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Tuesday, August 31, 2010

Custody battle over????

Im 99.7% sure that our custody battle will be over tomorrow!!! And I think we won!! Little Miss passed her car seat test tonight!!! Mom and Dad had oxygen, sat monitor, and apnea monitor and CPR training tonight. All her tests are done and passed. She is eating well and gaining weight so the nurses cant seem to find a reason the doctor would keep her! Tomorrow will be day 92! At day 100 she gets a party! Sorry guys! I think mom and dad will just have their own party in 8 days! We arent staying a week just for that :) I will let you know when and if our little girl is home and settled. Check back for later updates........................

Monday, August 30, 2010

SOOOOO CLOSE

Sooooo I have some news that I want to share but dont want to jinx us!! But so many of you have been so supportive and on this rollercoaster with us, cried with us, laughed with us, smiled with us, and worried with us! SO I'm just going to spill the beans!!! Brielle MIGHT get to come home Wed/Thurs. That is the doctors goal anyways! She told me today just literally 15 minutes ago I couldnt even wait to get it out! Tomorrow she has an MRI on her head to make sure that nomore cysts popped up. She will be coming home on oxyen and a monitor but we will take her on whatever she needs! She also has to do the carseat test, but Dr Debbie said she kind of has an advantage there because shes coming home on oxygen anyways so if she desats mildly its no big deal! She passed her hearing test yesterday! Her eyes are looking great! Mom and dad need to do the oxygen and monitor and CPR training before she leaves. Other than that we are well on our way to heading out the door and in our home as a family for the first time! Our little 24 week miracle baby is actually coming home! I cant believe it and I wish someone was here to pinch me!!! It has been such a distant dream for the last 3 months and now its becoming a reality! This journey has not been an easy one! But we have such GREAT family and friends, that know who they are, that have made our process just alittle bit easier! This process has brought alot of people closer and our faith stronger! God has sure answered alot of prayers! Ayden has once again done his job and is sending his sister home to mom and dad! She is definately worth this rollercoaster ride and journey! But we are all more than willing for this ride to slow down for a bit! Dr Debbie says dont count it! Brielle always has to have some drama in her exciting life :) Boy aint that the truth!! Like Nurse Terri said, Shes had the full NICU experience! From the Oscillator to vent to CPAP to vapotherm to oxygen tank shes been on every type of breathing machine sometimes more than once! From being a miracle and healthy to getting so sick with pneumonia, not once but twice, we questioned her fate, to coming home 2 weeks before her due date. To facing the PDA surgery to avoiding it! Having laser surgery and doing very well! Having 2 cysts on her brain and we have faith she will too beat those odds! Just to name a few! All in all our miracle is coming home!!!

Saturday, August 28, 2010

Post #100

Well this is officially my 100th post!! HOLY MOLY! What does that say? Its been almost 4 long months of our life that have changed our lives forever. But we could not be happier. We have a beautiful baby girl who amazes us day after day! She is what keeps us going every day after we are sore and tired and exhausted and would love to just throw in the towel. We got news today that her PDA is closed!!! YAY!! No ligation surgery for that! Dr Abe said that we might hear it once in awhile but its just the vessels that we hear. There is some sort of "valley" that babies who have their PDA open for quite a time still have. But all in all...No surgery and it closed is all I really heard! hehe. This morning I fed little chunker a bottle of 44ML and she was still trying to eat me and everything else that came in her path! She was a mad woman! And she even cried, like alot! She turned all red and held her breath until I rubbed her and she let it out. Put the nuc in front of her and she couldnt get it fast enough!! But even with that she wasnt happy! Geez louise I thought! So I talked to her nurse Pam and told her how she acted and she said she would talk to Abe about putting her on that adlib demand schedule and he agreed to it so she took 50ML for Pam at 1:30 feeding and then took 57ML for dad at 4:30 feeding. I thought 44ML would be a struggle to get into her but she just wanted more! Once again, proved us wrong. They also stopped the diaretic that helps take any fluid off her lungs. He doesnt want her going home on that. We dont either. So we will see how she does with that! Hoping her lungs dont get "wet sounding." She has an oxygen tank that now just attaches to her crib or we wheel with her since she is on a much lower liter flow as they had anticipated her to be on already. Shes down to a 1/16th now. She weighs 5lbs 2.5 now. Getting bigger! Had spa day today and her nurse said she is a natural woman! She just layed there and let me wash her hair and soaked it all in, literally!

