New cousins

Lots going on this week and its only Wednesday!!! My sister had her baby girl today!! Johanna Marie was born Oct 27 at 11:02am 5lbs 5oz and 18.5" long! My cousin had her baby yesterday at 12:28pm 5lbs 7oz 18" long! Lots of babies this year!! Its my grandma joans 10th great grandchild! She had 3 grand children born in 1984 and 3 greats born in 2010 now!

Nurse Kathy came to visit from the NICU! We had a WONDERFUL visit and I believe Brielle remembered her voice. She just looked up at her when she was talking. It was sweet to see her again!! I dont miss going to the NICU every day three times a day but I DO miss the nurses and friends you meet!! I keep in touch with quite a few of them which is nice!!

I wrote an article for http://www.preemiebabies101.com/ambers-story/ and late last week www.growingyourbaby.com contacted me to write them "a short story" So I completed that Monday and sent it. I'm not sure when exactly it will be posted! I never thought I loved writing until I started this blog! Maybe cuz its just something thats dear to my heart and I dont have to think about it, it just comes to me :)

Cry Fest

Monday Brielle was EXTREMELY fussy and would only sleep very little and cry when she wouldnt sleep. I tried to give her anti gas drops thinking it was gas, tried to help her poo, took her temperature like crazy, checked her ears, everything I could think of and it just wouldnt stop. Wednesday I said enough and called the Dr. even though I knew Dr. kranik was off. They called him finding it odd as well she wouldnt stop crying and he had me come in and see one of the nurse practitioners and gave her some ideas such as baby heartburn. They ruled that out and still couldnt figure out what it was. They thought that maybe she was getting too much caffeine since they just got the download results and it showed that she hasnt had ANY brady or apneas in the last 2 weeks so we were able to stop her caffeine!!!! They sent us home and scheduled us an appt for Thursday morning if she was still fussy. We got home and she settled down in her swing for about an hour wide awake and HAPPY! It was a miracle that didnt last long! She was up ALL night Wednesday night. Josh and I took shifts sleeping and trying to soothe our little girl. Our hearts broke that nothing would work! I couldnt wait for 9am to roll around to get her to Dr. Kranik!! I get there after she cried in the car the whole way there, take her out and she is HAPPY! Talk about calling mom a liar! Dr. Kranik asked some questions and then quickly went to examine her. He listened to her, checked her ears, and then took her diaper down and felt her groin. Immediately she turned bright red and started to scream and cry like she was for the past 4 days. I told him this is how she has been. He asked me if anyone has told me (from the NICU) that she had a hernia in her groin. I said "NO?" He said yes and its fairly large. He stepped out and came back and asked me to take her to Theda Clark right away to see a surgeon. I cancelled my birth to 3 program that was in 30 min and went to Theda Clark. The surgeon was waiting for us. He took her diaper down and said that she had a walnut sized hernia in the right part of her groin. He said he was going to push it back in. I was like WHAT! Can you even do that??????? Dr. Kranik said that they wouldnt do surgery til she was 6 months and off oxygen, and nothing was mentioned about pushing it back in. I didnt know what to expect. I went alone thinking he was just looking at her. WRONG! She screamed and cried for the whole 15 minutes it took to get it back in. She was crying so hard that she pushed it back out on him when he almost had it in. Any type of heavy crying or pushing (constipation) will push it back out. He said to me, I will try one more time and if I cant get it to pop we will need to go straight down to surgery. WHAT? SURGERY? This wasnt the original plan. I guess I shouldnt EVER expect the originial plan with Brielle! She thinks its fun to do things Brielles way! Finally the words I was waiting sweating for, IT POPPED! I asked him again in case I heard him wrong and he said IT POPPED! He held it in place for about 3 minutes until she calmed down. He was very sensitive and was rubbing her leg trying to soothe her with me. He told me she will eventually need surgery but he would like her to be 6 months old (December) and off oxygen atleast 3-4 weeks. It is a 20 minute procedure and she will more than likely come home with us that day unless she shows any baby sat signs. Then she will be admitted just over night to be watched.

