We Are Walking in Honor of Briella. Please Help Us Meet Our Goal.

Wednesday, December 26, 2012

Day 83

I had been eagerly awaiting the holidays. I got to see so many families discharged from the NICU right in time to be home for Christmas and I wasn't sad as I thought I would be as Christmas got closer. I was happy for all of them. I knew our time would come and it's just not that time yet. My cousin Alexa was able to bring both her girls home last week! And another January Due Date mom from "What to Expect" that was in the same NICU with us, got to take her babies home also! Christmas Eve I did just fine. I got to see family from out of town and had a great meal. Christmas Day was unexpectedly hard. I had been excited to go eat Christmas dinner at the hospital that night. We had just finished lunch at my parents house when I realized my (soon to be) sis in law had a cold. Now I know that the majority of you will think I'm crazy, but I just got so scared. I hid in a closet and cried. I am terrified of bringing a single germ to the hospital and getting her sick and not being able to bring Briella home. I am very lucky to have a husband that gets it. He just let me cry. Part of the crying was because I had forgotten to ask if everyone was healthy before we came to a family gathering. I felt like a horrible mother not remembering that we aren't supposed to be around large groups of people. And the other part was realizing that this is our family's life now. Being in isolation. Scared to hurt anyone's feelings. Scared that family would be mad at us. But terrified for our daughter. I came home and had to sleep off the anxiety. When we got to the hospital Christmas night, I held and rocked Briella while we listened to Christmas music. I felt relief.... and reminded I am happy to be in isolation if I get to hug this little girl everyday.

Briella has required oxygen 3 times since Christmas morning. Each time is during a feeding. Her heart rate will drop and she will forget to breath, or get choked up. We believe its due to reflux. The staff is going to evaluate her until Friday and possibly decide to put her back on oxygen just during the feedings. Today while I was holding her for her noon feeding, I saw her choke on reflux, then I could tell she wasn't breathing. Stimulation (kind of like tickling an rubbing) wasn't working so the nurse took her from me and laid her down in her crib. They unzipped her purple sleeper to watch her chest so we could see her breathe. The nurse joked that she was trying to match her outfit. It took a minute or so on the oxygen before she finally came back up. The first 30 seconds or so on it her oxygen levels were getting worse. I thought, okay I'm going to have to watch them get the crash cart and save her. There isn't much harder than to watch your child, or feel your child not breathe. To watch her change colors is gut wrenching. No amount of time in the Nicu will make it ok to watch. I am immune to the heel pricks and blood drops. I'm immune to the alarms. I don't get worried when she loses weight or if she doesn't take her bottle. There are so many things that have become our normal life after 3 months in the hospital, but I will scream on the inside every time I see her turn colors. I will be so happy when my daily vocabulary doesn't include me saying "Briella, don't forget to take deep breaths" or "Come on, breathe Briella!"

Miss Briella is 5 pounds 9.4 ounces. Such a big little lady. 16" long.

Please pray that Briella's reflux goes away and she is able to breathe normal. Pray that she gets the hang of bottle feeding. That her eyes and herself stay infection free. And that she can come home healthy an happy.

We had a a photo shoot done a week ago and kept it a secret for Christmas presents. It was so hard not to share with all of you! I will post a couple photos with each post :) Jessica Strom Photography does complimentary photo sessions for anyone in the NICU. I am so glad she was able to capture our life as it is.

Sunday, December 23, 2012

Bath Time!

We have had SO many positive changes this month! We were able to start wearing clothes, We moved out of the isolette and into a crib, we hit 4 AND 5 pounds and we were able to take off oxygen!! I am so thankful! I get into a routine and am forgetful that she is in a hospital and still fragile. Yesterday she required oxygen during and right after a feed to bring her numbers back up. To me, 5 pounds sounds humongous and I get all excited thinking she is going home soon. I forget that she isn't even 16" long yet. That she still holds her breath and forgets to breath. All of her wrinkles from being a "newborn" are gone. She is strong. She can move her head side to side looking around. She can do a sort of push up. She wiggles around in her crib. But she still shouldn't be born for 5 more weeks. Over a month of developing in the womb still. So even though I look at her and see an (almost) 3 month old baby, I have to remember how young she really is. I know she will get all of this breathing and bottles down one day and never look back.

The doctor came in and said that is it outrageous that Briella is doing as well as she is being that she is a "23 Weeker". It is great to hear the reminder from a doctor. I get so used to Briella exceeding expectations that I forget what should be her normal.

Today I am very proud of Briella. They raised her feedings to 48mls. She took all of it in a bottle for me at 3! And at noon she was wide awake and exchanging silly faces with Dad for about half an hour.

