 12 hours, until she is stable enough to go to a regular CPAP. Things are looking really good right now, and I have faith that she'll continue to do good.

I love my little fuzzy headed baby!!

Finally after 11 long days I got to hold my sweet baby, she's still on the ventilator but she had a really good day today. Her nurse Stacey asked the doctor if it was okay if she got her out for me to hold and he said "YES", she tolerated it very well her oxygen sats barely dropped when she got her out of the isolete and I did kangaroo care with her for over 2 hours and the entire time she did really good her oxygen sats dropped down when we put her back up but Stacey suctioned her and she came back up fairly quickly. I'm just loving her hair, she's had 2 different IV's in her head this week so I was afraid when they pulled the tape off that some of her hair would have to be removed but they've done an excellent job removing the tape without pulling out her hair. I just love it when it's stuck up all over her head, I think it's just precious and I can't wait to take pictures of it..

Polka dots or Paisleys??

Brinley has been heavily sedated all day today, she was moving a little tonight but this morning and this afternoon she was sleeping and not moving a muscle. Personally I would rather see her sleeping soundly and not struggling and fighting with the ventilator tube. It's so hard for me to watch her when she gets agitated I just want to pick her up and lay her on my shoulder and rock her, tonight I finally just looked at her nurse Sara and said " okay I'm leaving" I tried everything I knew to do to calm her, but it only made things worse. She just doesn't want to be touched or talked to right now.. Today Brinley's nurse was Stacy (our favorite nurse)Brian and I absolutely love Stacy and we feel more comfortable leaving when Stacy's her nurse then any other time. We found out earlier in the week Stacy would be her nurse today so we made tentative plans (depended on how Brinley was doing) to go home today and finish painting Brinley's room and get her baby bed and changing table set up.
Final coat of paint is FINALLY on!!

As all of you know I've been searching endlessly for the perfect crib bedding, which I finally found and then couldn't afford.. Why does all the cute stuff have to be so expensive? I mean poor people have good taste to, couldn't they make something us common folks could afford... Anyway I finally settled for this Paisley set from JcPenney's which I have to admit when I received I actually liked it better then I did when I ordered it online, and then last weekend when we went to pick up Brinley's baby bed and changing table I found a set at "The Baby's room" that I also REALLY liked and it was super cheap so I got it also and decided that once the bed was set up I'd put both sets on the bed and decide then which one I wanted to keep.. Of course it couldn't be that easy, now I know which one I like better but Brian likes the other one (wouldn't you know it) so this leads me to ask all of you for advice. Please tell me which set you like better the Polka dots/stripes or the Paisley set?

Swollen little toes

Brinley continues to make progress, sometimes you can't always see the progress but any day that she doesn't have a set back is progress... Today really the only change I seen was how swollen she is. I asked the nurse what causes her to swell and she said it's just due to the infection and that because she's sick her kidneys aren't functioning correctly and also being on the ventilator and the fact that she's not getting the amount of protein she needs through her TPN. Brinley weighed 3 pounds this morning, I can't believe she's already 3 pounds and over 5 weeks old. This month has already flown by and I'm already kicking myself for not taking more pictures when she was smaller, I'll never get that age or size back. It's not like I didn't take alot of pictures because trust me I did, I just wish I would've taken more of her small little features like her hands, feet, face, etc. and not so many of just her over all body.
This morning we went and ate breakfast at Susan's we had never eaten there before but Cari one of Brinley's nurses recommended it so we thought we'd give it a try and we loved it. She told us about these homemade cinnamon rolls they have we both wanted eggs for breakfast but we ordered a cinnamon roll to go and ate it this afternoon and it was very delicious and I'm sure fat free. Ha! (It was the size of a dinner plate)

Tonight we went to Razorback Pizza and met up with family for Cody and Courtney's birthday party, it was nice to get together and visit with everyone. It's hard to believe that another year has already passed it just seems like a couple of months ago that I was searching for the perfect birthday present for Courtney's 13th birthday and now she's already 14.. I'm feeling old...At the party Karen gave me a gift for Brinley it was the cutest little bow and socks with her initial on them, so sweet I just love them.. I actually had bought this outfit for her a week or so ago and wanted the bow and socks but they didn't have her initial so Karen seen them today and got them for her, and not only did Karen get them for her so did Jeanne. As you can tell Brinley is already very spoiled, I'm so lucky to have so many people that love her so much..