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..

Not in her little head

I got a call around 6:30am from Sarah to let me know that Brinley's IV in her hand had infiltrated and the only place she could put her new one was in her head

This is the second time she's had to have an IV in her little head, I must tell you it really bothers me I just think it looks horrible. According to her nurse it's actually not as bad as it looks, she said there is less nerves in her head and it's ideal because it gives their little hands and feet a break and you don't have to worry about positioning.

Brinley had a good day today, she got restless a few times and they had to sedate her but other then that she is basically sleeping and trying to kick this horrible infection she has. She's still on the ventilator with about 30% oxygen and 50 bpm, they took more blood today for a second culture so far her culture from Wednesday hasn't grown anything they said they couldn't say it was for sure negative until 72 hours which will be at 3:30pm tomorrow. I'm ready for this battle to be over, I want her to open her little eyes and smile at me and I really want to hold he it's been over 9 days now since I last held her. Boo!

We went home this afternoon and washed laundry and on our way back up to the hospital around 7:30pm we say a perfect rainbow, we actually saw 2 rainbows one was perfect and the other was just a partial it was BEAUTIFUL! We actually stopped the car and got out to look at it, Brian said " look honey I think it's right over Willow Creek NICU" I almost cried. Sometimes things like that happen and you feel like it's a sign from God saying "everything going to be alright" that's how it made me feel today. Unfortunately I didn't have my camera with me so I'm not able to show you pictures you'll just have to take my word on it, it was magical.

Thank you Jesus for giving me this precious baby, she's more then I could've ever of dreamed of. Brian gets so excited (and a little annoying) because everyone that sees her says "she looks just like you" UGH!! I hope she has my curly hair...

You've got to be patient

Brinley started doing better yesterday and her culture from the day before came back negative praise the lord!! Today she's appears to be feeling better and I think she looks better, she's still sleeping ALOT but she's a one month old and that's what baby's that age do. Dr.Linn just told me her culture came back positive, he couldn't really explain it he just said we have to be patient. She is doing better she has no fever, her platelets are good, her CRP has lowered to 1.6 clinically she's doing well. He said it's not good for her to be on the ventilator this long, but we don't have a choice right now he said we must get her through this infection and then we'll start trying to wein her off the ventilator. I'm really encouraged by how well she looks today, her color is good and she's not near as swollen as she has been in the last few days. Thank you God for taking care of Brinley!!

Lord, please be with Brinley

When I first arrived to the NICU this morning I was so relieved to find Brinley looking and feeling better. Her fever had broke the night before and her platelet count was over 100 everything seemed to be getting better.. I stayed in the NICU all morning and around noon I left and went to eat lunch with my sister in law Karen I was only gone until 1:30pm but alot happened while I was out. Brinley had decided to clamp down on her intubation tube and not let any air in or out, Stacy her nurse had to pull her tube and bag her and then they decided to put her back on a CPAP machine to give her a rest from the tube in her throat. She never really did well on the CPAP and within an hour or so they were intubated her again to put her back on the ventilator. All day she has been very puffy she doesn't even look like my sweet baby, when I left from there tonight she was doing well she was resting and not fighting the tube as much. She just hates having that tube in her throat, I hope she can rest tonight and feel better tomorrow. She is so exhausted..... Her culture did come back negative today for the first time in 6 days we need to days of negatives, Dr.Linn said she'll be on antibiotics for 7-10 days and we'll just have to let her tell us when she's ready to come off the vent (when she starts breathing over it).

Brinley's stubborn infection

Brinley's culture came back positive again today, she hasn't changed much since yesterday they're keeping her pretty sedated so she doesn't move very much. I'm glad they're keeping her sedated I just want her to sleep through all of this and wake up better. Dr.Linn stopped her breast milk today, she was only getting 1cc just enough to keep her intestines stimulated but she wasn't tolerating it so he decided just to stop it. She had to get more platelets today, her count was once again low. It's very hard not to get discouraged and it's even harder to not let your mind wonder if something else is going on or if there is something you should be doing. I just don't know... Brian and I have kept strong by just imaging the day we're able to bring her home, we just know that after the infection clears up she's just going to take off like a rocket and grow big and strong and get to come home before they even expect her too..



