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

Wednesday, October 31, 2012

Prayers Needed Today-Halloween

Today is Briella's first Halloween! She had a rough night & a hard day today so far. She is having a lot of Apnea spells. That is where she stops breathing. It takes my breath away every time her monitor goes to zero. She has only had these happen several times in the month she's been here. Now she's having them several times an hour. They are really cautious with this. They were worried about infection, but her CDC test showed her numbers looked good. They don't think it's a symptom of her heart PDA because they said all of her other respiratory numbers look solid. So they are going to give her a blood transfusion and iv fluids to see if that makes her stronger. If that doesn't, they might do a second transfusion tonight & maybe give her extra caffeine. They have to suspend her feedings, so she won't be gaining weight. When putting the IV in they give her sugar water because they say it helps with pain. It gives her endorphins.
Please pray for Briella's strength. Pray that she overcomes these spells and that we can get back to the steady path of getting bigger with no major hiccups. Continue to pray that her brain bleed goes away & no new ones come, and that her heart PDA closes.

Tuesday, October 30, 2012

Day 26

Yesterday a nurse came in to get us enrolled in our "Homeward Bound" discharge class for the end of November! I was like "are you sure you mean us?!" They are to be done about a month before going home. It is becoming more of a reality every day. I cannot believe how blessed we are.

We received Briella's birth certificate in the mail. I broke down while reading it. When we filled out the birth certificate paperwork the morning after she was born, there was a question-do you want to enroll your child in the national immunization registry? I had remembered a news story I saw a month prior of a mom who's child had been deceased for years an she was still being sent reminders that he was behind on immunizations. http://www.theindychannel.com/news/local-news/indiana-state-department-of-health-apologizes-for-sending-letters-to-deceased-children
I thought how gut wrenching that would be to get that reminder that she was gone. I thought about marking the answer no. But now I am so glad that I picked yes, that she is here, doing well. Glad that I get to hold her and smell her, an even hear her now. God is good.

Little Briella is now 800 grams, or 1lb 12 ounces! She can start wearing clothes around 3lbs, which we gestimate to be around December 6th. I am going to make a guess that she comes home on January 11th, my Grandma's birthday. The nurse says she thinks she will be in newborn size clothing when she comes home. I look at newborn & 0-3 month clothing and can't imagine her fitting into them right now. I can't wait.

Monday, October 29, 2012

A Day to Celebrate

If you are reading this then you are invited. We wanted to be able to Thank each and every reader for their thoughts and prayers and thought we would have a meal, BBQ style, to be able to talk and thank all of you! We contribute Briella's life to all of your prayers! Keep them coming! We don't care if we haven't talked to you in a decade, or if you're a friend of a friend & we've never met, if you've prayed we would love you here! Just be sure to RSVP so that we will have enough food. (Please let me know if this link does not work.) Brian will be smoking meats :)
We are hoping to bring Briella home the 1st of the year!
Looking forward to thanking you in person!

Day 25

Daddy changed his first diaper yesterday!! I am glad they allow us to partake in Briella's care. We can take her temperature, change diapers, clean her mouth, massage her head and hold her for hours!! It seems as though her hair might be getting a little darker. Grandma & Daddy think Briella has blue eyes.

Briella is having some drainage from her eyes that is concerning me. Drs are just massaging her eye a couple times a day in hopes that it is just blocked ducts. She will have her 1st eye exam in about 3 weeks.
She is doing well on CPAP & seems to be having less spells than earlier in the week. Right now there isn't any changes to her care, just letting her get big...ger. Tonight she is up to 770 grams, 1lb 11oz & 13 inches long!!! I am so thankful!

A nurse told me today that babies that do as well as Briella can expect to go home before their due date, around 37 weeks! Which would be right after Christmas/1st of the year. This makes me so excited! I finally heard what I have been needing to hear, they believe she is coming home as much as I do.

Life for me is getting a little more normal. She cries just a little more, when her binkie falls out, or she's too warm, or she has a dirty diaper. She makes these amazing little noises that I love listening to. I love the sound of her sucking on her binkie. Just normal baby stuff. I went way to long without hearing a peep from her!

Please pray that Briella stays infection free, that her PDA closes and her brain bleed goes away.

Wednesday, October 24, 2012

NICU Poem

Two little lines and "we're pregnant is said,
"What to Expect While Expecting" is bought and read.
Everyone's excited and our family is filled with joy and pride,
No one could know that we were in for a very long ride.

She's coming early, way too early, 23 weeks 5 days to be exact
50% chance of blindness, deafness or something not intact.
She's whisked away in a life saving charlot of electronics and gas,
Having no idea if or how long our little angel would last.

1 lb 7 oz's so small she seem unreal,
We're so scared to touch her to see how she feels.
So fragile, so beautiful, so tiny, so wonderfully sweet,
From her hairy body & transparent skin to her minuscule feet.

So it began with oscillators, antibiotics & bilirubin lights,
We'd visit during the day & wait by the phone at nights.
Everyday a new issue, the roller coaster up or down,
News that would bring a smile, tear or a frown.

Then it's graduating to ventilators with leaks & all kinds of settings,
Charts & POC's & the first diaper wettings.
Prayers to hear crying or to see that first poop,
Pumping at 3 am, then calling the NICU for the latest scoop.

Day 20

Sorry for the lack of posts. No news is good news.

Briella is still on CPAP. She does have more spells, specifically more Bradycardia. She forgets to breath sometimes or she breathes really shallow. We try to rub her back to stimulate her to make her remember to breath when we see her numbers going low. I keep getting nurses that are not Briella's nurses peeking in on her saying they can't believe that this little thang is doing so well! Yesterday the respiratory therapist said that every now and then the hospital gets these little spit fires that totally surprises them.