So all the pain finally made sense!! If we bumped it, it would hurt, causing her to cry which caused it to pop out which caused even more pain. A baby doesnt understand to be calm and it wont be so bad. Everytime she would try to poo it would pop and hurt again. I felt so bad that I missed such a big lump like that on her groin. But like the Dr. said, she was soooo crabbby when we changed her because it hurt that we were just focused on getting the job done and calming her down. And never in our wildest dreams did I think to look for that!!

Brielle is also down to 1/32 on her oxygen which is the lowest setting so I asked the Dr. whats next. He gave us the OK to take it off thru out the day. BUT she cant sat down below 93. I've tried 3 times today but she didnt last very long. Baby steps! But atleast its a start!!! On our way to a cordless baby!!! In 2 more weeks they will come do another download of her apnea monitor and if she hasnt had any she will be cleared from that monitor!!! YAY!

She has been really watching objects lately! We have a video online that she watches all the time! When shes fussy I will play it and she settles and locks her eyes on it. She watches the ceiling fan. She watched a glow stick I had last night go back to back. Its pretty neat to see her starting to really act like a one month old now!! She weighs 8lbs 9oz!

Priceless moments!!

This last week has been pretty uneventful. Which is always a good thing in the world of a preemie!!! She is slowly getting down on her oxygen!!! SCORE!! She has just graduated down to 1/32 liter! Which is the lowest setting on her oxygen tank!! I was at her new second home today again (Dr. Kraniks office) for a caffeine level check and mentioned that she was on the last setting on her oxygen and the nurse said when we think she is ready to wean OFF to call and set up that appointment. But to be able to do that she should be sating around 99-100 pretty much all day. So right now she is sleeping and she is sating 95. I'm not really sure when it all happened!!!! Last I knew she was at 1/8!!! Dr. Kranik called it!! He said she would start gaining weight and start to suck down her bottles and then wean off the oxygen and apnea monitor and hopefully her caffeine!! Shes been starting to suck down her bottles faster than normal! Wednesday we had to reload her caffeine again. Her levels were too low from the last "load". So now she is up to 1.4ml of caffeine a day! We are going to buy stock in starbucks!!

We went on Sunday to Waupaca to take family pictures!! We did them ourselves with the help of Joshs mom. I think they turned out great!!! I am more than excited!! I will post a few!!! Brielle did a good job!! We were there a few hours and alot of different scenerys and she did awesome!!! We even had the furbabies and they did okay too! Not bad for a last minute idea and throwing it together!!! Priceless moments we will always have now!!

Friday was National baby loss awareness day. So we got 3 balloons for Ayden from me, daddy, and Brielle. We got blue, white and pink for the baby loss pin colors we have. We let them go and they at first went towards one single star in the sky then they turned and went behind us. They went towards 3 stars!!!! The 3 stars to me I instantly thought of Carlos, Collin, and Ayden. All his friends from the NICU that had passed right around the same time as Ayden. They were waiting for their special balloons!! It definately brought a tear to my eye. My dad and Mary and my grandma were with us when we did it. We all just stood there and watched until we couldnt see them anymore in the night sky! Priceless!! We will never forget our little man. Brielle will never forget her hero and her brother As I talk to other parents that have lost a little one they are the same way. One nurse gets her daughter a little xmas tree every year. So we all have our little ways I guess to keep them alive. We got Ayden his own pumpkin. I put wings on it for him. We had it in alot of Brielles pictures! Gone, but never forgotten!

We picked the best pumpkin!

Well not much has changed in the last week! Which is of course always a good thing in our lives! We did have her apnea/brady monitor downloaded Wednesday and she was having too many apnea episodes so the Dr. called us back in on Thursday for a caffeine level check and on Friday decided they needed to reload her on caffeine. So that night at 4pm we had to give her 1.5ml and then 6 hours later another 1.5ml and then daily now she gets 1.1ml. Up from her .9ml she was getting. She SHOULD have outgrown her caffeine being full term now, but she hasnt. Still our goal to get her off of the caffeine but as Brielle has shown us all in her 4 months 1 week 3 days life, is that she does stuff as she darn well pleases! Once again, "Shes the Boss." As scary as that is! That is the truth! So we just sit back and enjoy the ride for now. I can definately tell the difference tho now that she is on the higher caffeine. She is not as buzzy! Her monitors are definately quieter!