Now that Briella is in a crib she can have baths and not just a sponge bath!! Last night was my first bath with her. It was her 3rd. We weighed her on the scale, she was squirming around naked. I was supposed to pick her up then the nurse would set the bathtub down on the scale and I was to place her in the tub. Well as soon as I picked her up she turned bright red and held her breath. I said loud "there's something wrong with her!!" And the nurse said yes, she's angry! Ha! She got so mad she made little fists and then screamed! Then I put her in the water and she was ok for a split second when she felt the warm water. And then the crying started. The nurse scrubbed her clean while I tried to calm her. I didn't know how great it would feel to just simply bathe my child. But after 11 weeks, I was able to smell the great scent of my clean baby. Snuggle with her after she got into her pajamas. And smile at her fluffy hair. Ahhh. I slept well.

We now have a Facebook page for Briella's Journey! There we will post daily smaller updates that wouldn't be big enough for a whole blog update :) And daily pictures.

Wednesday, December 19, 2012

We have a 5 Pounder !!!

I cannot believe that my teeny micropreemie has gained another pound in 9 DAYS!!!! She is now my big 5 pound 2 ounce baby!!!!!!!! I am astonished at her progress. I am going to take home a 6lb baby I bet!! Briella is fed around the clock, every 3 hrs whether she is awake or not. They just hook her feeding tube up to a pump that pumps the milk at a consistent pace over 45 minutes. She is still allowed to try a bottle twice a day. Today's bottle was scary for Mom. As soon as Briella started to eat, her heart rate dropped to the 50s (a Brady.) I was stimulating her & couldn't get her to come back up. A nurse had to come in to help us. She also has been doing her periodic breathing. That's where she will go breath, breath, breath paaauuuussseee breathbreathbreath. It is very intense to watch. I will never become immune to it as I have other alarms.

Yesterday we were unable to come visit the little princess. Big sister has strep throat again. All 3 of us are on a round of antibiotics so we won't get Miss Brie sick. So we stayed away for a day. Today, when I was one stoplight away from the hospital I started getting all excited and jittery. I felt like I was getting off a plane to see someone I hadn't seen in a long time. The elevator was taking so long. The scrub in process took forever. The almost run to her room was too long. I went over to her crib and told her mommy is here, like I always do when I first arrive for the day. Of course I start crying because I'm sure she just looks so much bigger than the last time I saw her. She opened her eyes and fussed until I was able to pick her up. It made me feel like she actually missed me.

I am a little uneasy about the snow we are supposed to get tonight. Aubrey has already said she's scared of the "snow storm" and wants to sleep with us. So I know I need to be home. But I don't want to be snowed in and not make it to the hospital tomorrow. I also want to be here for Briella's first snow!! I will be happy when both my babies are in the same place!

While I am REALLY excited about Briella being 5lbs, I am worried that she isn't getting taller. She is still 15 & 3/4ths inches long. Aubrey at birth was 6lbs 10oz & 19.5" long. Briella's head is growing normal though.
I remember a girl I went to school with who was very short and petite. I believe she had hearing aids. I remember someone telling me she was so little because she was born very early. I just want to go back in time and hug her. I wish we would've been friends.

Also, I know that there are a lot of people wanting to see Briella. She is isolated right now and will be when she comes home also. At the very minimum until flu/rsv season is over. We kindly ask that we have no surprise visits at the hospital or at home. Remember she is in ICU. To see her once things start to relax you will need a flu shot and a tdap shot this year. The tdap is very important as well because it prevents her from getting Whooping Cough, which is on the rise here in Kansas City. We can carry germs without knowing it or necessarily feeling sick. Remember any little thing for Briella could be fatal as she has no immune system. So yes, we will side with over caution. So for now please enjoy the pictures we share on here. Or if you'd like I can schedule a Skype or FaceTime session for you to see her :)

Please pray that Briella's breathing becomes consistent and normal. Pray that she stays infection free & continues to grow healthy.

Below there is a picture of her French Poodle that is good for her eyes to focus on. She loves spending time staring at all the swirls, dots and color contrasts.

Saturday, December 15, 2012

Look Ma, No Oxygen!

So another 1st today. This morning Miss Briella was taken off oxygen! She hasn't had any spells either!! The only thing left is her feeding tube. That will stay in until she masters the bottle. The 1st bottle today she drank all but 12 Mls. The PM bottle she drank about half. She is now at 42 mls every 3 hours. We now have to make each bottle with half formula since she has out drank my home stash of milk.

The nurse practitioner makes daily rounds to each baby. Tonight she came in at 6pm. She said it is so great that Briella is now her last baby that she sees. Before, Briella was one of the firsts seen in the morning because she was so frail.