Today the doctor came in to talk to me. He knocked on wood 4 different times while talking about her!! He, like all other staff, is impressed with how she is doing.

Yesterday while holding her, I got to hear her cry for the first time!!!! Now you have to understand that my daughter is 19 days old and I have never heard any noise out of her. So this made Mommy cry and very happy. She only would cry when Her binkie would fall out and she couldn't get it back in her mouth herself. I, selfishly, would leave it out for just a little bit so that I could hear that amazing dainty low cry. Aubrey's voice was so high from day 1, everyone said she sounded like Minnie Mouse. But Briella has a deep voice. It is so precious and I have made a promise to her that I will never get mad or frustrated from her crying.

Brie is hovering around the same weight still. She's around 700 grams. Tonight she is 1lb 9oz. She isn't gaining as fast as we would love her to. But I'm sure all this new breathing on her own has her working harder.

Brian and I are blown away at the amount of kind gestures and personal messages and comments from all of you. You just don't understand how it makes us feel to hear from people who we've never met or that we haven't kept in good contact with over the years. I cannot wrap my head around all the people who actually care about the survival of my daughter. It's such an awesome feeling and I feel that because of all of your positive thoughts and prayers that we will make it through each hurdle. I get my strength from you. A special thank you to the anonymous person from Lenexa who sent us a very nice note. We appreciate it so much and it put a big smile on our faces. Again, just amazed at all the support, thanks.

I would like to ask of you tonight that while you say a prayer for Briella to continue to fight and make positive leaps, that you say a prayer for my cousin. Her and I were pregnant together, our due dates were 3 days apart. Alexa is pregnant with twin girls. She is in the hospital until delivery and at the moment going through what I had to, being on magnesium & worrying that your body will fail you and that her beautiful babies will be born too soon. She is 27 weeks now. Please pray that her contractions are stopped.

Monday, October 22, 2012

Preemie Prayer

Dear God
Thank you for bringing this little blessing into my life. Although I may not always understand your ways, I know you will not give me more than I can handle. Please strengthen my heart as I leave my little ones side each night knowing she's in your hands, and that one day we'll be together so that I can feel like the mother you intended me to be. With every bit of progress that gets my baby closer to home, I thank you for the daily reminders of what's really important and how I've been blessed.

What a Great Monday Surprise!

Saturday Mommy couldn't come see Briella because I wasn't feeling well. Daddy got to visit. Sunday the nurse told us how strong Briella was. Apparently during a diaper change she got herself in the downward facing dog yoga position!
Today, Monday, I lost my keys. I thought Brian had taken them to work but hours later found them under a pile of fabric I was using to reupholster a glider for Briella's room. When I finally got to the hospital, I walked in and immediately heard air escaping loudly from her isolette (incubator.) I threw my stuff down and went to look for the leak. I then freak out thinking I'm in the wrong room because this child does not have a breathing tube down her throat! I look around and see our pictures still on the wall and try to process what's going on. No nurse is around. I look hard at her and it is my child! She has this new device that goes around her head and over her nose now. It's called a CPAP. Briella is off the ventilator!! The only tube she has down her throat now is her small feeding tube. The Dr had came in this morning an said that since everyday they keep weening her vent settings lower and lower, that we need to see how she does breathing on her own!! Her vent is still in the corner of her room in case she needs to be reintabated. Again I was told that babies can sometimes hold their own for a couple days an then have to be put back on the ventilator. They told me when she was born that babies hold their own for a few days then things turn bad. However I have an extreme fighter. I know that she will prevail.
She is the smallest baby in this hospital and I am so proud at how well she is doing. My heart is full of joy. I cried so much when nurse told me she was doing so well that we had to try the CPAP. This is our first (of MANY) step to coming home. I was told about a week ago that once you go off the vent steadily that you're chances of going home are greater. I feel it in my heart. We ARE bringing our daughter home and our family WILL be complete.
Oh and on a side note, our lil teeny baby is up to 1 pound 9 ounces!! 710 grams!! And she is up to 12ml every 3 hours and they are adding 26 calories to every feeding.
Please pray that Briella does well on the CPAP, that her PDA & murmur close and that she stays infection free.

Saturday, October 20, 2012

Day 15

When the doctors put Briella on her Daddy, she lifted her head all the way up off his chest as to try to look at what was happening!! It was so incredible to watch!! They said they have never seen a baby that small lift it up anywhere close to as much as she did. Just more proof that she is a strong strong fighter!
No new changes were made. It was a calm day :) I like calm days.

Thursday, October 18, 2012

Day 14

Today we stumbled upon the meaning of the name Briella. It means God is my strength. How perfect.

We got the results of Briella's brain ultrasound this morning. The doctor said there is half the blood that was there last week. Great news!! He is still really concerned about her heart. The PDA does not sound any less. But as of today they are not treating with medicine yet. I'm praying hard it closes without meds or surgery & soon.

Daddy got to hold baby girl for 2 hours today. It is just amazing how well she does when she's laying on her parents! Specifically she does not have any negative alarms. If she alarms its because her oxygen needs to be turned down! It's a great feeling that she needs us as much as we need her.

We finally got to spend some time with her where her both eyes were open! It's so amazing to be able to look into her eyes after 14 days!! She's 2 weeks today!!

Today the doctor asked me if I minded showing my daughter to a family that was visiting. It was a mother and her 23 year old son who was born in this same NICU at 26 weeks and 1lb 12 oz 23 years ago. He just graduated from K State. I could tell from our brief visit that he was intelligent. It gave me hope. He had never seen a baby that was the size he was at birth. The mother cried from the memories of what they went through in their 6 month stay. The son brought pictures to show me how small he was. The mother made a comment the made my mind spin. She said that it was so sad that there are women aborting babies at this age and here I am trying to save mine. I had no idea it was legal to do that at this gestation. *Not looking for a debate, just was sharing my day.