Friday, August 27, 2010

Gotta Love Set backs

Well little Miss is taking her own approach on things! She didnt like mom and dads goal of going home next week. Dr Abe came to talk to us today and said that we shouldnt plan on her going home next week. :( She has been having more bradys and desats when she is eating. Sally from speech therapy came to feed her today and she desated quite a bit during her feeding. She said she isnt ready yet to go home the way she is eating right now. He did however lower her cannula flow to 1/8 of a liter which is the lowest the one on their wall goes so they were trying to find a new flow sensor thingy or were going to have to hook her up to an oxygen tank that goes lower than 1/8. So I guess at this point were just going to go day by day and try not to look to far ahead. Shes the boss as nurse Kathy would say! Boy does she know her or what!!! This news has my head spinning. In one sense I know its best for her. In another I'm super bummed! We were doing so well and moving at a good pace, and I quit my job, and my baby was coming home!! Everything was PERFECT! Now everythings up in the air! Never know what to think. Dr Abe did say tho that shes proved everyone wrong already so she could just all of the sudden take off and make it home late next week, but not if she continues this way. My emotions are stirring everywhere and I feel like I could just bawl at the drop of a dime! But no time for that! Need to just keep trucking and leave it in gods hands! He hasnt failed us yet and he wont this time!

Thursday, August 26, 2010

Day full of CHECKS off the list!

Well not too much to report today! But I knew lots of people would be checking in for the next update, so I thought I should write something atleast! So lets see......

She had her eyes checked again today and he said they are looking as normal as he would like and healing very well! CHECK!

She ripped her feeding tube out about 1:20am Tuesday so they havent had it put back in since! no feeding tube..CHECK!

She has been taking all of her feedings....CHECK! Today she is starting to poop out tho, so I will be curious to see if they caved and put her tube back in. Chris said last night "Not on my watch" HEHE!

Brielles ride home at hospital....CHECK! Felt so weird to carry a carseat!!!

Got Dr Abe on board to discharge her next week CHECK!

Dr Abe reduced her calories to 22 cal which is what she will go home on CHECK! Now she has to eat 44ML! CHUNKER!

Got a bath tonight CHECK! She was alittle more relaxed this one not as edgy. But you can tell shes getting older and is getting a voice! OH NO! Shes been listening to her noisy neighbors and I told her not too! Guess shes not going to be a good listener :)

She is having a ECHO on her heart tomorrow and another blood gas and Dr abe is going to try to go down on her oxygen liters so he can get her to 100% oxygen soon. He said that monday he wants us to do the monitor training that we will be bringing her home on. We will need to know how to work the oxygen tanks and monitors and what medicine she will need to take and times etc. We need to take CPR yet before we bring her home. So we have quite a few more CHECKS to put on the list but we are getting there! 7 is enough for today! :) She weighed in at 5lbs 1.2oz!