I went to a resale shop today during lunch it's called 9 months later and it's in Lowell, I bought Brinley 3 really cute little outfits. I not much of a digger so if it's not easy to find I'm not going to dig through racks of close to find an outfit. This shop is fairly organized 10 times better then most resale shops I've been in. If your in the area you should check it out, they've got cribs, bedding, clothes, etc

Brinley has been on the ventilator since last Thursday, her infection isn't any better and her cultures continue to be positive. Dr.Wagle removed her central line today, he didn't want to remove it unless he absolutely had to because that is the line that she receives her TPN (nutrition, vitamins, etc) and her Lipids (fats) through, but since the culture has been positive for 5 days now he had no choice but to remove it. He's been wanting to do a Spinal tap since Friday morning but her platelets have been so low that he hasn't been able to do it, she's received 2 blood transfusions and they've had to give her platelets 4 times since Friday morning. Yesterday morning he consulted a Infectious disease specialist and he suggested to hold off on the spinal tap until the infection was under control and Brinley was less critical, he said the type of infection she has was rare to turn into Meningitis and he didn't feel it was worth the risk. They also repeated her Echo and her PDA (heart murmur) is still moderate in size, and isn't any larger then it was before the incident on Thursday night and in fact it was 1.6 in size on the previous Echo and was only 1.1 this time. Friday and Saturday she was so exhausted from being sick that she didn't move alot but Saturday night she started getting real restless and fighting the tube in her throat, they've been sedating her since then but I can't tell that it makes much of a difference she really wants to be off the ventilator and get that tube out of her throat and I really want her off of it too.. I haven't been able to hold her since last Tuesday, and I miss being able to kiss her little head and do Kangaroo care with her. Dr.Wagle said now that the central line is removed we should start seeing improvement within 48 hours. I really appreciate all the prayers you've been saying for Brinley, please continue to pray for her and be specific and ask God to treat the infection in her body and make her lungs strong so she can get off the ventilator.

Happy Easter

Happy Easter to everyone, I hope you had a wonderful day and got to spend it with family and friends. We went and ate lunch at my Grandma's and had a feast, and got to see most of my relatives. It was nice to get out of the hospital for awhile but at the same time your mind never completely leaves the NICU, and neither does your heart. Anytime you leave her your heart aches because you want to look in the back seat and see a car seat with your baby in it, but that dream is yet to come true. I know it'll happen one day but with her recent infection it gets discouraging because you know that it's pushed her development a couple of weeks so that's that much longer that she's going to be in the NICU.

We spoke with Dr.Wagle this morning and he told us her culture came back positive again, he said he wanted to wait to see if tomorrow culture came back positive before taking her central line out, the central line is the last thing you want to remove from her because she gets all of her nutrients and fat from that line. He also said that her platelet count was low again so he wanted her to get more platelets. They had to sedate her late last night and early this morning because as she's started feeling a little better she's gotten more aware of the tube in her throat and she doesn't like it at all. We spoke with the nurse practioner tonight and she told us that Dr.Wagle had talked with a Infectious disease specialist and that he had recommended holding off on the spinal tap for now, he said the type of infection she has rarely turns into Meningitis and with her platelets being critical low the risk out ways the benefit so it doesn't' sound like she's going to have to have a spinal tap done after all. The Infectious disease specialist also recommended stopping the Vacamyacin and just treating her infection with Ampicillin which she said actually has less side effects then the Vacamyacin. We are praying for a negative culture tomorrow morning and I hope she starts feeling and looking better, this is day 3 and I haven't notice any change in her but Dr.Wagle said her respiratory system was showing signs of her breathing more on her own. Dr.Wagle also told us she has an enlarged heart, he had mentioned this to us before but I took it as not being important because at the time I don't think it was but this morning Dr.Wagle said that Brinley might have to go ahead and have her PDA fixed once she is out of the woods with her infection, I don't understand all of this stuff but he said it's now important that we have it fixed instead of waiting until she's 1 or 2. Brian asked if it could go ahead and close up on his own and he said "No". I'm not going to even think about Heart surgery until the time comes for me to worry about it, right now my focus is on her infection and getting her over this hurdle.. Please pray that Brinley's culture is negative tomorrow and that she is feeling better.

Happy 1st Easter Brinley, Brinley got alot of nice presents for Easter. Unfortunately I didn't take my camera with me when we went to Grandma's for lunch so I could take pictures of the cute pink and purple onesis her Great Grandma bought her and her Aunt Brenda got her a pink bunny. It was all so sweet, and I wish I would of had my camera because I like to keep up with all this stuff so Brinley can look back on it when she gets older.

