Saturday, January 22, 2011

Our Little Girl, Our Big Miracle

In general, I do not use the term “Miracle” lightly but I honestly believe Brenna’s life is truly a miracle.  Yesterday she underwent surgery to have a VP shunt installed to drain excess fluid from her head.  This is the 7th surgery Brad and I have endured on our girls (Brenna’s 5th) and I can honestly say it never gets easier.  In fact, this one was the most difficult for me yet.  I held her all night before the surgery and tried to prepare myself for the following day but nothing can prepare you for handing off your wide eyed baby girl to the pre-op nurses in the OR and knowing what awaits her.  After about an hour and a half the surgeons came out; the surgery was a success.  The most ideal place for the shunt to drain is the abdominal cavity and thankfully that is where the doctors were able to put it.  Unfortunately, when Brenna’s stomach was opened up it revealed numerous adhesions as a result of her previous perforated bowel which is not good news, but also not surprising.  The end of the shunt must be placed in an area free of adhesions or it will not function, thankfully the surgeons were able to find one pretty big pocket free of adhesions.  However, should the shunt need to be revised in the near future, it will not be an easy task and may not even be able to go to the stomach.  Please rlay that Brenna’s new shunt will hold out long enough for the adhesions to clear. We are told to anticipate at least 5 shunt revisions in her lifetime, we just pray she doesn’t need one anytime soon.  The next few days will determine whether this shunt is functioning as hoped.

Brenna’s surgery started around 8 and by 1 she was off the ventilator.  Soon after she decided she no longer needed her second IV and proceeded to pull it out on her own rather than wait for the nurses to do so.  By the evening she was back in mommy’s arms and playing and talking. Since the first self-performed IV removal was such a rousing success, Brenna decided to attempt to remove her other IV during the night.  While she was successful in removing this as well, it was short lived and another had to be put in for her fluids.  She is still rather fussy dealing with recovery and an empty belly but overall doing amazingly well. 


As I said above, I try not to downplay true miracles by using the term on a day to day basis but as I had a lot of time yesterday to reflect on these last few months I can honestly say Brenna is a miracle.  We are so very fortunate that given the circumstances surrounding the triplets’ extremely early birth and the complications that can result that Anna and Lucy have done so very well…this is not the norm.  While they had their issues and will likely face at least a few more, we are thankful for what we have.  It has been said that God never gives you more than you can handle (with His help of course) and I am so thankful for Anna and Lucy’s  paths thus far as we were in for a real rollercoaster with Brenna, one that we are probably not done riding yet. 

Brenna’s troubles started early on (about a week after birth) with her perforated bowel.  We knew things were serious when we received a call to hurry back to the hospital after just leaving one night.  We were told she was very sick and it was very obvious from her appearance that she was not doing well.  We were prepared by the NICU staff that it was possible she would not survive this complication.  Her very first surgery was to repair the perforated bowel.  There were 2 options for surgery that night, one to attempt to fix the problem and repair the bowel, the other a temporary fix to attempt to save her in the short term.  Brenna was in such bad shape that the first surgery wasn’t even an option as she would not have survived it.  So, we had to go with the temporary fix and hope she pulled through and stabilized for a later surgery to repair the problem.  Weeks later the doctors were astounded to discover than her bowel had repaired itself and wouldn’t require further surgery.  The gastro surgeon was so amazed with our girl, he had never seen this great a recovery in his long career as a surgeon.  Only later in talking to our NICU nurses did we truly understand how grim the situation was.  We are so grateful for the prayers raised up for Brenna and we know God answered those prayers.

Brenna is such a little trooper; having now endured 5 surgeries, battled IV infiltrations, infections, and undergone too many sample draws and blood transfusions to count and is still such a sweet lovable little girl.  She has many NICU nurses fighting to care for her because she truly is something special, a gift from God, and unlike any other.  Only after the girls were born and named did I take the time to look up the meaning of the names we chose for them.  Lucy means light and she definitely is the attention grabber with her funny expressions and vocal personality.  Annaliese means grace and she is our mild-mannered joyful little girl.  I was initially disappointed at the meaning of Brenna’s name, after the other two girls’ names having such pretty meanings.  Brenna means hill…how dull is that?  At least that is what I first thought.  143 days after her birth and many complications later, I think she has the most perfect name possible for her.  Since day one she has climbed hill after hill put to her and does so with a determination unmatched by anyone I’ve ever met.  As one wise nurse has said “I’m amazed that such a little person can teach us so much.”  

 Brenna is going to be a powerful warrior for God; an example of HIS undying love and faithfulness even in the most desperate of times.  One look at her and you have to know there is a God with the power to overcome all things and while I wish she never would have had to endure all this in her little life I know she will make the best of what she has been given and I pray I will always do the same.  In preparing for this shunt surgery one of the difficult things I’ve had to face is that this will make Brenna visibly different than “normal” babies for quite some time.  Her shunt will be very visible until she has enough hair to cover it.  It breaks my heart that my little girl may have to endure stares and questions that other kids won’t but what I’ve realized these last few days is if she can handle all she has, a few odd glances and inconsiderate questions will be nothing for her.  Still, I wish they weren’t going to happen but I have the utmost faith that Brenna will be just fine.  

I can’t wait for everyone to meet this little girl.  She is unlike any other and I thank God she was given to us. If all goes well, she should be home with us soon.