Wednesday, August 25, 2010

Family Room

Today was a GREAT day for mom! Everything was going right in my day and then when I got to the hospital it got even better! I walked into her room and she was gone! I thought maybe she was having a test done to go home or something, but Nurse Kathy put her arm around me and started walking out the room and proceeded to tell me she was in the family room waiting for me!!!!! WHATTTT!!! that means she is on the nasal cannula!! One more step closer to running out that door! Sure enough, there she was! In her crib in the family room! She is still hooked up to oxygen and a monitor but it will be what she comes home on so they put us in the family room to get us used to no nurses and her sounds and basically to feel more comfortable with her. Kathy told me when she came in alittle while later that I havent stopped smiling! You know how long I've been waiting for this day? ALONG TIME! I called my sister to tell her and she said "Now you get to sit on the couch and watch TV with her" I've always said that just those little things that are "normal" I have longed for are now here! So thats what we've been doing! Sitting in the lazy boy snuggling and watching TV. She has been quite content. She hasnt had many desats, and even didnt have one for 2 1/2 hours which is pretty amazing for her! I have to say tho after 4 hours with her alone, I am feeling pretty content! We are going to reserve a family room for this weekend and spend more time one on one with her and really get comfortable with her this weekend since they are talking discharge next week already! We have to wait til Mon or Wed tho cuz thats when Kathys on :) All in all its been a GREAT day that we've been looking forward to for along time! We are getting everything all set for her arrival home! After 3 months in the NICU we will have full custody of her vs. our supervised visits!! :P

OOOOOOOOO AND! News just coming in from our little private family room.........

BRIELLE IS 5 pounds!!!!!!!!!!!!!!!!!!!!!!! 5lbs .4oz to be exact!!!!! HOLY MOLY!! This is too much good news in one day!!!!!!!!!!!!!!!!! Hope it keeps coming our way!!! We need it!!

Monday, August 23, 2010

Reality is hitting hard!

Well not too much to report! Just recovering very well and back to the bottle feeds!! Her eyes are looking much better! Alittle swollen yet but not too bad! She nippled 29ML for me at 7:30 and got fed by tube at 10:30 then took her whole bottle of 36ML at 1:30 feeding and took the whole thing again at 4:30 for dad!! Brielle got to go in her first swing today! She liked it alot! Guess that means we need to buy her a swing now! She had spa day today but was not a happy camper! Not sure what the deal was! She always loves spa day! The water was alittle cooler maybe she likes a hot bath like her mama! I think she was starvin too! She can barely make it to the 3 hour mark to feed! She will be happy when they put her on whats called an adlib demand schedule where she wakes and eats when she wants. She is back down to the 4 liters on her vapotherm. She was at 2 liters when she had the surgery. So we are getting there and almost back to where she was before her surgery! Doctors are talking about releasing her around labor day week. It is sinking in with Josh and I. We have always felt like we arent parents or we are parents with "supervised visits." We didnt get to experience the full pregnancy of them kicking or getting extremely huge to wear maternity, etc. Nothing was normal about this experience as I've said before so we are kind of doing it backwards it sems. After going back to work after having her I today turned in my 2 weeks notice of stepping down. And then we will be bringing home baby. It was bittersweet handing that letter in today. I am sad to leave the people not the job. Over the 7 years I have made some great friends thru the years. I just know where my heart is and Brielle needs me more than anything! We fought extremely hard for her and in return she fought even harder! She is our miracle and she will never forget that. Since yesterday when it has finally sunk in that she IS ours and she WILL be coming home in the next 2 weeks we have some closure coming our way. She will be solely ours. We have been waiting 83 days for that day to come! We are racing to the finish line full force! Hopefully we have no more bumps in the road that keep her here any longer! Full speed ahead!!

Sunday, August 22, 2010

On the road to recovery!

Brielle is doing pretty good! Her eyes are still red, puffy, and sore. But we expected that. She was pretty fussy today and had troubles settling so they were giving her tylenol. She had a 4 diaper poop for daddy! That a girl! Get him broke in!! She is still on the 6 liters of vapo so Dr Katie said this week we should be able to get her down and maybe off and on the nasal cannula. Other than that nothing really new to report! Which is always a good thing!