This week we go back in tomorrow for another caffeine level to make sure it theraputic. Thursday Birth to 3 is coming to the house. Early intervention and Physical Therapy are coming this time around to evaulate her. They will keep an eye on her over the next few months and make sure she is developing properly with her motor skills etc and also teaching us some excersies to do with her. They will be watching for signs of cerebral palsy as well since her risk of having it is higher.

My almost 4 year old nephew was over this morning early! And he wanted to look out my window and say "Hi" to Ayden. AWE melted my heart!!! We didnt even say anything to bring it up! My sister said he says Hi to Ayden all the time. He roasted marshmallows the other day with him. All stems back from that one night we were having a fire and I seen the one star in the sky and told him it was Ayden. He remembered. He has a memory like I've never seen on a kid!! It just brings tears to my eyes everytime that precious boy brings up my precious baby! He still lives thru us even tho he is gone. Anthony keeps asking if Ayden will come out of the sky. Its hard that he doesnt fully understand, but so special that he doesnt forget his cousin. Sometimes he will ask "Whos Ayden" but then he remembers. And he knows he is in the sky. We released the balloons at Brielles baptism and the clouds formed and X, or if you tip your head, A cross!! The balloons went right for it!!! Oct 15 is Worldwide pregnancy and infant loss day. We will let our balloons go for our little boy. We would light the candles too, but we cant with his sisters oxygen. So we will send our thoughts and love up to you little man!

I am working 5 days this week, due to it being Sweetest Day Saturday, and me being a florist. So my sister came over today and watched Brielle and my mom is coming on Wednesday. I was a nervous nelly but after 2 hours I settled down. I have full trust in my Sister and my mother on Wednesday. My sister spends alot of time with me already and knows her Ps and Qs. She knows the monitors etc. It is nice to get out and put some hours under my belt, but one week will be enough! I will just go back to my Fri Sat Sun! I'm exhausted! And I have 3 more days to go yet, and we havent even gotten to the busiest day!! Living the dream!!! HA!

We took Brielle to The Pumpkin Place on Sunday with Grandma Cindy, Auntie Ema, and Cousin Anthony on Sunday! I posted some pics! Isnt she getting some cheeks on her????? It was fun! I cant wait til next year when she should be able to walk or crawl to her first pumpkin! Daddy got a big pumpkin, mommy a medium, Brielle a small pumpkin, and Ayden got a white pumpkin. We went thru the corn maze and laughed so hard! Thought my sister was going to have her baby in the corn maze!!! It was great fun!! Even pumpkin bowled!! We spent almost all day outside yesterday, doing yard work after the pumpkin picking, and I think Brielle really liked it!! She slept good last night! Which mommy appreciated having to work today! Now tonight she is fighting daddy to go to sleep :P That a girl! (as he would say!)

Shot day

Brielle had her 4 month shots today. Daddy was working so I took her by myself. It was okay until she got her shots. Then she cried and cried and cried. She was NOT happy!!! She did so well in the NICU! Probably because she had her nurse Kathy and her sugar water on her passy. They dont have that in the peds office. Got home and she was still cranky. Finally I got her to sleep by putting her in her swing on a pretty fast swing setting and she zonked off. The nurse kept on hitting her veins while giving her shots so she bled like crazy and they couldnt give the 3 in a row like normal because she had to keep stopping to make it stop bleeding. So we would settle her down and then have to rile her up 2 more times. I think dad might be bringing her in December for her 6 month shots.

