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

Wednesday, January 30, 2013

Rooming In!

So Briella did great throughout the day today. The doc came in right before her 3pm feeding & said we are a go for rooming in tonight (Wed). I was soooo excited!!! Brian & I packed up 4 months worth of baby items & souvenirs that had accumulated in her room. Brie usually falls asleep after her bottle, but I totally believe she felt our energy. She was so awake & looking around like what is happening. The nurse rolled her crib down the long hall to our room. I walked right next to her & was just beaming with joy/excitement/anxiousness & she was just enjoying her ride.
The room is similar to a hotel room, has a microwave & fridge. It is nice that I can just grab the milk and warm it up without going anywhere to get it! Before, it is in a locked area that only staff can go. It's treated just like a prescription that way milk does not get to the wrong baby!
I was so excited to show her the snow so the 1st thing I did when we got to the room is opened the blinds. She just stared so intently. She hasn't had a widow since she switched rooms, and she was in a lower bed. Now she's up higher & I think could really see. She stayed awake through her 6pm feeding. I couldn't get her to go to sleep! I tried lights on, lights off, medium lights on, bathroom lights on. I tried her mobile. I sang & rocked. As soon as I would put her down in the crib she would just be so awake. It finally dawned on me that it is probably too quiet for her! She is used to constant alarms & beeping equipment & other babies screaming & people talking. So I flipped through some music stations on the tv & decided to try out jazz. 5 minutes later she was asleep!

I am having fun figuring lil missy out & can wait to be home so we can add big sister to the mix. I just cannot wait until my 2 girls can snuggle. Life will be great. Life is great. Thank The Lord!

Tuesday, January 29, 2013

So Many Changes!!!

Yesterday Briella started showing signs of a feeding aversion. She is at a really high risk since she was born so early. There is nothing positive about them. Brie would have to have a feeding tube placed surgically in her stomach and could have it for years. She generally takes the bottle well for me when I'm here so they thought it would be a good idea for me to stay the night here and feed her myself every 3 hours. I was so excited because it would be the first time I was with her 24 hours straight since the day I was discharged from the hospital in early October.
Briella has taken 7 full feeding a for me. I was able to give her a bath & she now LOVES bath time!!! She was so happy!!! Last time I was here for a bath she screamed her little head off!
Well here's the exciting news. Apparently Miss Brie just needed her mama. I have been able to get her to take all of every bottle every three hours. They said Briella can room in tonight & go home tomorrow afternoon. However, during discharge paperwork they decided that she is close enough to 4 months that they need to do her 4month vaccinations before she goes home. So new plan is car seat study right now, vaccinations at noon. She will have 5! One of them is the synagis booster to help fight off rsv. Last time she had vaccinations at 2 months, it was horrible. She had soooo many spells they thought she was sick. But she wasn't, it was a bad reaction to the vaccines. So I will stay the night tonight again giving her all bottles. Then if she isn't having horrible reactions she will room in with Brian & I tomorrow night & home Thursday!!!!!!!!!!
Thank you for praying last night!!! It looks like it is working!!!!

Monday, January 21, 2013

2 Steps Forward, One Step Back

We received really great news this week! Briella passed her hearing test in both ears!! Mom and Dad had been a little concerned about her hearing. She hadn't been responding to us when we talk to her, apparently she's just really tired. She also slept through her MRI and never woke up-but they put little yellow ear muffs on her.
The MRI results came back normal! They could see old blood from her brain hemorrhage. But nothing new!

Briella has been taking every bottle every time for days now. Her feeding tube was pulled out a couple of days ago. However, she is so sleepy now from all the energy it takes to get up every 3 hours & eat at least 60ml. Being sleepy causes her to not want to finish the full 60ml & then when we try to get her to take her full amount she has spells. She had a big one yesterday. Her discharge date WAS tentatively Wednesday. But we are now pushed back to next week (hopefully). Also, she has to stay because her lack of weight gain is now an issue. Since she is waking up around the clock she is burning so many more calories than before when she just slept through her feedings & it was just sent to her belly by feeding tube. Brian & I & her nurse made the decision to put the feeding tube back in for a couple days. We are hoping that her sleeping through a couple feedings will help her alert level so she can have quality bottle feeds when she is awake with no spells. We are also hoping it will help her gain weight again. I feel like we made the right decision & she will be back to her great ways in a couple days.

Please pray that the ROP goes away on its own & that Briella continues to stay healthy. And also please say a prayer for Briella's sister Aubrey who is having her tonsils taken out tomorrow morning.

Pictures are her ear muffs from MRI & her without a feeding tube!

Tuesday, January 15, 2013

We Passed the 100 Day Mark!