Tonight was a big night for Briella socially. She got all prettied up, put her big bow on. We opened the curtains between Briella and her neighbor. I might have referred to him before as her boyfriend. He was born about the same time and was also a micropreemie. Both me and his mommy held the kids up to the window that separates their room and let them see each other. Briella was smiling and blowing kisses. Okay she had her hand on her mouth but it looked like blowing kisses. Her boyfriend slept through it, but we have the pics to prove the first date :) What a fun night we had! And to top it off we have had our most favorite nurse back the last two days!

Can you see that the oxygen tubes our gone?!

Friday, December 14, 2012

The First Bottle!!

Yesterday was hard. It's no fun to watch your kiddo hold her breath and turn colors. She just was too worn out to remember to breath, from her vaccines the day before. The blood work they did at 3 had to be redone at 5 due to by the time it arrived to the lab, her blood was clotted. So they took more blood out of her teeny body. One test showed normal and a second showed elevated numbers meaning her body was fighting something. They repeated the test this morning and her numbers were the same. Which is good. They didn't want to see the numbers go up. So we are chalking it up to her body fighting the vaccines and being worn out. Today she hasn't had any spells and is getting on her way back to greatness.

I finally wore down the nurses asking everyday to bottle feed! The dr agreed to let us try and I pushed for today. They said she could try for 30 minutes. She usually gets her feeding over an hr. Well guess what? Lil Miss Briella finished 36s of her 39 mls in the time frame!!! She was able to suck, swallow and breath at the same time!! She had 2 big burps too! We are so incredibly proud and expected nothing less of our little over achiever. This is the last mountain (hopefully) we have to climb before coming home!! They will feed her by bottle once in the morning and once at night so that she isn't getting too worn out. Then tube feed in between.

Please pray that Brie continues to stay infection free. That she tolerates bottle feeding and does not aspirate.

Thursday, December 13, 2012

Vaccination Day

Yesterday Briella had her vaccinations. They gave her 3 shots. 1 of the shots was the 3 in 1 combo shot. I requested that she be given sugar water before. It gives her a rush of endorphins. Afterwards, she was very worn out from screaming and tired from the Tylenol. Her temp stayed a little too warm through the night and she was checked every half hour.

When we arrived to the hospital this morning, we learned that she has been having a hard day. Briella is having a lot of spells and periodic breathing consistently. On top of already having spells, she is getting ready to have her eye exam. They stick metal prongs under her eye lids, so eye day is never a good one.

On a good note Brian and I completed our CPR class this morning. Another step closer to going home.

Briella did gain weight last night. She is now 2023 grams and 4 pounds 7 ounces!!

Please pray that Briella is strengthened and is able to tolerate the eye exam and vaccines. Also pray that her breathing returns to normal an she gets back on the right track soon.

Update 1pm: it looks as most of her spells are during and after feedings. So she has 2 hours of spells, then 1 hour of rest. Her eye exam went as expected. Dr sai her eyes are still maturing. They are more mature than they were 3 weeks ago. Santa stopped by again to try and make her smile. He gave her her 1st candy cane.

Tuesday, December 11, 2012

Day 70

Today marks 70 days since little Briella came into this world fighting. Tonight I saw one of the nurses who rushed down to save her when she was born. I hadn't seen her since. I thanked her over and over and it was emotional. She said she calls Brie her rock star.

Our rock star is 4 pounds 5 ounces! She is filling out all of her preemie clothes quite nicely! And she has a ton of preemie clothes thanks to 2 generous women who do not even know me. I believe both are actually nurses! So if you're reading, thank you!!

I was also sent a big bow headband for Briella. It is so stinkin cute. It is so big on her right now, but she will grow into it. I will post a picture of her in it below.

It is SO nice to have Briella in a crib! I have been having more stressful mornings still dealing with insurance and bills and to be able to just walk in and pick her up when I want to is a blessing. It makes everything thats wrong in the world disappear! How can I not smile and be happy when looking at her?! It took us 10 weeks to be able to hold when we want but hey, we're there now. Today I held her for so long! I held her after breakfast until lunch. Went and ate in the parent room then came back to hold some more. Held until I had to leave to get Aubrey. The came back tonight to hold some more. I knew my mom was going out to see Briella tonight so I surprised her. When she got there I said "Surprise! You can hold her!" Now that she is in a crib the Grandma's will be able to hold every now and again.

Briella is now eating 39ml every 3 hours. And they are down to fortifying it with only 24 calories extra now.

Please pray that Briella stays infection free. That her lungs grow strong and mature. And that she grows up healthy and happy.

Saturday, December 8, 2012

A BIG Surprise for us!