Isn't this the cutest little blanket and bunny? Her Grandma got her the blanket and Brian I got her the bunny it says "Jesus loves Me" and when you squeeze it's tummy it sings "Jesus loves Me" and I know Jesus loves Brinley and he is cradling her during stay in the NICU and he never leaves her side.

And my niece and Brinley's cousin Courtney got her all this cute little stuff, it's precious don't you think?

This is a picture of Brinley's isolete, the nurses took her picture last night and made that cute little Easter picture of her that you see at the foot of her bed, and they allowed us to keep her bunny rabbit in the NICU all day but we had to take it out this afternoon. We always keep a blanket on her bed because it keeps it nice and dark inside for her, she doesn't like light. I didn't take a picture of Brinley today, I just take bring myself to take her picture with that tube in her throat I just want to forget that she's ever been on this ventilator. I guess you could say I'm in denial about this but I'm not I just don't care to remember it. I hope all of you have had a great Easter, and please remember to give God the praise for all the blessings you have in your life..

Another long day for Brinley

Brinley hasn't felt much better today, the Sensitivity report came back on her culture and one of the antibiotics the doctor has her on had to be changed but the other was working. They weren't able to do her Spinal tap today because her platelet count was to low, they plan on doing it tomorrow. They gave her more blood today and also some platelets, her color looked alot better after she got the blood transfusion. As far as movement she didn't move much at all this morning but this afternoon we got her to open her eyes one time and she moved her legs some. The nurse tonight told us that the doctor had ordered some sedation meds if she needs them, she said around 7pm tonight she was pretty aggressive and fighting the ventilation tube and was just basically uncomfortable. She had moved her to her stomach and she seemed to be resting well while we were there, the nurse said if she got uncomfortable again she'd go ahead and give her the sedation meds just so she can rest a little easier. Thank you all for your prayers, please continue to pray for her

Today we went and picked up Brinley's bedroom furniture we got her crib and changing table and hutch, I also found some bedding I liked and it was soooo cheap so I picked it up.

My mom got her the cutest pink and leopard print blanket, I just love it. We plan on going home tomorrow morning and finishing the painting up, so I would love it if we could get the painting finished the furniture set up and the bedding on the bed so I can choose which bedding I like. I hope to be able to post pictures tomorrow night but we'll have to see how much we get accomplished. If Brinley's not feeling well tomorrow then none of this will get done because we won't leave the hospital if she's having problems.

I hope everyone has plans tomorrow to spend the day with family, I know the weather is supposed to be yucky but you can always hide the Easter eggs in the house. I can't wait to be able to color Easter eggs and hide them for Brinley to find. God bless all of you, thank you for your continued prayers...

Good Friday

The last 24 hours have been very hard for Brinley. It all started yesterday morning, I got to the NICU around 9am to find Brinley back on the CPAP machine (she's been off for nearly 2 weeks), her nurse Stacy told me that she was having a difficult time breathing and that Dr.Wagle had ordered a culture on her to check for an infection. All day yesterday even while on the CPAP she would have episodes where she would go 8-12 seconds without breathing and you could tell that she was just very tired she wasn't active at all and would rarely open her eyes. Around 8pm last night she completely stopped breathing and they had to bag her and work with her before she would start responding the nurse practioner Scott told me if she did that again he'd put her on a ventilator only a few minutes past before she had another real bad episode so Scott said I'm putting her on the ventilator. I went out to the receptionist desk to call Brian who was on his way to let him know he needed to come back in the meantime they all started taking care of Brinley to get her intubated and put on a ventilator. It all happened so quickly I didn't have alot of time to process it maybe that is why I was able to keep my composure. Within a few minutes that had x-ray in the room performing a chest x-ray and the nurses were drawing blood so they could run a blood gas, whenever they started intubated her they asked me to step out of the room because they said I didn't need to see this. The whole time I don't think I cried, I remember praying and once again singing to myself "Tis so sweet to trust in Jesus" I sang it over and over as to remind myself that God was in control and he was with Brinley and he was holding her and comforting her during this procedure. After about 30-45 minutes we were told we could come back in, I remember thinking "Oh this ventilator doesn't even look as bad as a CPAP machine does" because with a CPAP the device basically covers up her whole head and face but the ventilator the tube just goes in the throat. I was actually at peace when I seen her because she wasn't struggling to breath, I know she had to be so exhausted she had been struggling all day and she just needed to rest. The ventilator is now breathing for her so she doesn't have to worry about that and she can just concentrate on resting and feeling better. The culture this morning showed she has an infection in her bowel, they plan on doing a spinal tap in the morning, Dr.Wagle said he just wanted to be sure that the infection hasn't spread to her brain. Today she got another blood transfusion this is her 3rd so far, she weighed 2 pounds 11 ounces this morning and this afternoon her color was alot better. She still isn't opening her eyes alot but occasionally we'll get a peek and sometimes she'll squeeze my finger. Basically we have tried just to leave her alone all day we won't her to rest and we know that's what she needs to do until this infection gets out of her body. Please just pray that the antibiotics she's currently on will take care of her infection and that the infection hasn't spread to her brain or anywhere else in the body. I appreciate your continued prayers.