Saturday, August 21, 2010

Eye Surgery- Check

Brielles eye surgery went pretty good! She had to be intubated (breathing tube put back down her throat) almost right away. She stopped breathing and had some heart rate dips and wasnt too happy! So they said after they put the tube in, she was much happier! The procedure ended up taking around 2 hours. We were hoping to have her extubated by 6pm but she was still pretty out of it and sleepy therfore not wanting to breath on her own. So they were leaving her intubated and Lauras goal is to have her extubated by morning. All the alarms and the tube back down, and not seeing her breath very hard, not seeing her awake, not getting to hold her, etc. was bringing back sooo many memories of about a month ago that we werent too keen on! Felt like we took about 20 steps backwards in a matter of hours! Hopefully by morning when we get there she will have taken atleast 10 steps back in the right direction and on her way to coming home in our loving arms where we've been longing for since June! Just another bump in the road. We should be good at all these bumps by now, but I think we were getting to used to the steady road ahead!

Friday, August 20, 2010

Eye Surgery

Well its official! Eye laser surgery tomorrow morning at 10am. I, in a way feel relieved its just being done and will be over but I feel bad for Brielle. All that she has endured over her short 80 day life, she just cant catch a break. BUT I guess if she has to have any surgery, this is the one we'd choose. Less invasive and quick recovery!! Please send all prayers and happy thoughts her way tomorrow! Hoping it provides a GREAT outcome!

Brielle is now up to 4lbs 12.2oz! Little pork chop!! Still doing good on her 2 liters and they are talking about putting her on the nasal cannula and getting her ready to come home since she will come home on O2!! BRING IT ON!

Thursday, August 19, 2010

Center of Attention

Brielle is now down to 2 liters on her vapotherm!!!! She is almost off vapo and on the nasal cannula!! She can come home on nasal cannula not on vapo! So big step!! Then she has to learn how to eat! Yesterday she took 20% of her feeding! Not too bad! Eye appt tomorrow. Other than that not too much to report! Bath day, vapo turned down, drank all but 5ML at 130 for me! Busy day for her! She was wore out tonight when we left! Justin and Lavonne came tonight to see her and her belly was getting full and she had a brady so Angela, her nurse, told Josh to put her on his arm the long way and hold her like that. She LOVED it! and so did all the nurses!!! Nurse Liz from OB hapened to come up and drop off some milk for Bris neighbor so she came to say Hi and then Kristin from RT came and LOVED it so she spread the word and pretty soon there were about 6 nurses all gawking at little miss. It was cute!!!!

Wednesday, August 18, 2010

Another day down!

Well Brielle is now 4lbs 9.2oz! She is still doing the bottle feeding and continuing to do pretty well! She took 8ML at 7:30am and 18ML at 1:30pm and she is working on her 4:30pm feeding right now. Doing pretty good, so Im guessing about all of it. Those are all out of 36ML. Still down to the 3liters of vapotherm setting. Other than that, its been a slow but steady week! Tomorrow probably will be her eye exam again. See how that turns out!

Monday, August 16, 2010

Day 76 down!

Another great day in the land of Brielle! Lets see....where should I start??? Her vapotherm breathing machine was turned down to 3liters!!!!! I heard that 2 was the lowest setting and then they wean her to the nasal cannula!! She can go home on oxygen but not on vapotherm!!! VERY happy to see the 3 on the monitor when I got there at 3pm! She was WIDE awake too and carline said she was awake most of the day!! She is starting to cry and whimper and wine alittle bit more. I think she is taking after her two noisey neighbor boys! NOT a good thing little miss!

Brielle is 4 1/2 pounds!! Feels like yesterday I was just reporting she was 3lbs and now shes almost 5! So hard to believe! I am starting to bring newborn clothes to the hospital since her preemie are getting snug already!

Last but not least! She took 29ML for dad tonight again, out of 37ML! SO the speech therapist, Sally, was there watching her feed and she agreeded that if Brielle was showing signs she wanted to take the bottle, she could have it!! Before it was once every 12 hours, now its when she wants too!! Shes doing so well noone can believe she took to the feedings on her own so quick and so well! We cant either! She is truly amazing and always seems to amaze us each and every day!

