Louise

We are home!! Last night was the first night that Louise has slept peacefully since her surgery. It was also the first night that I have slept peacefully since hearing that haunting word...Craniosynostosis.

The surgery went well, but it almost didn't happen. Two hours after we handed our baby to the nurse at the doors of the operating room, they called to let us know that they were going to attempt "IV access" one more time before calling off the surgery. If that happened, they would send her to PICU to start the lines and reattempt surgery in a day or two.

God must have known that I was holding on to my composure (not to mention my sanity) by a thread, because the nurse was finally able to get all 3 IV access lines that they needed. Poor little Louise looks like she has been in a wrestling match with a porcupine! She has stick marks from the top of her head to the bottom of her feet. In a later explanation, the nurse told us that it was because she spent so much time in the NICU and her veins were used so much then. I'm not sure if I buy that explanation or not. All I know is that I would have given my right arm to have "our" nurses from SRHS NICU with Louise during surgery.

Other than that (clearly bothered mama), surgery went very well. Dr. Troup and Dr. Debrux are simply amazing Surgeons. What they can do through a 2" incision is mind blowing. The doctors seem fairly confident that this will be her only surgery, but unfortunately we will not know if it is really successful for 5 to 6 months. We'll be doing lots of praying, and we hope that you will too : ) !!!

The day after surgery was tough on everyone, especially Louise. She was running a fever and having a hard time holding down any milk. I was thinking that were going to be in the hospital for awhile. I did a lot of talking with God that day. Then, true to form, Louise decided to bounce back. The next day I woke up to a sweet baby quietly playing with her toys in her bed. Astonished, I walked over and asked "Weezie girl, are we feeling better today?". She flashed me a big smile and I knew everything was going to be OK. The difference in Louise from Wednesday to Thursday was SHOCKING! Prayers answered!

We are now waiting on the swelling to go down before starting the next leg of this journey....helmet therapy. She will be the cutest helmet wearing baby in the world. One of my coping mechanisms through this whole ordeal has been helmet design. I've been cooking up how I'm going to make this the most fabulous, blinged out, cutest piece of equipment to ever grace the head of a child. Pretty soon, all the kids will begging their parents for a "magic hat just like Louise!"

I know I've said this before, but Louise is such an awesome baby. She has been through more in a short 9 months than most of us will go through in a lifetime. When Ben and I named her, we thought we were simply naming our baby a name that was meaningful for our families and beautiful to our ears. However, we have since learned that the meaning of the name Louise is "strong warrior." Clearly a meaning that we feel that she exemplifies and has brought Ben and I comfort during some of our harder days with her. Her middle name is Grace and that is exactly how she faces life...with grace. Even when life throws her a curve ball she handles everything with such grace.

I'm the mama. I am supposed to be teaching my children how to navigate through this crazy thing we call life. However, I do believe, that this little lady is teaching me the lessons. I have learned so much about importance of strength while facing the unknown and the beauty of everyday grace by simply watching her story unfold. Louise Grace Boland I am so proud to be your mom!!!!!!!

Prepping for surgery

Feet! The toy you can never lose.




Daddy and his baby girl

Louise got lots of attention the day of surgery. Junebug and Daddy Jay came along for support.

Looking good! Ben and I had to "dress out" because they let us walk Louise back to the operating room.

Resting peacefully (day 2 post op)

Smiling girl!

Up and Playing!!!!

She loved the Caterpillar Ben and I got her.

Ready to go home!!! Both of us were in bad need of a good night's rest and a shower.

Not to mention we couldn't wait to see Reece and Charlie!! Thanks so much to everyone for all of the love, prayers, and support throughout this whole ordeal!!!!

Louise's Surgery

Hi everyone it's Ben. Lucy asked me to do a short blog post to update everyone on the surgery while she and Louise are still at the hospital. The surgery went as well as anyone could have hoped for! The CT scan this morning showed that indeed Dr. Troup and Dr. Debrux removed the amount of bone that they were shooting for, which is great news. Sorry that I only have the two pictures as you can see, but the camera is still at the hospital. As of today, Louise is still a little puny, and has a good bit of swelling and bruising around the incision, but we were assured that this was to be expected. She has a fever, which is also to be expected, but they decided to keep her in PICU tonight as well to keep a good eye on her. Most likely, she will be home tomorrow or Friday and will need as much rest as she can get. We are so thrilled that the surgery went so well and proud of our little Weesie. Thanks for all the prayers and concern. Lucy will post a much better update I'm sure when she gets home and settled in!!

Mommy getting Weesie prepped for Surgery

Sweet Louise resting right after the procedure. We couldn't believe how small the incision was. She is much more swollen today than shown here.

Another Hill for our Mountain Climber

Just when we were thinking that our sweet babies were out of the woods....we've hit another hurdle.

Louise had her monthly visit with Dr. Troup to monitor her hydrocephalous. He measures her head growth and checks her soft spot to make sure sure she is still safely accommodating for the extra fluid on her brain. When he walked in he became immediately alarmed with the growth of the right side of her head. In the past, we have thought the asymmetry in Louise's head was a simple issue of molding that we would deal with in the future by positioning or the use of a helmet...no big deal.
Dr. Troup explained that the rapid growth on one side of her head could suggest that 1 or more of the growth plates (separated by cranial sutures) on her skull have grown together. The growth plates on the head of an infant play a very important role in development and skull growth due to the rapid growth of the brain during the 1st year of life. The abnormal growth of the right side of Louise's head suggested that the growth plates on the left side had fused and it was her brain choosing the path of least resistance.

Unfortunately, a CT scan revealed that this was indeed the case with our sweet Louise. The condition is called Craniosynostosis and it's NOT related to prematurity or hydrocephalous. It is worrisome that the hydrocephalous puts pressure on the brain internally and craniosynostosis puts an external pressure on the brain.
Traditional treatment is a gruesome surgery that involves making an incision from ear to ear, total or subtotal removal of the skull followed by reshaping and replacing the skull with added hardware. Pretty Scary!
There is a newer and less invasive approach that can be performed on babies younger than 6 months old. It involves drilling a small hole and taking out a quarter inch wide strip of skull from her soft spot to her ear. Post surgery, she will wear a helmet to assist with correcting head shape. This video explains in 30 secs what it took Dr. Troup an hour to explain to me.

Louise is 9 months old, because she was born 3 months premature (putting her at a corrected age of 6 months) Dr. Troup (neurosurgeon) and Dr. DeBux (cranio facial surgeon) have agreed to try the lesser invasive procedure 1st. Louise is borderline too old for this procedure to work and our biggest prayer going into this is that it does.

Surgery is planned for Tuesday and will be done in Greenville. The cards that Louise has been dealt are not easy. She has triumphed over odds that have been stacked against her since day 1. She over came being born severely premature. She breathes normally with a lung that collapsed 4 times. She is developing appropriately, despite a bilateral grade III brain bleed at birth. She has learned to accomidate for the extra fluid on her brain (hydrocephalous) WITHOUT a shunt. This is just another hill for our lil mountain climber.

Ben and I can only pray for the strength that Louise has. As a parent, this is not easy to watch unfold. We don't understand why Louise has taken such a beating in her first 9 months of life. The stress is not easy on a young marriage not to mention we have 2 more babies to care for. My tears have dried up and I'm ready to be the loudest and proudest cheerleader has I watch my daughter conquer yet another battle.