Tuesday, December 6, 2011

It feels like we're waiting for Christmas morning...


... BUT EVEN BETTER...

As many of you know, we were suddenly and unexpectedly given the GRRRRRREAT and overwhelming news that we WILL be getting Brontë home by Christmas and most likely by the end of this week... She is currently in observation, and has had a few test which we are waiting for results on... but the NICU staff members are shooting for Wednesday (THIS WEDNESDAY!)... so as long as her test results come back fine, she continues to gain weight at a steady pace, and she has no events (apnea or bradycardia) we'll be able to have her home by this time tomorrow! I CAN'T BELIEVE IT!

Last I posted, she was still getting fed mostly through a feeding tube... now, just days later she is taking ALL her feedings orally and the tube is GONE! That was the last thing that needed to happen before talking about discharging her, and it happened FAST! (It's like she knew that was her ticket home)

Being that Brontë was so premature, she will require specific care tailored to her needs, so Nick and I are having to take some classes in preparation to care for her at home, and in the event of an emergency (which we'll hopefully never have to use), but on top of that there is just so much regular baby prep stuff to do to get ready for her to come home...there doesn't seem to be enough hours in the days.

Initially, we were stressed with everything that needed to happen in such a short amount of time... but there have been so many people that have volunteered to help us in more ways than I could have ever thought to ask, and THAT is making this time much, MUCH more enjoyable for Nick and I... We have truly been blessed above and beyond by amazing people all around us... God has not only been working in Brontë, but also through her, and I am blown away to see God moving the body of Christ in response to her.

Today we celebrate her 5th week birthday/"would have been" 34th week of gestation... and Nick and I are lying in bed trying to get some much needed sleep, but how can we?! We just are awe struck with God's sovereignty and goodness! He's had this in His plan all along, and His reasoning, which has begun to unfold already, will continue to do so throughout her life and ours.

Friday, December 2, 2011

Growing like a weed!




Hey everyone, Emily here...
Brontë is doing really well the last few days. She has been moved yet again to another portion of the NICU , she is now in a room with only 7 other babies, all of whom are doing well and getting close to reaching their goals to go home... SO THIS IS VERY EXCITING THAT WE ARE THERE NOW TOO! We're still not sure when she will be able to come home, but it ensures us that we are definitely on track and that it may be sooner rather than later... We just celebrated her 1 month birthday and Nick and I sang Happy Birthday to her in the NICU... just as we did on her actual day of birth. 
I hate to use the phrase "supposed to" because God always knew and planned for her to come when she did, but it is hard to believe that we are still 7 weeks away from when she was "supposed to" be here... with that said, the NICU staff always tells parents to plan to have their babies home around their due date... give or take a a couple weeks... However, if babies are really thriving it may be realistic to have them come home a month before their due date... so if Brontë's homecoming truly is coming sooner rather than later it maybe just over 2 weeks from now! 
The real determining factor of when she will be able to come home now is how well, and how fast, she catches on to bottle feeds and nursing. As of now, her doctor has ordered 1 bottle feeding per 12 hour shift, and 1 dry breast feeding session each 12 hour shift to practice nursing. Normally, the suck - swallow - breathe coordination doesn't set in until closer to full term, but they begin to learn the skill on average at 34 weeks gestation... She is equivalent to 33 weeks currently, and they started her with this practice last week... she is progressively getting better with her bottle feeds, and the nurse is now working on getting orders from the doctor to increase her bottle feeds to twice per 12 hour shift and also to start true breast feeding possibly this weekend! 
Brontë weighed in last night at 4 lbs 2.5 oz and has been growing like a weed... her little preemie clothes that were falling off of her just 2 weeks ago are now leaning more towards being too tight! (though we can probably make due with them for another week at least) She has been gaining about an ounce every day... sometimes more, sometimes less. 
It is amazing to think of the progress she has made in this first precious month! As many of you know she has been hooked up to nearly every contraption, and on almost every medication that a preemie could be on, but now, only a month later... She is off EVERYTHING with the exception of her feeding tube!
As far as prayer requests goes please pray... 
  1. That Brontë continues to develop her feeding skills... specifically breast feeding as we will soon be trying it for real... 
     2. Her brain bleed is still present. There have been no changes (good or bad) since they found it... They are still saying that as long as it’s not getting bigger then it’s just a matter of time before the blood is reabsorbed... please be praying that it doesn’t get any worse, and that it begins to go away.
     3. Nick and I are both sick right now, and as such, are not allowed to visit the NICU until we are symptom free... pray this comes quickly.
     4. That Nick and I are able to get ready for Brontë's homecoming... there is still so much to do and SO much we need to get... all the essentials like a car seat, a crib mattress, diapers etc, etc. (A clear indication we didn't have the expected 3rd trimester prep time. LOL) If any of you feel like helping us with this, we would appreciate it. You can check out our registries at both BuyBuyBaby and Babies"R"Us
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Tuesday, November 22, 2011