Sunday, August 15, 2010

CHOMPED THE WHOLE BOTTLE!!!

BRIELLE ATE HER WHOLE ENTIRE BOTTLE OF 35ML tonight for daddy!! What a big girl!! Tracey her nurse said that she is very impressed!!! To top it off, she had a bath right before which makes her tired to begin with. And then her two patches on the side of her face had to be replaced, and her feeding tube tape, and her one lead on her chest fell off! So she cried for about 5 minutes. That all takes ALOT out of her! So for her to endure all that stuff and still take a bottle is pretty impressive to all!

Brielle is now up to 4lbs 5oz! She is getting too big! Of course she is! The way she chomps that bottle she will come home 10lbs! Now her biggest hurdle to get her home is her oxygen needs. She can come home on oxygen but she cant come home on vapotherm so she needs to get off that! Dr. Debbie said between 3-5 weeks is accurate. Its so close we can taste it!!
We are exhausted from running this marathon and we can see the finish line but just cant get there yet!

Saturday, August 14, 2010

Almost taking a full bottle!!

Brielle is doing soooooo amazing!!! She took 20Ml of 35 the first time she bottle fed. Then that night she only took 7ML. Then this morning she took 20ML and then tonight daddy got her to take 25ML!! Shes not leaving too much in the bottle!!! GO GIRL!! The doctor came in to see Brielle after her bottle feeding this morning and Dr Debbie said that it is amazing that she is getting that much!! She said that with Brielle being 24 weeker and a very sick baby and on all the oxygen shes been on, its surprising that this early she has the suck swallow breath even in play yet. She said that even a baby born at 32 weeks barely has it down at 34 weeks. Brielle will be 35 weeks Sunday!!! Soooo nice to hear news about your baby like that!! And from the Doctor that gets to boot your baby out the door!! :)

She is up to 4lbs 3oz!! We actually had to bring in Newborn clothes today because her preemie clothes barely fit and she gets fussy when shes too tight! who wouldnt!! She also had to be moved up to the newborn swaddle sack because preemie was scrunching her tootsies. Shes doing very well in her crib!!! Very proud of your litte miracle! Me and Daddy got her room all painted and put back together! wasnt going to paint it since we have all the time in the worls ;P But mama got a bug up her you know where and just decided to do it!! Im pleased we did even tho we can barely keep our eyes open right now! I will post pics when it is done completely!

Friday, August 13, 2010

BIG DAY!

Brielle had another Big Day!!!! First was her AMAZING first bottle feed. She took 20ML of her 35ML!!!!! The Speech therapist had to come do her first feeding with us and she said that she had never seen a baby suck like Brielle was!! She wouldnt stop, she had to make her take a break! She said she was "Amazed" at her! Mom and dad are so proud of her!! We werent going to give her another bottle til 7:30 but she had her Spa day again today so she was wide awake and Tracey thought we should just give it a shot! If she did bad we would stop! She only took 7ML that time, but she was tired from her bath and we didnt want to push her too much! Also I dont think I know all the tricks yet to get it in her like Sally knows! All in all I think she did very well for her first time getting the bottle!!!

She had spa day! Grandma Kris and great grandma Kathy came to watch!! She was sooo awake! My mom held her after and just talked to her and she just looked right up at her and focused on what she was saying. It was adorable!

Brielle weighs alittle bit more today, 4lbs 1.8oz. Not a huge jump, but we will take it! She is almost grown out of her preemie clothes so I will have to get out the newborn and bring some up here! The nurse said to not worry about newborn clothes cuz she will jump to the 3mo!! Go Brielle!!!

Thursday, August 12, 2010

From head to toe, watch me grow!

From Head to Toe, Watch me Grow I'm 4lbs 1.5oz today!!!!! Clever Nurse Terri came up with that!! :) Brielle was also moved to a big girl crib today!!! It is alittle bigger than her isolette was but still smaller than the normal crib, but it has the slats etc. She has to be swaddled so she can keep her temp. So far so good! She doesnt like the process tho of putting on the onezie, jammas, and being swaddled! But she will get used to it!