Please pray that Briella's PDA closes soon and she continues to tolerate her feedings.

The extremely cute hats in our pictures were made by Kati Smith. She has an Etsy shop where she makes photography props that are amazing!!!
http://www.etsy.shootbabe.com

Wednesday, October 17, 2012

Day 13

We did not find out the results of Briella's head ultrasound. She weighs 670 grams now!! I put in 11 hours at the hospital today. We brought Miss Aubrey up to see lil sis before they stop allowing kids due to flu season. Aubrey told her that she will miss her but soon we will be bringing her home and she will so in the backseat with her. Aub told her that her bed at home is way bigger.

Mommy got to hold Briella for 2 hours today. It felt like 20 minutes. I hate having to let go. I got spit up on for the first time with her today, and I was thankful for the spit up. I hope that happens a million more times. I had trouble leaving the hospital tonight. I think it's easier for me to leave during the day. At night it's just more upsetting because its dark out, it's dark in her room and that's when babies are supposed to be home in their beds.
Briella has both of her eyes open now although I have only seen it for a couple of seconds here and there. Hopefully I'll be able to steal a picture of them open tomorrow.

Please pray that Briella's brain bleed and heart PDA are resolved soon and that she continues to tolerate her feedings and stay infection free.

Tuesday, October 16, 2012

Day 12

Again today we had a peaceful day with not a lot of developments. They have started fortifying the breast milk with extra calories so that she can start getting big. Although she is now over her birth weight by 10 grams I believe. We have our fingers crossed that she continues to tolerate her feedings now that we are adding to them. She is up to 10ml every 3 hours.

Tomorrow she will have her 2nd head ultrasound. We are praying that her brain bleed has absorbed on its own. It's kind of getting to a scary point. Dr told me today that they will have to treat her heart PDA as soon as Briella is no longer going down on her vent numbers. So basically the 1st day that she just stays the same numbers and doesn't improve her numbers. We are scared to start the heart medicine because A) it can cause more bleeding in the brain B) her feedings will be stopped C) her kidney function will decrease D) she won't have as much urine output E) there's still a chance the meds won't work.

Today was my day to hold Briella. It is a better feeling than anything I can imagine. Once she is put on me she is so calm. She slept the whole time. She fits so perfectly in my bosom. That hour always goes by too fast. I love her scent. She still hasn't opened that 2nd eye yet. In due time.

Sometimes I catch myself mourning the end of my pregnancy. I'll feel sad that I never got a huge bump, or that I can't feel her kick anymore. I have moments that catch me off guard and I just start crying. Once was seeing parents leave the hospital with their newborn baby for the 1st time; Brian reminded me that we will get there. Walking into a maternity store to buy nursing bras and seeing all their winter clothes that I should be shopping for. Today when getting my flu shot, I guess just remembering all of the blood work & shots I had in the hospital and how I wished I was still in the hospital with her in me. Then I am reminded when I get to her hospital room every morning that I am so lucky because I got to hold my baby and ooh and awe over her way earlier than other Mommy's. I get to watch her mature week by week in person, while I study her gorgeous face and watch her hair grow. I thank God for my blessing, my miracle. I awoke this morning so happy and thankful. I feel so proud of both of my daughters. I feel complete. I feel thankful to be able to go to the hospital every morning, I love doing it. I am so thankful for my life right now.

When I was in labor, obviously we did not realize I was in labor, I kept screaming out loud for God asking him why he wasn't helping me when I was begging for his relief. I didn't understand that he was there listening to me the whole time. He was saving my daughter's life. I knew as soon as Briella was out of me that God was there. I have never felt anything more sure. I was in total peace and not worried. Just kept telling Brian that everything was okay and not to worry. I called my mom, then my dad, then my brother. I was calm, which if you know me you know that I usually do not stay calm in tense situations.
I just wanted to share that we truly feel every prayer with the progress of Briella's health. Please keep them coming.

Picture is Briella holding her own binkie (the long white stick)

Monday, October 15, 2012

Day 11- Daddy got to hold her!

Briella had a good day today. She was weened down on her support. She had her last iv line pulled from her belly button. She is up to 8ml on her feedings. She is up to 660 grams in weight!
Guess what our sweet lil angel did today! This little tiny girl ripped her feeding tube out of her stomach & out of her mouth!!!! I can't believe she was able to pull it all the way out!

Daddy got to hold her for the first time today. He looked so comfortable with her & said her couldn't wait to be holding her at home watching football.

We did a little work in the nursery tonight. I have put a picture of our progress.

I guess no news is good news! Tomorrow is my day to hold again!

Sunday, October 14, 2012

Day 10- First Time Holding Her!

Today we got the best news. After they removed her line in her belly button I could hold her!!! I cannot even describe the peace I feel now. After holding her, I just can feel that everything is going to be alright. I was really scared that she was going to be angry that she was moved, but as soon as they put her on me she went right back to sleep. Her numbers were so great the whole time-actually too good!! They had to keep lowering her oxygen because she was doing amazing on her own. It takes a team to move her. They have to come tape all of her ventilator equipment on the chair around me. I could feel her "burrow" into my chest. She knew it was mommy. I was able to hold her for about an hour an a half!

We are now allowed to hold once a day as long as her numbers look good. Tomorrow Daddy is going to get to hold her! I can't wait until Tuesday when it's my turn again!!!!!!!

P.S. the really cute lil white hat that is in the pictures below was made by Kati Flowers Smith!!! Thank you so much Kati!!!!!!
And there is one picture with her lil eye open (and she has the binkie in her mouth-the long white stick)!!!