Brontë's Little Steps are Adding Up!

Thank you all for the continued prayers... We got to practice "dry" breast feeding tonight (the first step toward breast feeding), and she weighed in at 3 lbs 7 oz! woot woot! So proud of our little sweetie, and so thankful for all of those who have been faithful to keep her in your prayers... I tell her about you all everyday!


Brontë's big update for tonight is that she is having a "room air trial" they took her off her nasal cannula, and they're testing her out to see if she can handle breathing like a big girl... they tried this last week, and she made it for 5 hours, but then had a rapid decline which took her days to recover from...as for today, she's been on room air and no cannula for about 9 hours now and doing well... please pray she continues to do well through the night... THANK YOU :)

Thursday, November 10, 2011

Ups and Downs, but all-in-all heading in the right direction.

Another scan was done on Brontë's head on Tuesday which revealed the brain bleed is still occurring.  It hasn't gotten worse, but it is still present.  Her oxygen has been weaned down and her food intake has increased to 9mls (.3oz).  She has also put on some weight.  Her lowest weight was 2lbs 6oz and is now up to 2lbs 14oz.  They will try bottle feeding in approximately 2 weeks.

Today Brontë was completely off of her nasal canulla for 5 hours.  Tuckered the poor little thing out, so they put her back on it.  Today she also started physical therapy.  She was put on a stretch and exercise program to help with tightness in her joints caused by being in Emily so long after her water broke.

Sunday, November 6, 2011

Daddy's Girl

Today Nick was able to hold Brontë for the first time.  He longs for the day when he can spend hours holding her.

Brontë is now off of CPAP and on a canula breathing apparatus.  She seems much more comfortable now and was upgraded to 2 ml feedings.  Her bilirubin is still not where they want them to be, so Brontë spends the most of her day under the blue lights.

Emily and Nick would like send a HUGE thank you out to though who have donated money to help with medical expenses.  It is such a blessing to them.  Thank you for continually keeping this family in your prayers.  For where two or more are gathered in His name, there He is in the midst of them. - Matthew 18:20

Saturday, November 5, 2011

A Day of BLESSINGS!

It was a big day for the Graebner family.  Emily was able to hold her child for the first time today!  What a joyous moment this was!  Emily was able to hold her for 2 hours inside her shirt to do skin-to-skin time.  Brontë also had her first meal today and tolerated it well (a whole 1ml!).

Emily was also discharged from the hospital today.  The Graebners received more joyous news today when they learned they had been accepted into the Ronald McDonald house in order to stay close to baby Brontë.

Even though this family was able to celebrate many encouraging milestones, please keep them in your prayers.  The bleeding in Brontë's brain is still a concern as well as the infection in her lungs.  It's because of all your prayers that this family was able to physically reunite and the Graebners thank you all from the bottom of their hearts!

Thursday, November 3, 2011

One Step Forward, One Step Back

From Emily: "It's been a big day for her... lots of improvements but also some set backs.  They did another head ultrasound and found a brain bleed.  It's not a big bleed and the doctors are optimistic that it will resolve itself, but pray it doesn't get worse.  If it does it's likely to do some brain damage.  Her hematocrit levels were a lot lower too so they had to give her a blood transfusion.  She seems to be tolerating it well, but it's a bit scary.  She was very responsive today and feisty.  I got to hear her cry and everyone was saying she's got a great cry for being so young and tiny.  Normally they're so weak you can't hear them.  The doctors said she was tough, feisty, and quite the fighter."