At 7:30 Friday morning speech therapy is coming to give Brielle her first BOTTLE!!!! So we will be there while she trys to feed and see what she does with it!!

Mom and Dad are on cloud 9 right now!!!

Wednesday, August 11, 2010

4 liters!!!

Well....Came to her 1:30 feeding today and Miss Kathy had a nice surprise for mama!! They turned her Vapotherm settings down to 4 liters!! Which means if she stays and does well and stops being sassy, she can start bottle feeding next week! She was alittle up in her oxygen % but she is working harder! We managed to get her down to about 34% and then she was sassy and had bradys and had to be turned back up. Stinker! So we will see if dad can work his magic tonight :) Eye appointment tomorrow to see if she is the same, worse, or better. Asked Dr. Debbie when she would put Brielle in a crib and her exact words were "When she gets fatter" lol she has to be about 4.5lbs she said. OKAY OKAY I guess we will wait it out!!! I cant wait but we can wait ya know? It will be exciting to see her in something other than a plastic box! Like a real baby crib! For 10 weeks we have seen other babys in cribs and going home etc and being bottle fed, and we are SO ready for it to be Brielles turn! Let the milestones keep coming!!!

Well I am editing this post since I got to the hospital and got new news:

We just got the news that she doesnt have to have the surgery this week. Her eyes have progressed from last week but not as rapidly. He said it wouldnt surprise him if in the next 1-3 weeks she would have to have it but as we said before, he has been wrong and he hopes he is wrong again!

Laura also changed her feeding tube (OG-oral) to a NG (nasal) So now her feeding tube is down her nose instead of down her mouth. We will see how she likes that better!

And last but not least her weight!!...........READY for it............How bout now?............Drum roll please...........suspense music.......okay okay here it is........3lbs 15.7oz. Little stinker!! So tomorrow she SHOULD gain that .3oz and hit 4lbs!! Far from her 1 lbs 6.6 oz at birth! Getting to be a big girl!! Brielle just does not want to be a big girl and get to 4 pounds!! Geez louise!!

Monday, August 9, 2010

34 weeks

Brielle is 34 2/7 weeks old! So she needs to start doing big girl stuff!! Like breathing on her own, and nippling, and no more As & Bs and no more desats. She weighs 3lbs 13.6oz! So close to 4lbs! Shes really starting to put on the weight now!! Came in today to Laura and Terri talking about Brielle going in a crib. A Crib is a good thing! BUT Brielle does NOT like noise, she has to work alittle harder to maintain her temp, the bright lights will be on her since there is no blanket to cover her up anymore, and she will have to be swaddled. And this little girl does NOT like to be contained!! So it will be interesting to see how she does. They lowered her vapo therm today to 5 liters!!!! And she is at 28% even after lowered!! She was always in the high 40%s when she was on 6 liters so hopefully this is a good thing that will stay and keep going down!!! Well little girl is getting antsy to go back in her pod!!

Sunday, August 8, 2010

Weekend of Showers complete :)

Brielle had her second shower today at grandma Cindys house for daddys family. It was very nice!! We have sooo much stuff for Bri when she gets home :) We put some of it away but we still have quite a ways to go!! there is soooo much!! We got her crib all put together so now we just need the baby that goes with it :) Brielle got her first camo today! It is a pair of bibs! It is sooooooo cute!! daddy was all smiles!!! Its a joke at the hospital that she needs to come home in camo since her due date is technically opening weekend of bow hunting! Its coming quick!!

I forgot to add yesterday, We had lots of balloons at my familys shower and we didnt know what to do with them, so we each took on and released them up to Ayden on Anthonys "Here you go Ayden" command. It was cute! Brought tears to Josh and my eyes.