Please pray that she continues to tolerate her feedings (she is up to 7ml every 3 hrs!!) Pray that her PDA closes and her brain bleed is resolved.

Saturday, October 13, 2012

Heart Echo Update/ Day 9

Briella has a large PDA (Patent Ductus Arteriosus) in her heart. Right now it is not causing any other symptoms. They are not wanting to give her medicine for it right now because the meds cause bleeding & we don't want that with the brain bleeding. So we need the brain bleed to stop so that we can treat the heart. Also the more time that we wait on the meds the less likely it is to work. Another issue is the picc line. In 3 days she can be at full feedings which is 10ml every 3 hours. The only medicines she's on can be given orally. So they are hoping that she tolerates her feeds so they will not need to have a picc line. If they do have to start the heart medicine, they will have to stop the feedings. It will also cause her kidneys not to work as well and could cause problems with her stomach.

Now for some good news.. I just got a call from Briella's nurse that she has popped her right eye open!! I knew she was going to be an ornery one all along. I've been telling her for days that she can't open them until I get back. Well she already isn't listening. The nurse said that its just a dark pupil at this point but will change as she gets older. But maybe we have a brown eyed girl on our hands?! Can't wait to see the princess with an eye open tomorrow!!
She is also up to 650 grams which is her birth weight of 1lb 7oz!!!

Please pray that the PDA closes on its own soon. Pray that Briella continues to tolerate her feedings. Pray that her brain bleed is resolved soon and Pray that she stays infection free.

Friday, October 12, 2012

Day 8

So we got the news today of the left side level 2 brain bleed. Briella also had her heart echo today but we won't have the results until tomorrow morning. The echo upset her a lot & she had many alarms during it. It was about a 20 min procedure & she got irritated from being pushed on and having ultrasound goo all over her.

A second nurse practitioner tried to get her picc line in today. They tried 3 times in her leg and were unsuccessful. They said that they were able to get to the artery but when they tried to thread it, it would burst. So I was told they will let her rest tomorrow. She is sedated from the morphine each time. Right now she is what they call "Riding the vent." That is where she is not initiating any or many breathes on her own. They have started her on caffeine to see if that helps her initiate. The inside of her elbow is black and blue from where they tried the picc line last night. I am so sad to see my baby hurt and have to go through this multiple times. We have to wait to see what the dr says tomorrow but the dr will either try it themselves or they will do a small surgery on her called a cut down. They will cut a small area open & try to thread it in that way. The risk of infection is higher if they continue to use & leave the iv's in here belly button in.
Briella's feedings were also upped to 3ml every 3 hours! Although I found a time today where milk had come up and run down her mouth, we are hoping it was a fluke and that she is tolerating the feedings well. She is still having dirty diapers so that's good.

I contacted Children's Mercy Hospital today about a possible transfer. I was told that at the moment there is nothing different they can do for her than what is being done. I was hoping that she would have a dedicated nurse 24hrs a day. But it is the same as where we are, 1 nurse for 2 babies. It's just hard for me right now because the other baby our nurse shares seems to have lots of issues & constant alarms. While I'm grateful we aren't having that many problems I also get frustrated when alarms ring for too long or things don't go the way I understand that they are supposed to. Children's mercy said the big difference is that they have specialists on staff. But at the moment Briella isn't in need of specialists yet. So we will stay put and have faith that where we are at will provide top notch care for her.

Please pray that Briella stays infection free, that they are successful in putting the picc in, that she continues to tolerate her feedings, that we get positive news from her echo and that the brain bleed resolves soon and does not progress.
Thank you so much for the prayers and keep them coming!!!

Head ultrasound update

Just wanted to post a quick note to let you know the results of her brain ultrasound yesterday. Briella has a level 2 bleed on the left side of her brain & the right side is normal. They are going to monitor it in a week to make sure it's not getting worse. Hopefully the blood will just absorb on its own.
Please pray that this is resolved this week.
Doctor said that if it does not worsen and if it resolves on its own she can still have normal development by the time she reaches school age.
At a level 3 bleed, 50-75% of babies will have cerebral palsy, hearing or vision loss. We would appreciate diligent prayers that this is resolved soon.

Thursday, October 11, 2012

Day 7- 1 Week Young

Our little miracle is a week young today!! Almost back up to her birth weight!! We are so grateful for this tiny person to remind us how amazing life is.
Daddy got to see her finally today!!!
Briella's head ultrasound wasn't until after 3pm so we will not have the results back until tomorrow. I waited until 4:30 to leave today, waiting on them to put her picc line in. Her nurse told me it would be tomorrow since it was so late so I came home to be with Aubrey. They ended up trying to put it in but were unsuccessful. They have her sedated with morphine. I'm starting to get frustrated with her care. This morning when I came in to her room, I saw that there was an open pack of formula. When the dr made her rounds, I asked if they had decide to use formula, and she said no. I pointed out what I saw & they read her charts & saw that the nurse had given it to her. We have a different nurse every 12 hours. A nurse who isn't familiar with Briella. I was told that if they ran out of milk they would just let her hang until more came since she is also on iv nourishment. They were too worried that formula would mess with her gut.
Today an alarm was going off & I sat in the room for 5 minutes before some other nurse came to silence it. The entire time I was watching my daughter become adjetated from the noise. Her hearing is the last thing to develop so she is so very sensitive to noise. Another time her oxygen level had dropped below the safe line & her alarm was going off. A nurse should've been in there to start her oxygen. Instead I was just begging her to be strong an get her numbers up. No one ever even knew that happened.
Please pray for Briella's staff to be alert to her needs and that they have the knowledge to preform all procedures correctly. Also please pray that we hear positive news tomorrow from her ultrasound.
She is also scheduled for a heart echo tomorrow. Her murmur is still really loud and hasn't fixed itself like they hoped it would. If the echo shows that her heart is under stress, she will be put on medicine. So pray for positive results from the echo as well.