The Dr is pleased with her progress. Adjust she is about 2 weeks old. He said for that age she is exceeding his expectations. She was looking up to find me and make sure I was still there and focusing on me. She was grabbing my fingers. And she was very alert. She is in the 25% percentile for weight 5% for height and head circumfrance which he said is good for her adjusted age. We talked about weaning her and as far as the oxygen, thats his last thing hes worried about right now. He is more worried about getting her off her caffeine and getting her heartrate to stay steady (bradys) and her to have no more apneas (stop breathing). So thats his primary goal right now is to resolve those bradys and apneas. If she is still on about the same settings on her oxygen in a month or so then he wants us to talk to a Dr in Milwaukee about what to do. So we will go from there. There was a few days that we got her down to a 1/16 liter but then she tires out. Hes hoping that as she gets more stronger and bigger she will get more stamina and be able to do it herself. He is very pleased with her color and her size. He said she doesnt look so "fragile." She has meat on her bones finally. Shes starting to fill out like a newborn!

4 months old

Today Brielle is 4 months old. Weighing in at 7lbs 6oz. Today I was wondering where the past 5 months ago. 5 months ago is when my water broke. I was admitted to the hospital and our battle to get to this point began. I am proud to say that we won that battle :) I would do it over in a heart beat! It's true that we don't know what we've got until we lose it, but it's also true that we don't know what we've been missing until it arrives. We miss our baby boy more than ever, but with out him we may not have his sister right now. I will be the first to admit that now we are home things have settled and I have alot more time to think. Aydens passing is getting the best of me. I do not quite understand gods plan. I dont understand why he had to take my precious boy away from me. I do not understand why he had to have it happen so soon to have my precious girl go thru the fight of her life. I hope one day I can understand that plan of his and stop questioning. Im sure in time I will. But right now the pain is still there. I see little boys when I'm out and about and I miss him more than ever. I find myself looking at the little boy clothing. The little things that I still catch myself doing and have to say Hes gone let go. Easier said than done. I dont want Brielle to forget her twin brother. Her hero. With that being said Josh and I have started a "tradition" we want to begin and continue with Brielle. We want to release balloons up to Ayden at special events. Like her birthday. This weekend is her baptism and we will do it there as well. Its our way of saying your still here with us in our hearts little man. Josh is getting a tattoo tomorrow of Aydens foot prints and Brielles hand prints. Im pretty excited to see the outcome. He is getting it on his forearm so he will see it all day at work. Thats his memorial to his babies. I wear a cross from my uncle Bruce and Aunt deb everyday. I havent taken it off since Ayden passed. Those little quirks are all we have left. I guess everyone grieves differently. A friend from the NICU that lost her twin son as well was telling me that when she got home from the NICU her grieving her son took on full force. I didnt understand it until now. I completely understand what she means now! Life has settled down, my baby is home where she belongs, I have more time to think and evaluate and it is hitting home! I have one baby, not the two babies that we thought we'd have right now. But its reality and we have to take it as it is.

Brielle is doing very well at home! Monday we have her 4 month shots! She is still on the caffeine. We havent been able to wean her down on any oxygen so she is still at 1/8 of a liter. But one thing I have learned from the NICU is to not rush it. She will do things on her own. And as nurse Kathy always told me "Shes the boss." Aint that the truth!!! She has been staying awake a lot more! The at home nurses are very surprised at her alertness level due to her gestation. There have been 2 days now that she has been awake for almost 7 hours at a time. Taking a few 15 min naps here and there. Amazes me! Her noise levels are slowly increasing. She still doesnt cry very loud. She just grunts more than anything. Pooping is still a major issue with her. We are doing prune and pear juice altering back and forth. Glycerin is her best friend. She loves her boopie. She does okay in her swing. She has learned to roll onto her side. I will put her in the middle of her bassinet and she will roll on her side against the edge of it. I think she likes that barrier. The NICU had a nest like walls around her. Last night she moved all the way to the bottom of her bassinet against the edge. She lifts her head straight off our chest and looks around while holding herself up. She will position herself where she feels more comfortable. She definately is strong!!! But thats what got her to this point!!!