Brielles lung Xray today showed she is still mildly collapsed and not getting any better, but not any worse. Dr Abe was talking about switching her diaretics to see if he could get some of the fluid off her lungs and get her weaned off her vent settings. We dont want to rush her because that could send her backwards. Its soooo tough because we want her to be that 5 steps ahead of where she is. But like every nurse says to us, she shouldnt be here yet. So its okay where she is. We shouldnt have her right now. So she is doing very well considering her circumstances. She is having to fight for the place she is at right now instead of me pulling all the weight for her. So we have to keep telling ourselves that as well. It is hard!! We see her, she is here! Doing pretty good! Of course we want her to be home already. Who wouldnt? But September is just around the corner. We made is 68 days already we can make it another 42 days til her due date. And maybe she will surprise us and make it home before that :)

Saturday, August 7, 2010

Baby Shower #1

Brielles first baby shower with my family was this afternoon! Brielle is one spoiled girl!! She has sooo much love and support we are so thankful for!!! It was pretty cute, when we got up there after her shower, I was telling her a bunch of stuff that she got! I said "you got a camo blanket with PINK" and she smiled and smushed her face! It was soo cute! Like she knew what I was saying and reacting in a way like she liked it!! We have Joshs family tomorrow! Her room is filling up!! My dad said we might need 2 rooms to put all her stuff in :)

Brielle is still at 3lbs 10 oz. But thats okay! She had a blow out poop last night for Terri! So she stayed about the same! Nurse Terri put a cute little bow in her hair last night! Josh went to the hospital before me this morning and sent me a picture to my email of her with the bow in her hair! It was pretty cute! nice email to wake up too! When she is about 4 1/2 pounds they will be transfering her to a crib since she is in the lowest settings possible on her isolette. I asked Terri if we could bring her mobile in and she said absolutely!! I think it will bring a sense of "home" with her when she comes home even. Thanks for the idea Sara!!! We got Brielles carseat today too from my mom, dad, dads gf Mary, stepdad Rob, Grandma Kathy, my sister Emily, and brother in law Mike! They also bought her mobile. Now I cant wait til I get to hear the words I hear the nurses tell so many other families, "You can bring in the carseat any day now!!"

Thursday, August 5, 2010

2nd ROP appt.

Brielle had her second eye screening for ROP (retinopothy of prematurity). She is now at Zone 1 stage 2. When they get to stage 3 she will have the laser surgery. There is no knowing when or if that could be. Next Thursdayish when she has her 7-10 day followup appt they will either stay where they are now, get worse, or correct themselves. Both Drs said that it doesnt surprise them that she has some sort of ROP. With her being 24 weeks 2 days when she was born and then being on the amount of oxygen she is on, its not shocking. So only time will tell what she does! I found this webpage that explained the condition pretty well I thought if you'd like more info. Its difficult to explain!

http://www.rcophth.ac.uk/docs/publications/paed-patient-information/ROPLeaflet.pdf

Our little Angel is now 3lbs 9 oz! Not bad! she has gained 9oz in a week! She will be 4lbs before we even know it!! Mommy hasnt been doing her job and was behind on laundry, so she was put into a newborn outfit I had up there that was long but skinny enough to fit her! She didnt look to small in it! Hard to believe that she can almost fit in her preemie clothes already! They are poking her little heels tomorrow moring to check a blood gas and see what her CO2 level is at to see if they can wean her settings on her vapo therm at all. Lets hope we can!! The lower those settings are, the closer to bottle feedings, and closer to coming home!

Wednesday, August 4, 2010

Truly Blessed!