Wednesday, October 10, 2012

Day 6 NICU

Mommy was apparently very eager to get to the hospital this morning. It was a hard 1st night without her. I got pulled over for speeding on the way there & completely lost it. I'm sure the officer thought I was a basket case. There is no way he understood what I was saying. He told me that driving upset was worse than driving drunk so I pulled over to a gas station and got myself together. He let me go on a warning. The 1st time I had ever got a warning & I am thankful!

Briella has done so good with her feedings that they've doubled the amount to 2ml every 3 hours!!! She had her first two dirty diapers today which is great news. It means things are working properly. I never dreamed I'd be so thankful and excited over poop!
She has gained 10 more grams and is up to 620, which is about 1lb 6oz I believe. I cannot wait to see what she weighs in a week!

No huge changes in her care today. She is going to have a PIC line put in tonight or tomorrow. A little scary but I have faith that her nurses are knowledgeable & will do it correctly. Of course they have to tell me all the things that can go wrong.

Also tomorrow she will be having her 1st head sonogram. It is common that babies her age experience a brain bleed. I am pretty nervous about this. I pray that she passes this test. Daddy again missed out on seeing his princess. We need him to feel better quick because Brie is missing him!

This little girl is trying so hard to open her eyes! I told her she can't do it when Mommy's not there! I am so excited to see what she looks like!

Please pray that we get good news tomorrow from the sonogram and that Briella is not in pain from the pic line procedure and that everything goes well.

Tuesday, October 9, 2012

Day 5 NICU-Mommy has to go home

I can't find a word to describe today, hard just isn't the right one. Daddy still wasn't feeling 100% so Mommy had to say goodbye by herself. I hope she doesn't know that I'm not there all the time now. Coming home to see her nursery was gut wrenching. Seeing all the preemie clothes I had started to get, an how she is no where close to fitting in preemie. She is a micro preemie.
I picked Aubrey up from school. She was so excited to see me & ran to the car. We had dinner together at the kitchen table. We hadn't done that since our anniversary dinner. Then we spent the night snuggling in bed. Mommy passed out while Aubrey played with my hair. When I woke up, I felt horrible. Every single muscle and bone in my body ached. I told Brian I felt like I got hit by a truck. Then I quickly realized that I feel like I gave birth naturally with no pain meds. For the 1st time I am no longer being pushed by adrenaline. I had felt fine, amazingly good even immediately after birth. My endorphins were on a high. For those who haven't been through birth(s), no matter how big/small the child is your body still goes through full labor. Full intensity contractions. I was spared during the 3 minutes of pushing since she was small. Pushing was very equivalent to Aubrey's birth. For me that is the easy part because it is a relief to push, it makes the pain stop. However labor that the body goes through was the same as a full term baby.
Briella was off light therapy today. Her numbers looked decent all day so there weren't any significant changes. When I left her she was doing tummy time & all bundled up. She has resumed feedings today (YAY!!!!) she gets 1ml every 3 hours. I am scared she is going to go through my supply quick & that I won't be able to keep up. My milk STILL hasn't came in. Starting to get nervous. Apparently it's slightly normal since the trauma surrounding birth & due to my body being no where near ready.
Can't wait to see my lil girl tomorrow!!!

Day 4 NICU

Briella went back on light therapy today. I love her sunglasses so thats ok with me. She also finally started gaining weight today! Yay!!! She was 590 grams yesterday & 610 today! She had her first feeding at lunch today. Mommy was VERY happy & excited about this. I'm ready for her to start growing. She did so well & digested everything and tolerated it perfectly that they gave her dinner too! She had a blood transfusion this morning and it didn't phase her a bit. Her blood gasses are giving her a little trouble, too much alkaline? So we had to suspend the feedings until those numbers look better. But she is looking great with all of her respiratory numbers.

The Dr this morning said she was proud of our little girl for doing so well. The Dr, all her nurses and myself believe that Briella is actually 5 or 6 days older than what she is. Every one of her care takers have said that her skin is in the best shape for a baby born right before 24 weeks. She isn't having near the problems that a 23 Weeker has. As you know from previous blogs, Briella has consistently measured 5-6 days ahead since her first sonogram. However my OB would not change the due date unless it was more than a 10 day change. That would've been fine with me except that when things took a turn for the worst when I was still pregnant, the dr was going to let her pass in our arms just because she wasn't to a certain day yet. Which turns out she actually was. It makes me angry on so many levels. I believe we should've been using the due date the sonogram showed. I am thankful that we pushed to transfer somewhere that would help us. And I am thankful my OB helped us very quickly find a dr that would help.

We were told today to prepare for the next 72 hours as there will most likely be lots of constant changes & tweaks to her care. She is showing signs of coming off the "honeymoon" stage. I'm trying very hard not to let it tear me apart. But it's so hard to start to see alarms that have never gone off. Tonight, twice she "desat". That means one of the numbers they monitor dropped too low & they had to give her oxygen. She has been doing amazing with room air. I am still so proud of her & keep telling her that. I tell her she just has to fight through the tiredness and stay feisty.