We came to the hospital this morning with my Grandmother, Briella's great-Grandmother. When we checked in Santa & Mrs Claus were leaving, so we asked if they could make a special trip to see Briella. I escorted them to Briella's room. When I walk in I just start balling. She is in a CRIB!!!!!!!!!!!!!!!!!!!!! It took me a good half an hour to get under control. I'm sure I scared Santa. We did get family pics with Mr and Mrs Claus but I will not be posting them as I am crying hehe. She has done well keeping her temperature regulated!!
We are so proud!

Thursday, December 6, 2012

A Blah Day

Today has been a tough emotional day for me. I have been dealing with insurance and its been a nightmare. They have new paperwork they want me to provide everyday. I have been working on this since November 9th and have been denied twice. I'm hoping tomorrow will bring a better answer.

When I got to the hospital today, I was asked to sign consent for Briella's 2 month vaccines. These vaccines are supposed to be given at 2 months of a full term baby. It scares me because she is still so small. She shouldn't be getting these shots until the end of March. She needs 3 different shots, but due to a vaccination shortage, 1 of the shots, a combo shot, they are out of and she will have 5 shots instead. I have requested that they wait until the hospital has another dose of the combo shot. The nurse asked the dr if that was ok and he said they would wait 1 week. I was just really stressed from having to make this decision for her and plus freaking out about finances and insurance. I had a mini meltdown in the parent room at the hospital. Luckily there were a couple of moms there to offer advice. 1 mother that was there had 4 children. 1 was a preemie currently in the NICU, 1 was wheelchair bound, blind and deaf. 1 has severe asthmatic breathing problems & she had lost a 6 year old daughter to cancer. It made me realize that Briella is ok right now so I need to be thankful. Another mom was there with her 3rd preemie baby. The youngest a 26 weeker with relatively no problems. He didn't walk until 2 but he is fine now. It gave me hope.

While holding Briella and after her feeding, she started getting really agitated. She was screaming. I had never heard her act like that. She was on her tummy on my chest, which is her favorite position and aides in digestion. She started making burping noises and then spit up quite a bit and some out of her nose. She then was even more fussy. I moved her to my lap and both Daddy and I were able to see her face and calm her. A little while later I had to put her back into her isolette so I could pump then leave to pick up Aubrey from school. Before I left the nurse changed her diaper and it was so full!!! So we came to the conclusion that she had no room in her tiny belly for her 34 mls and the poo. I was so so relieved that there wasn't something else wrong. I was starting to think she was getting sick.

A bunch of worrying today that got me nowhere except exhausted. I am excited for tomorrow and hopefully a fresh attitude.

Briella is doing well. She is 3 pounds 13 ounces. In my calendar for tomorrow it says that Dec 7 is my guess for Briella being 3 pounds. She has completely exceeded my expectations, not just weight but everything the last 9 weeks! I am a proud mamma.

Please pray that Briella stays healthy.

Monday, December 3, 2012

Day 60

We had such a great shower/celebration for Ms Briella on Saturday!! It was so great to see old and new friends and family come together to support Briella. We took photos of everyone to make an album for Briella so she can see some of the people who prayed for her. We feel so incredibly blessed with the amount of support you all have shown us.

Briella must have known that we were all gathering for her on Saturday because she went the entire day, 24 hours without having a spell!!! That means she kept her oxygen up and didn't drop her heart rate. That is a first for us!!!! And for today, she has only had 1, and that was at 6:30 this morning. Her spells only tend to happen during feedings so it's most likely reflux. But that's great news, another step towards home!! The doctor has said he guessed she has about 6 or 7 more weeks of "work" before she can come home. I hope Briella will pick January 11th to come home. That's my Grandma's birthday.

Briella is now 1617 grams= 3 pounds 9 ounces!! Over 3 and a half pounds. So proud!

Today she was the most alert I have seen here. For an hour she was completely awake. Bright eyes and coo-ing to me. She was having fun pulling out her oxygen to show me she didn't need it and just smile so big. I told her we have everything ready of her to come home and she gave me another great big smile. She has been smiling a lot!! I started to get a little worried because she is supposed to mainly be sleeping so her brain can still develop. When she wouldn't go to sleep, I decided to try and very lightly rock her. We have been told not to as her nervous system isn't developed. But that was a month or so ago so I just wanted to see what happened. I just rocked her and patted her bottom oh so lightly and she loved it. She went right to sleep. It is so amazing to be able to comfort my baby and actually do "Mommy" things. I know I took all of that for granted with Aubrey. It's crazy to think my daughter is 2 months old and it was the first time I rocked her!
I just want to say thank you for everyone who made Saturday special, and thank you to EVERYONE for the prayers.

Please pray that Briella stays infection free.

(In a couple of the below photos you can see where she has pulled her oxygen out of her nose and it is above her nose. He does just fine without it!)

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