Brielle is now 3lbs 8 oz. She is getting to be so big!! Everyone laughs at me when I say that! But really when she was born at 1lbs 6oz and is now over double that weight in 2 months, that is big to us!!! To most, a 5lbs baby is small and an 8lbs baby is big!! We are the opposite! lol we think a 1 lbs baby is small and a 3 lbs baby is big! hehe. Grandma Kris and Grandpa Rob and uncle troy came up tonight. Troy held her for the first time! And this is the first time Gpa Rob seen her and got to hold her! It was so sweet! Never seems to get old when someone is so taken back by our little miracle! She truly is! And a million dollar miracle by the time she gets home! We have been so blessed to have so many people support and love us thru this process! Many of the people we know and are dear to our hearts! Others we havent even met and they are such great people and pray for our family every day! Talking to a very good friend today, Kelly, and she said, isnt it amazing how many people read your blog daily and are so interested in your life? And it got me thinking! YES! I am truly amazed how much this whole experience has changed our lives! We have made some great new friends thru this process, and also learned alot about who your true family and friends are and arent. We can not express how much it all means to Josh and I. Brielle too will one day know how much love and support she has gotten as well! My mom is printing the blogs for her and making a book that we can have her read when she gets older. I think she will love it! All the love is helping her get so much stronger to make her come home that much faster! She is over 2 months now and every week she is changing into a beautiful little baby! She is more awake then she has ever been. She is learning that she has an opinion and expresses it! She knows when it is time to eat and she will fuss until she feels her belly getting fed! Her nuc is her best friend! She grabs onto mom and dads fingers o so tightly as she always has! She looks right up at you when you talk to her! She recognizes voices and she smiles and looks for you. She lifts her head off of the blanket as if she was older than she is! She loves spa day! She kicks her feet about and waves her arms in the water. Dad gives her a good scub down! She has a certain way she loves to cuddle! Laying up on our chest with her body horizontal and her head tilted backwards so she looks up at us! Overall we are pretty pleased with everything she is doing thus far! Everything that we have went thru is so worth it when you get to hold and see your little baby girl staring up at you smiling so big!

Tuesday, August 3, 2010

Grow bigger!

Well not much too report. Just growing and getting bigger so she can do big girl things!! We cant wait til they start to introduce the bottle to her. Today the Dr. told me that her lungs are still looking not the best. She has to keep growing lung tissue and he thinks that why she is having problems getting down on her settings on Vapo. The way she went from the vent to the CPAP to the vapo in a few days I thought she would be down on her vapo by now. They were thinking about turing her down on Friday but then her gases went back up. I guess she just isnt ready! But she was 3 lbs 5.6 oz last night so she is growing pretty good! 5 oz in 3 days wasnt bad!!

Sunday, August 1, 2010

2 Months Old

BRIELLE IS 2 MONTHS!! And 33 weeks gestation. I cant believe we have been in the NICU for 61 days! Brielle has sure overcame alot of obsticals that we are all so proud of her for! She has pneumonia that made her one sick baby! The first time I ever thought she might not pull thru. But after an emotional week she fought thru it! Facing possible PDA surgery. But it is closing slowly. Collapsed lungs and fluid on her lungs kept her on the vent longer than anticipated and another spell of penumonia. But now she is 3lbs and on the Vapotherm and doing awesome! Mommy and daddy get to give her baths by theirselves now and we take her in and out alone! It is great to have the independence. We are starting to feel more like parents without custody of our child. lol Just kidding!

Brielle got new neighbors. Twins. Boy and girl to make it worse. It doesnt sit very well with me. Some days I dread going. As selfish as that sounds. We are still grieving Ayden and it is hard to walk in the NICU and see the 2 incubators next to each other and say that should be how our room looks. I should have 2 precious babies. I am thankful for the one that I have dont get me wrong! But my perfectly planned pregnancy was by far not perfect! Our want to be parents and our journey as parents has been harder than most. Our little girl makes it so worth it tho! I have an amazing husband that stands by myside, puts me in my place, and helps me understand that my emotions are real and OK to feel that way. He is my rock. And honestly if it wasnt for having such a great, supportive, loving husband I probably would be a mess! Having a very fiesty sassy little girl is definately a plus as well! We will get thru all the tough times. Somedays I dont think its possible, but I am starting to tell myself we've come this far, I will make it thru this one as well!