New milestone for Brinley

Brinley lost an ounce last night so she's back down to 2 pound 8.9 ounces, there's not much of anything new to report she continues to grow stronger everyday and hasn't had any set backs in the last week or so. They've started increasing the about of milk she is getting by a full cc every 12 hours, she's currently up to 11 1/2cc every 12 hours. Look at this cute little snuggly that Brinley's favorite nurse bought her...

The card actually said it was to Princess Brinley from Princess Kallie. Kallie is Stacy's 3 year old daughter that she adopted from Ethiopia when she was 11 months old. Unfortunately Brian and I weren't there when Stacy and Kallie came by so I wasn't able to meet her and I was so disappointed, but no sooner then I told Stacy that Kallie's babysitter brought her by and I got to MEET HER she is even more precious in person then she is in pictures. I would so take her home with me...

Brinley got to wear clothes yesterday for the first time, I should've posted this last night but it was really late and I just wanted to go to bed. Brinley was 28 days old yesterday and this is the first time she has had clothes on. This is a preemie outfit and you can tell that it is huge on her.

Today I went to Wal-Mart and looked around the baby department trying to decide if I wanted to register there or at Target, it's been a really tough decision because I'm so picky that nobody has what I want I'm not even sure I know what I want. hmmmm!! That might be the real problem. Anyway I decided to go with Wal-Mart because I figure everyone goes there and it'll be easier for some of my older neighbors and relatives to get there then it would be for them to go to Target. I'm not one to use a Registry when I buy gifts, I've tried them before but they always seem like more of a burden because people register for so much stuff I just find them overwhelming. I'm only registering for the more expensive items, as far as bottles and the smaller items like that people can just get me what they like. I have nothing so anything will be appreciated and more then likely I don't have it..

My shower is going to be on Sunday May 3rd, as I said earlier I'm so excited I just love party's. I've been looking online for a cute dress or an outfit to wear but so far I haven't found anything, I plan on going to the mall sometime this week to look around and see if I can find what I'm looking for. I just want something new and cute and springy, this is a special day and I want a special outfit.

He's still working on me

Today Brinley weighs 2 pounds 9.9 ounces, Dr.Wagle said her PDA is back to 1.6mm in size but that she still is gaining weight, tolerating her feedings and her respiratory system is strong so he doesn't feel like it's effecting her. Dr.Henry the eye doctor came in to see another baby in the NICU and I found out that next Tuesday he'll be doing her eye exam. I'm rather anxious for him to check her vision because I want to know that her vision is okay, when Dr.Wagle talked to us before she was born I remember him stating that micro preemies sometimes have problems with their vision so this is one more obstacle that I hope she has managed to overcome. We have been so blessed with Brinley's health up to this point, I pray all the time that God continues to heal and develop her. I'm constantly singing to her through the arm holes of the isolete, a song that I have been singing to her and possibly even the first song I sang to her was "He's still working on me". I know God is keeping his hands on Brinley and continuing to heal her from the inside out, she is my miracle baby. I'm so thankful to have this child, Brian and I have prayed for her for so long, she is an answered prayer.
God also continues to work on me, I wasn't brought up going to church that doesn't mean I came from a bad family we believed in God and we leaned on God when times were tough but we didn't worship or praise him on a daily basis. We prayed when family or friends were ill, or when someone died but we never prayed just to thank him for all her blessings. I have a strong desire to be a faithful christian, I try to be a godly women I know most days I fall short of reaching Gods goal for me but I'am trying and God see's my efforts and God continues to work on me everyday to bring me closer in my walk with him.