Tonight she was just moving around a lot and couldn't get comfortable. So I put my hands over her holding her arms and legs firmly. She loves firm holds and doesn't like light touches. The nurse said she was told she had to ask the story of her birth and her name. So I told the story while holding her. The next thing we knew it was an hour later an Miss Briella was having the best numbers of the night and was so peaceful. She just loved hearing the story of herself being born like a rock star as the doctor said. I probably held her for 3 hours straight tonight. Daddy wasn't feeling great today so he couldn't see lil missy. He was sad so Briella surprised daddy & sissy with a Skype session. Briella flailed her arm and Aubrey thought she was waiving so started waiving really big back. It was too cute.
I took my hands off her and out of the incubator and told Brie that I had to go to sleep. I then stood around for a moment to watch her and she would start being restless again. So maybe 3 times I kept going back in to calm her down then walk away. Finally I decided to tell her stories until she was asleep and I could sneak out. I told her how her big sissy saves all her money for a trip to France. I told her how first I think we should go to Disney then a beach in Florida. I told her how her grandma & grandpa have a condo in the Bahamas and how Daddy likes to go there. I told her he will make us a big sand castle an we will pick up seashells. I promised her I would let her pick out any color she wants for her room, even if it is pink. I promised I would fight Daddy for her (he said no pink.) I told her all about her cousins that were coming to visit in a week. I have fallen in love with being able to sneak up there again before bed and hang with her for awhile then. It has become my favorite time with her. The nurses usually give us a little more privacy at night so I can talk to her all I want. Tomorrow I have to leave the hospital and I have no idea how I am going to handle it. I don't want to go home. I want to stay with her. I will only be able to be with her during school hours the majority of the time now, while Brian will do the evening visits. I am grateful for the extra time the hospital let me stay but I am already panicking about not being able to run upstairs and check on her after each blood gas check or running her milk up to her every 3 hours. I know Aubrey is really needing to get back to her normal routine and I am excited to be able to snuggle with her again. But my heart will not be complete until we can bring Briella home. I am so praying that she will be home for Christmas.
The last pic is of her holding in her binkie on her own. I also posted one of what her room looks like with all the equipment.

Sunday, October 7, 2012

Being born En Caul

I knew from how all our nurses & drs have responded that Briella being born in her sac was rare, but we didn't realize how rare or special it is. 1 in 80,000!!!!! It is called being born en caul. People who are born en caul are called caulbearers.

In many cultures the Caulbearers were considered to be “Kings by right,” due to the nature of their births and their leadership abilities. This is one of the reasons why certain Buddhist groups, to this very day seek out Caulbearers to be brought up to become Dalai Lamas.

Caul bearers are vital human beings to the growth and insight of humanity. What they see, hear, and feel, tells tales of things to come, things from the past, and things we all need to know. They are messengers who are in touch with the world beyond the physical plane. They are sensitives, visionaries, shamans, mediums, and healers. Writers, actors, poets, artists. Each has their own unique gifts to share with the world, and yet the unnerving presence of a caul bearer tends to repel the very people who need them the most.
Most caul bearers are "truth tellers", with the tendency to blurt out the silent, lurking evidence of the "elephant in the room", with casual abandon. Caul bearers are mirrors for others.

Throughout history the powers that be have repeatedly attempted to destroy the Caulbearers because they were seen to be messengers sent by a higher force to guide mankind in matters both physical and of a higher spiritual nature. In ancient times they were held in high regard for their knowledge in a wide range of disciplines, and therefore became known as 'priests' which originally simply meant 'teacher.' This was long before the notion of the religious priest was ever conceived.

Many are great natural healers, which trait may be manifested by the laying on of their hands, or remotely from a distance. Many are considered to have great ability in matters of judgment and ruling nations and often possess insights which are difficult to appreciate by other people.
So if we were Buddhists living it Tibet we might have the next Dali Lama on our hands :)
Famous caulbearers are Charlamagne the great (who is in Brian's ancestry tree) & Jesus. There are a lot more but those were significant enough for me.

Day 3 NICU

This morning when we were in the cafeteria for breakfast, we ran into the on call trauma doctor that delivered Briella. He told us that the nurses said they didn't even know that babies could be born that way. He said she looked like a dinosaur egg. He gave us a few more details of that night & we had quite the emotional breakfast.

Briella is off the light therapy & sunglasses today. We found out she has a very loud heart murmur. It is not symptomatic so we are hopeful it will fix itself as she matures. If not there is medicine, and surgery is a last result way down the line.

Briella's nurse made her a teeny tiny pacifier. It is so dang cute. It fits in her mouth with the tubes & she just sucks away. Melts my heart. I will add a pic of the binkie, it's on a long white stick with a nub at the end.

Today I got to take her temperature, help weigh her & change her bedding twice. I love being able to feel like a Mommy. I love having her hold on to my finger. I never want her to let go. It is the closest I can be to her and its the best feeling in the world. I can't help but cry talking about holding her finger. I was so scared to touch her for the 1st day. I didn't want to disturb her or hurt her. She just looks so fragile and tiny. But it is good for my heart.

Today was measurement day. Her head is 21cm around, which I think is about 8 inches. She is 12 inches long. She hasn't grown since she hasn't started feedings yet so she was actually 12 inches long at birth. She weighs right around 1lb 5oz. Tomorrow they are talking about starting her feedings. Im excited to get her growing! I am a little nervous on the challenges of breastfeeding, but hope all will work out. My body just wasn't ready to be supporting a baby yet. They held off on her blood transfusion today so it will probably be tomorrow that she has it.

All the drs & nurses make it known that they are eerily surprised how well she is doing. They have told us that babies usually can hold there own for the first couple of days and then problems start to arise. They say she is still "honeymooning." I am holding on to the hope and faith that all of you providing us with prayers are going to carry us to health. I know God has this.

I am going to do a separate update about the special meaning behind being born in the sac. One of my pregnancy nurses stopped by to tell me about the sacredness of it.