In His name,

Angie, Brad, Anna, Lucy and Brenna

Tuesday, January 18, 2011

Update 1.18.2011

Hello world, it’s been a while. Now that things have calmed down a little after the holidays, we thought it might be time to try to write again. Life has been busy between appointments and trips to the hospital, washing bottles and changing diapers, but we are managing. Who knew babies were so much work? J
The holidays this year were a little difficult for us. We never thought we would be spending our first Christmas as a family in the NICU, but we were determined to be all together on Christmas morning. We packed up and spent the night in Brenna’s room, all five of us. FYI, it takes a lot of stuff to sleep over somewhere with two babies. We did get a couple of “You’re crazy” looks from some of the nursing staff, but it all worked out. We had fun, despite the circumstances we found ourselves in. Not being able to spend time with family was difficult, but it was in the best interest of Anna and Lucy. Cold and flu season is no time to take a micro-preemie out and about, no matter how well they are doing.
Lucy, Brenna and Anna at Christmas

Home life with two babies; where to begin? Anna and Lucy have been home for just about two months now, and they seem to have adjusted very well to it. It’s hard to believe how fast they are growing.  Both girls are pushing 9lbs and their little faces aren’t so little any more. Just this weekend, we noticed that their newborn clothes weren’t fitting so well anymore, so we had to quick pull tags off some 3 month outfits. Didn’t we just buy these outfits, how can they not fit anymore? We must be doing something right.
Since coming home, Anna has been progressing quickly. She was discharged on a ½ liter of supplemental oxygen. She is now down to 1/64th liter, and will more than likely be off oxygen all together in another couple of weeks. We look forward to upgrading her to the wireless version. No oxygen = no more monitors = no more annoying beeps for no reason. She has also become extremely active during her awake periods, talking, smiling, and tracking objects.  She is definitely a daddy’s girl. It never fails that when she hears Daddy, she’ll squirm, lurch, and crane her neck in every which way to find him. She has her days and nights figured out now, which is nice. When she came home, she was backwards, no doubt in part to some late night play time with some nurses who shall remain nameless.  Anna was also the first to roll over, front to back. She was apparently tired of her tummy at the doctor’s office the other day and rolled over. It caught all of us by surprise, even the doctor. She had been doing her baby pushups for a while, and then BOOM, roll over.  Anna does still have some fluid in her ear canal, so we haven’t been able to check her hearing in her left ear, but we go monthly to see if it has drained yet so we can get her hearing test done to verify everything is ok. But it is a minor detail in the grand scheme of things. She also still has some minor issues with her eyes, but the doctors don’t feel like it’s going to develop into anything they need to act on.
Anna Banana
Lucy has also been making great strides since coming home. She is still our vocal baby, but she talks more, and cries less. She is getting pretty good at focusing on and grabbing objects, and loves the bath tub. Not during bath time, she just likes to sit in the bath tub, but hey, who doesn’t? Lucy also rolled over for the first time last week front to back, and she’s actually almost got back to front down. She’s got the leg kicked over, she just needs to build up the momentum to flip over her shoulder, but it won’t be long. We’ve noticed that Lucy isn’t content lying on the floor any more, she really enjoys sitting up and seeing the world. So curious, so ready to get out there and explore.  Medically, Lucy is pretty much clear of any issues at this point. Her only real concern coming home was her eyes as well, but she has been cleared of any problems, so we are relieved with that outcome.
Lucy mugging for the camera

Now to Brenna; so much has changed with her since our last update. At the time, she had just gotten off a lot of meds and started eating regularly again. We are happy to report that Brenna is doing about as well as she can be at this point.  Her weight is on track with the other girls, almost 9lbs, and she is 22” long. Feeding is going well, most of her feeds are coming via bottle these days. It does seem to wear her out a little, but she’s a little champ and pushes through. Her jaundice is all but gone, and she is off all but a few meds. We did have to deal with a somewhat unexpected surgery to correct an issue with one of her eyes, but she bounced back extremely quickly from that procedure. Thankfully, the procedure corrected the issue, and the doctor’s don’t seem to think it will require anymore medical intervention.

Wireless Brenna before getting tubes changed
Even with all the progress our little Brenna has made, she still has one pretty significant hurdle to clear. Due to some complications of being extremely premature, we have known for a while that Brenna is going to require a shunt to help drain excess fluid from around her brain. With her previous abdominal issues, she hasn’t been medically ready for this procedure until now. Surgery is scheduled for Friday (1/21) morning at 7:30. Assuming all goes well and there are no complications after surgery, the only thing keeping her in the hospital will be learning to eat consistently.
Brenna helping Mommy hold the bottle just right

Daddy and his girls
We have asked for a lot of prayers in the last 4½ months, but this week we are asking again for all you have and maybe a little bit more.  We can finally see the end of the road. There are a lot of unknowns with Brenna, but the one thing we do know is we need her home with us.  Anna and Lucy have thrived at home, and we have no doubt Brenna will do the same, but we have to get her there first. She is our little warrior. We don’t know how she does it, but she does, and we will forever be inspired by her heart and her will. Please keep her in your thoughts this weekend as she takes her last big step towards coming home. Thank you and God bless.

In His name,
Brad, Angie, Anna, Brenna, and Lucy Kamps