This is my 2nd post of the day, can you believe it? I posted earlier that Brinley is a month old today, thanks to my smart friend Jeanne she told me she wouldn't be a month old until April 9th. I swear I'm losing my mind... Yes, she was born on March 9th so April 9th would make her one month old I was just thinking she was born on a Monday morning 4 weeks ago so she's a month old, ANYWAY she's not technical a month old yet.

Brinley weighs 2 pounds 8 ounces, they did another Echo on her heart but we won't know the results until tomorrow or possibly even Wednesday. The doctors still feel like she's doing well and not showing any complications from her PDA her BMP was a little elevated today so he said he wanted to do another Echo just to make sure there wasn't any surprises.. They turned her oxygen down from 25% to 23% which she seemed to be tolerating reasonable well until I held her tonight and it dropped below 85 so they had to turn it up while I was holding her.

I found myself singing "Tis so sweet to trust in Jesus" as I was holding her tonight. I never lost faith in Jesus over the last 4 weeks I knew that he was going to take care of his child. I just prayed that the sweet blessing he gave me would continue to stay with me and her daddy and that her father in heaven wasn't ready to take her home. I know through every challenge we face in life there is a lesson to be learned, I know my faith has gotten stronger because of this challenge. I know Brinley's journey in the NICU is over with yet, but I believe the worst is behind us but regardless if it is or not I know I have my precious savior to lean on when life is difficult.

Trust in the LORD with all thine heart; and lean not unto thine own understanding. Proverbs 3:5

Brinley is 1 month old today

Happy Birthday Brinley!! Brinley is already a month old, I know we've been stuck in this hospital and some days seem like an eternity but I just can't believe she's already 1 month old the time has just flown by.

Yesterday when Brian and I came back to the hospital a good friend of mine Jamie had been by and left Brinley the sweetest little TuTu you've every seen

she had her sister Mila make it and I just love it.. Jamie told me that she makes them and sells them to boutique's and during craft fairs, I wish I knew her email address so I could post a link and you could get one for your little girl. If I find out what it is I'll post it. Anyway I just love gifts and I can't wait to put Brinley in her little TuTu.

Brinley weighs 2 pounds 6 ounces today, Dr.Linn said her lab work (BMP) was higher today so he wants to redo the Echo on her heart just to take a look at it. He said if it still looks the same he won't recommend surgery because right now she's not having any complications from her PDA, so please keep Brinley in your prayers I don't want her to have to have heart surgery but I would rather her have the surgery if it's going to cause problems for her respiratory system. Please just pray that her PDA will close on it's own so she won't have to have surgery.

Brinley's Video Debut

Friday when Brinley's nurse Dinah was changing out her nasal cannula and feeding tube I got to shoot a short video of her without anything on her face.

As you can see she SMILED at me.. She is such a little doll, this is the first time she's had a bow in her hair. The nurses told me earlier I could put a bow in her hair if I wanted to but I've resisted simply because I figured she had enough wires and other stuff to mess with without having to worry about keeping a bow in her hair. Brinley now weighs 2 pound 6 ounces and is up to 8cc of breast milk every 3 hours she is tolerating her feeds well, but one thing she isn't tolerating is her feeding tube. She has pulled it out numerous times over the weekend, eventually they plan to move her feeding tube out of her mouth and into her nose but she'll have to be off the oxygen before they can do that. Brinley had her 2nd blood transfusion yesterday, this time they were able to start her IV in her hand instead of her head so that made the process a little more bearable, thanks to the transfusion her color was very good today and her breathing seemed to be much more stable today then it has been over the last few days.

Today Brian and I went home and painted Brinley's room, it turned out so PERFECT. The color is from Benjamin Moore it's called "Blushing Bride" I'll post pictures once we get all the trim work touched up, Brian's going to work on that this week so we can set the baby bed and changing table up my next weekend. It's been so long ago I almost forgot what the furniture looked like so I had to go look it up to remind myself

We plan on picking this up by Friday, I bought it at The Baby's Room http://www.thebabysroomar.biz/home.nxg and they've been holding it for me since we ordered it back in January. We didn't get all the pieces we only got the changing table and the crib, I would've loved to have gotten the Armoire also but the room is on the small size and we couldn't fit that and a rocking chair so I had to choose between the two and I decided to go with the Rocker.

I was just thinking earlier how lucky we are that we have such a wonderful NICU in NW Arkansas, we are so thankful that we are able to stay close to home and have our friends and family near. We have been so impressed with Dr.Wagle, Dr.Linn, and all the wonderful nurses who take care of Brinley they are very much on top of the latest and greatest medical technology.