Day 2 NICU

I cannot stop staring at her. Briella is just such a miracle. I was taken back today when one of the nurses was commenting on what a trooper she was. She said that she heard she was born in a bed. I forget that I was not in labor & delivery room. I was not in stirrups. I was laying in my bed. Crazy for me to think about. None of this has set in except that there is a tiny girl that I love with everything I have.
Today was uneventful. Which is great. We have hit the 48 hour mark. Every 4 hours she is rotated so that her skin is not getting too worn in one place. Her gas tests have been pushed back from every 4 hours to every 8 hours since she's doing well. After being adjusted to a new position tonight, she wasn't happy. She squirms all around & opens her mouth like she is crying. I put my hand on her backside & whispered to her for awhile. She was so calm & still & peaceful. It made me feel like I was actually able to do a "mom" job & not just sit around and watch. I got to comfort my baby and it was amazing. Then every time she moved the rest of the night, I was like "oh she needs her mommy!"
I am getting to stay an additional 72 hrs at the hospital since she's in the NICU. I love to just be able to be right downstairs from her.
I don't think I've said this yet, but after delivery Thursday when they asked her name there was no doubt that her middle name should be Colette. For those that read the significance of the name Colette know how true it rang for us.
They gave me a little blanket dolly thing to sleep with on my chest. They put it right by her nose in the incubator so she can smell mama. They say she will recognize the scent from being in me.
She is on light therapy to help her skin & looks so dang cute in her little "sunglasses."
Tonight she will have to have a guard replaced that holds the tubes inside her in. I pray that she will tolerate all the movement well & will stay comfortable.
She will have another blood transfusion most likely tomorrow.
I'm off to sleep so I can hurry up & wake up and go see the princess.

Saturday, October 6, 2012

Her 1st day & update on her delivery

She started the morning out with a blood transfusion which went great. She will continue to need them, they are considered a normal process for "micro preemies".
She will continue to have X-rays daily & tests done every 4 hours to monitor her for the 1st couple weeks I believe. She has been on room air & no oxygen. She will likely need it in the future though. She does have a ventilator to breathe for her. But she does initiate breaths on her own. Her blood pressure was low so they put her on some meds. She has done well & I believe by tonight she was weened off.
I am learning slowly not to fall apart with every alarm. She will have spells, we just need to get through them 1 at a time.
Briella was baptized today. The nurses found her a hat little enough to wear since she couldn't be in a baptismal gown they wanted her to still look pretty. I am so overwhelmingly pleased with the NICU staff. They are the most kind souls. I feel like when I'm not there Briella is definitely getting love.
Big sister Aubrey got to come visit today. Aubrey said she was very cute & has big feet. Briella's diapers are smaller than Aubrey's doll diapers by about half the size.
After speaking with Drs, nurses & Brian & I discussing it with ourselves, we've learned a little more about her delivery.
As much pain & agony as I was in & angry over no pain meds, I understand now that it was Gods will & He was with me the whole time. If you read the update about the chaotic birth, well here's some more details.
I was in too much pain to be paying attention to the monitors. But Brian says he knew exactly when the mood in the room changed & stuff hit the fan. During all the pain, her heartbeat dropped off the monitor. They could still see it, it had just bottomed. My nurse had pulled the "emergency string" in my room & within minutes incubators & tons of people were there. When I was telling them she was coming, the nurses were looking & telling me no that I was having a very large hemorrhage. My water had not broke, so what the nurses were seeing was my entire sac coming out. This apparently is very rare. That is why they didn't realize baby was coming. When the in call OB checked me, I heard him tell the nurse that baby was right there. What had happened was that my partial abruption placenta became completely detached from my wall. We were told months ago if that happened then the baby has less than 2 minutes to survive due to no oxygen. If I would've had a c section that would've taken 30 minutes. Brian had seen the sac come out, but thought it was afterbirth. He was still waiting & watching for the baby to come out next. He says he looked over & saw them working on her & had no idea how she got over there. They had to cut her out of her sac. There was no cord to cut because everything had already detached itself. Apparently micro preemies who are born vaginally have a lot of bruising & their body has to work on healing that the 1st few days. However, because she was born inside her sac, she had no bruising. It protected her coming out. And also protected me from hemorrhaging. There was such a small window of time for her to be born alive. There is no other explanation of all of the things that "went wrong" so that she would be born to have a fighting chance other than God's will.
Please pray for her caregivers to have the knowledge to give her the best possible care & for her to stay clear of major complications.



Friday, October 5, 2012

I Tried to Tell Them!