On our 100th day, I dressed Briella up in a cute outfit and we had a little 100 day celebration. I brought the nurses a cookie cake to thank them for everything they have done. I still cannot believe I get to hold my baby everyday. I am so thankful God chose me for this miracle.

It is so great to hear from the doctors that the ONLY reason we are in the hospital is so that Briella can learn to take all of her bottles. Yesterday, she took 38mls/58mls for me, then her next bottle she drank the whole thing in 20 minutes! She usually does about half that in 30 minutes so I was very excited. Then she drank all of her midnight & 6am bottle also!!! I kept thinking, ok this is it. She is now going to take every bottle and we will be home for the weekend. I'm so proud and we are closer than we were last week.

Briella's boyfriend Knox is going home this weekend!!! I am so happy for them!

Briella has passed the 7 pound mark also! She is over 18 inches long. They have moved her down to 22 calorie Enfacare mixed with breastmilk. She will have 2 bottles a day of all enfacare to get extra protein. Also her iron & vitamin D have been stopped and replaced with a multi vitamin. The nurse says that means were close to going home!!!!!

Please pray that Briella stays healthy & infection free. Pray that her ROP resolves itself. Pray that her MRI comes back normal.

Wednesday, January 9, 2013

Day 97

After another visit from the physical therapist we learned that Briella is now favoring the opposite side of her neck then she did 2 weeks ago. Also, she is very stiff. Briella's shoulders are too far back. That will give her trouble when it comes time to push herself up. Her hips are too forward. We now do exercises before every feeding.

The specialist came to assess Brie about the crater in the roof of her mouth. She gave us tips and basically said it will probably take her awhile to learn. We have been trying the bottle since December 14th.

Briella's last day of N-trainer therapy is Friday. I do believe it has helped. Today she took 50 out of 58 ml's for me!!! She had no spells! I was so happy & proud. She stayed awake for over an hour and a half and was too tired the next feeding, she took 12.

Briella is no longer in preemie clothes!!!!! I cannot believe it!! It was bitter sweet for me. I thought I would be bringing home a little preemie. I really didn't want to bring any newborn clothes to the hospital. I wanted them to be special and just for home. I felt the same way about her mobile. I can't explain why really, just that her whole life has been at the hospital and I wanted some things to be special. But I guess 0-3 month clothing can be special :)
And to be honest, I only took newborn clothes that had been passed down from sister. All her new clothes I left at home. If she decides she needs to be at the hospital a couple more months then I will bring them. I'm soooo ready to be home. Having Briella in a different state at night is the hardest. For those who didn't know, we live in Missouri and Briella is in a hospital in Kansas about 35 minutes away. I really wish I could just drive up there to kiss her goodnight, then come home. But I am thankful for this hospital no matter how far away. If you haven't been around from the beginning, the hospital I was originally at close to my house was just going to put Briella in our arms and let her pass away. Without even trying oxygen! Wouldn't even transfer her! So we switched 4 days before she was born. Thank. God.

Please pray that Briella stays healthy & infection free. Pray that the ROP clears on its own, and that she learns the bottle correctly.

Sunday, January 6, 2013

37 weeks gestation

We found out on Thursday that Briella has stage 1 ROP in both eyes in zone 2. We are hopeful it will resolve on its own. She doesn't have a follow up appointment for 3 weeks, which means the eye dr isn't too worried. This was her 4th eye exam.

Friday we surprised big sister with a trip to Great Wolf Lodge (an indoor water park hotel). Grandma & Grandpa got us a night there so Aubrey could have one last fun outing before sis comes home and we are in isolation. We stopped at the hospital on the way to drop off some milk. Brian & Aubrey waited in the waiting room while I ran back to see Briella. I asked if Briella could be taken to the main hallway where her sister could see her through glass next to the elevators. The staff approved it as a one time thing. I was crying as soon as they said we could. Just so excited for my girls to see each other. Aubrey hadn't seen Briella since she was the length of a Barbie doll. Aubrey didn't know I was going to ask in case it couldn't happen. So I ran to the door and motioned to Brian for Aubrey to come over. The nurse had wheeled Briella to the hallway. We couldn't get close to the glass because of her security tag, but as soon as I picked Briella up and turned around Aubrey was running at us. She ran to the locked door and pulled on it with all of her might. Giving it a couple good tugs. The nurse went out and explained that she had to look at her from the glass since it was flu season, kids can't come in. Briella had her eyes closed the whole time, but Aubrey was so happy just waving and looking at her sissy. I asked her later that night what she was going to do when she went through that door and she said "I was going to give my sissy a hug!"