When I was taken off the magnesium yesterday I was still contracting. They were slowed to about every 10-15 min. I just tried to stay so still all day but they grew closer. By dinner time they were painful. I had asked for relief & they again gave me anxiety meds. By 8pm I was begging them for a pain reliever. I was cussing, crying & in what I told them felt like child bearing pains. They told me my uterus was just irritated from bleeding causing mini contractions but they weren't real because they weren't 50 seconds long. Mine were 40 seconds long. I was finally approved for newbane (sp?) & that immediately took the edge off. I was looking forward to watching a show on tv with Brian & hoping to get some rest. Within 15 min I called nurse again & told her while the pain is more manageable with the drug (which makes you feel loopy) I was climbing back up to an 8 on a pain scale. They kept asking me questions like "okay so your pain has doubled since we last asked you?!" I felt like they thought I was just trying to get the drugs. I reached another level of pain I couldn't take. I was begging them to help me. Screaming out loud "help me" over & over with every contraction. They had given me a 2nd dose of newbane. Brian was not too sure what to think. All day nurses had told us I would just be dealing with pain from my irritated uterus that causes painful mini contractions so not to get concerned. Use a heating pad.
Everything went kind of fast from there. I was holding a towel down there because I was afraid of hemorrhaging again. I said something is not right. I want the Dr to come to the hospital. The dr told them via phone to put me back on the magnesium. I started to not just have unbearable contractions, the worst pain I have & hopefully will ever go through, but I started feeling down there that it wasn't right. I repeated myself that it wasn't ok & that I needed an epidural. I said I wanted to be taken for a c section. I was finally told that the on call trauma dr Would come do an emergency c section. I said I needed the anesthesiologist quick. I waited in pain for about 10-15 minutes, thinking I was dying. I was so scared for myself. I knew I couldn't have er vaginally due to the previa. It would cause me to hemorrhage. I told them I was going to die of a heart attack from the pain. About that time the nurse hit some special button & next thing I know they are wheeling in a baby bed. Lots of nurses were in the room & a couple drs. I kept taking off my oxygen & yelling help me! I need the anesthesiologist!! I need my pain gone! Someone help me. I told them she was coming & they were screaming not to push. I couldn't hold her in. It hurt soooo bad not to push. Once the dr examined me I heard him tell the nurse that she is right there. He told me my baby was in trouble & I needed to push her out. Brian who was behind me, told me I had to push. I could hear he was so scared. I just pushed, they told me to stop, then told me to push again & I felt a relief. It was the best feeling in the world. At that point I jut became instantly calm. I was overwhelmed by a since of peace. I knew God had his arms wrapped around me & that my girl was a fighter. She was born in her sac. My water never broke. They took her out & had to cut her out of the sac. They said she tried to breathe on her own but then thy lost her. They gave her some medicine & she pinked right up. Drs were so surprised that she was more on the mature side of 24 weeks. Her skin was great. She looked just like a normal baby-just really small. Eyes shut.
We both got to be with her in her NICU pod where she's in an incubator. She was doing great. She was moving her feet & hands. She likes to grasp onto things.
I know that there will be setbacks all the time & maybe even daily. But I also know that Gods will is to be done. I she is strong enough she WILL make it. I am so proud of her. Our little miracle.

She is here!

Born Oct 4 10:52pm
Briella Colette King
1 pound 7oz 12 inches long
She is fighting & needs prayers. I am doing great. Brian is with her

Thursday, October 4, 2012

23 weeks 6 days-struggling

Yesterday morning they took me off magnesium as I was having no contractions & felt good. Bleeding started getting heavy around dinner. Then came the stomach tightening then cramping. The nurse said I just had anxiety so gave me a Tylenol for cramping & something for anxiety. Within half hour they were contractions & I was dilating again. These were most painful. Went back on the mag. My body boiled. Taste like batteries are in my mouth. All last night it only slowed them down. They were intense until about 530am. Still having contractions but not so painful & far apart. They are taking me off the mag again around 11am. Dr says hopefully it was just a bad night & I can have good nights. He wants to get another couple weeks out of me. I am so scared to go off. My pain from contractions hasn't been addressed. I don't know how many nights like that I can handle. Brian has to work & leaves early in the mornings. He is really the only person I want here or that i can handle seeing me like this.
PLEASE pray that heavy bleeds & contractions stay away & that I am able to stay calm & comfortable through this. The only thing that can get me through this is prayer.

Tuesday, October 2, 2012

23 weeks 4 days

Yesterday was a no good rotten terrible day. The contractions that started Sunday night grew more intense through the night. By Monday morning when my dr had came to check on me, I was in pain, had already had 2 bad bleeds ( tennis ball clots). She checked & said I had started to dilate. A friend had sent me an email saying that her nurses had told her before birth that they would do what they could but if they were told there wasn't anything that could be done they need to just enjoy the minutes they had. So I asked my dr if they would let me know like that. She said that the only thing they would do is "comfort care." Put a hat on her and give her to us. I felt at the very least I wanted her to try oxygen to see if she was a fighter & could have a chance. Dr said if I was wanting to try anything I needed to be transferred immediately. That's when it started getting hectic. I was told I needed a transfusion so one arm was being prepped for an iv while the other arm had started the magnesium to stop contractions. Then my dr said my new dr wanted me to have the steroid shots to mature babies lungs. I had asked twice about it & was told no earlier than 23 days 6 weeks. So was happy to get it. Then they said st Luke's on the plaza was full. Then said center point was full. So was transferred by ambulance to op regional. The magnesium started making me agitated. I was mad the nurse refused to hold my hand during the steroid shot. I was mad the ambulance ride was so bumpy. I was mad I had to give blood again as soon as I got here even though I had just given it 25 min earlier at a different hospital. I just went to a bad place. I wouldn't let Brian back in the room. My parents came & I just wanted to be alone. By the time I let Brian back in I was so weak. I could barely open my eyes. I couldn't talk, just whisper. I just had given up. I felt like I was laying there waiting to die. Brian fed me a string cheese & it literally took about 30 minutes for 1 piece of cheese. I didn't sleep. I was so scared of moving an inch. I hated the catheter. Every 2 hours someone comes in to listen to my lungs, heart & check my reflexes.

Today my contractions had stopped. They took my catheter out & lowered my dose of mag. I ate lunch. I walked to the bathroom. I felt human again.
While I still have a constant iv & get blood drawn every 8hrs & rest only in 2 hr spurts, I am in a better place. That magnesium was evil. It made me so hot & pretty much depressed. I allowed mom & Aub to come see me after she got out of school. My contractions came back but were very slow apart. I had a good dinner & a good visit with Brian's mom & am feeling at peace. Tomorrow if my contractions stay away I will be taken off the mag. So I feel hopeful that I can make it another week. I am weary however since I know for every good day there are 2 bad days, but still hopeful. Right now we are still on an hr by hr basis & their goal was to keep me pregnant overnight. Friday will be 24 weeks.
We are at a level 3 NICU now so they are prepared to do everything for her.

I see every single comment & message & feel the prayers. Please keep them coming. I wish I had the energy to respond to them all but I love to read them.
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