Saturday we moved to an actual crib! It is a lot bigger than the little newborn "crib." We were told that Briella can now have active time during the day. We brought in a bouncy chair and a mobile for her crib. Night time is going to be strictly business. Just eat, change diaper and back to bed. But during the day we can talk to mom and dad and she stays awake generally for at least an hour. She coos to us. Nothing more I love to hear than her "talk."

Yesterday we were told one of the reasons why Briella is having so much trouble learning how to eat. On top of being so early and having to figure out how to suck, swallow and breathe at the same time, she has a ridge in the top of her mouth that was caused by the tube from when she was on the ventilator. Her palate started forming and growing around the tube. She isn't able to get a good suction. It will fix itself over time. We are meeting with a speech specialist tomorrow who will tell us what we can do to help her.

The only thing left to do before home is take all 55ml every 3 hours by bottle.

Briella is 6lbs 5 ounces. She has now graduated from preemie diapers and is in newborn diapers!!!!!

Please pray that the ROP resolves itself and that Briella stays healthy & infection free.

Wednesday, January 2, 2013

6 pounds!

6lbs and 1 oz tonight! Briella had zero spells today and did well with her bottles today. Not finishing any of them, but not having spells and at least trying!
That is all :)
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Tuesday, January 1, 2013

36 weeks/13 weeks

Haven't updated in a few too many days so where to start?
Lets see, Friday I was able to participate in Briella's first day of N-trainer therapy. She gets it 3 times a day and she is in the group we were hoping for! There is a pacifier on the end of a probe hooked to a computer that sends little pulses of vibration in her mouth to help her with learning to suck, swallow & breathe all together.

Saturday I was bottle feeding Brie in the afternoon. She did an ok job, didn't finish it all so she had the remaining through her feeding tube. While I was holding her, staring at her, she made her choking face where her eyes close hard and I sat her up. I could hear her choking on the milk. Her heart rate dropped and her oxygen level went down to the 30s. She turned completely purple and I could see her eye rolling back in her head. I had Brian jump up and turn the wall oxygen on and grab the bag to put over her as she was crashing fast. The nurse came in at that time and stuck a bulb syringe down her mouth so she would spit out the milk. She then came back up on her numbers. Her flap in her throat had closed to prevent her body from aspirating, but it was preventing her from breathing, too. I stayed decently calm during the event, but afterwards I was really shaken up. Whew, again I thought I was going to watch as they attempted to revive my child. So glad for the nurses here!

Sunday was a good day. She attempted the bottle a couple times and gave a good effort but not finishing any bottles.

Monday, here in Kansas City we got a couple inches of snow. Maybe up to 4". I decided not to risk driving all the way to the hospital with the streets being slick so I stayed home with Aubrey and pouted about not being able to see Brie. Around the evening time, I really got upset. When I'm not running back and forth to the hospital I have too much time to think about things. I REALLY wished I had just gone to the hospital and just stayed the night in the chair next to her bed. Briella also received her 2nd N-trainer therapy session.

Today Briella was moved rooms. We moved from Tulip Lane down to Daisy Drive. It is a smaller room and it doesn't have an actual door that closes like our last one does. It does not have a window either. We do have a curtain that we can pull shut. We were moved because we are now a Level 2 baby instead of a level 3! 3 requiring the most help. So I am happy for this move regardless.

Briella received her synagis shot today. We were supposed to get it right before discharge but there have been a couple babies in the NICU that have come down with RSV so they are protecting all babies born under 32 weeks with this shot. It's a $2100 shot that she will have to have monthly, but a max of 5 times. It will help prevent RSV, and if they contract it, it won't be so bad. RSV is a life threatening battle preemies are hugely at risk for. I am so scared of her getting it when we get home. Our whole family will be in isolation when we get home. Online purchases will become our lifeline with limited trips to the grocery store.

As of last night, Miss Briella is 5 pounds and 15 ounces. So we are guessing we will have a 6lb baby in the next day or so! And I really don't want to jinx anything, but she didn't have a spell all day yesterday and so far not today! She has taken her bottles a decent amount. Not finishing them, but being more coordinated with the suck, swallow, breathe. We are getting ready to try our 3rd bottle of the day! They will now let her try 3x a day!
The doctor came in to talk to us to make sure we have taken our discharge class. He says he predicts she has a couple weeks left. He asked if we were wanting to room in and I said yes. Parents that have been involved in the baby's care for as long as we have don't always have to, but I want that 1 night of being here and just knowing that there is a nurse here while we care for her on our own. Exciting times!!!!!

I think that the N-trainer therapy is helping her!

Please pray that Briella stays infection & RSV free, that her eyes continue to develop and she stays healthy.

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