Wednesday, December 30, 2009

Hanging out at Children's

Yup-we're still here. M is doing well, considering. She got a Hickman cath placed to receive her antibiotics and draw blood from. No more pokes makes her and mama very happy girls. The word on the street is that we'll be here at least two weeks if not closer to three. I guess that's pretty average for a kiddo in her position. I won't lie, it's tough to feel like a good wife and mom when your children are over an hour apart. I've been here at the hospital since Saturday afternoon, with a break yesterday to run home and spend some time with E. Kevin is going to start spending some time up here this weekend and next week. I've noticed that there are very few families that actually stay with their children here. I found it quite odd, but I don't, of course, know their circumstances. I guess I feel like M was abandoned once and spent almost 4 months alone in a hospital I can't imagine doing it to her again. That said, our plan is to have someone here with her all the time.

I should answer the question that several people have eluded to, although not been brave enough to pose to me directly. Do we regret adopting M? The answer is absolutely, without a doubt, NO! We did not enter into this adoption blindly or naively. We knew we could be in for a very long, difficult road. Did we hope that she would have an easy course? For sure, doesn't every parent hope that for their children? We had great hopes that she would not need multiple shunt revisions, that she would not develop an infection, that she would continue to grow and thrive and make it through infancy unscathed. The fact that she hasn't, doesn't change the fact that she is our daughter and we love her unconditionally. Truthfully, I don't know how we're going to do it. I don't know how we'll manage our time with her, with E, with each other. I don't know how we'll manage time away from work and I definitely don't know how we're going to manage financially. There really aren't any answers right now and I can't spend every waking moment searching for them. Fact is, my baby is sick and she didn't ask to be; but I asked to be her Mommy. I will be there for her regardless of what obstacles are put in our way.

So, please continue to pray for our girl and our whole family. Pray that we all have the strength and resolve to weather this storm.

Saturday, December 26, 2009

Take 5....for real this time

So, the suitcase has been packed and ready for over a week - I figured by being ready for another hospitalization we'd ward off the evil spirits. Sadly, I was wrong this time. M has meningitis - likely due to a shunt infection. She was just taken to the OR where they will remove her complete shunt system and place an external shunt for the time being. We will be here in the PICU for about 5 days if all goes well. Then, a new shunt will need to be placed. I hope and pray this is the last round of surgeries for a while. My girlie needs a break! Please pray for M and for the surgeons working on her. I will update when I can.

Thursday, December 24, 2009

Merry Christmas and Happy Birthday

We have so much to be thankful for this Christmas. We have been unbelievably blessed this past year. E has been healthy and growing like crazy. He's turning into quite the little man. Not a day goes by that he doesn't amaze me with something he says or does. M was brought into our hearts, lives and family. Her adoption was a complete unexpected blessing. She has brought even more joy and love to our home. Five years ago I never would've imagined that I would enjoy all the noise and chaos as much as I do. Kevin and I are still securely employed in jobs we actually like - a true miracle in this economy! K, despite her circumstances, continues to grow and appears to be doing quite well. The Christmas dress I bought last year for her to wear this year still hangs in the closet with tags on. Her crib stands empty. Today, she is 18 months old - one and a half years have passed without her knowing the love of a family. We pray that the coming year will finally bring us all together. We will never give up the hope that she will come home to us. She is a part of our lives and always will be, no matter what the future brings.

Merry Christmas to you all! I pray that everyone has a safe and happy holiday. And yes, there will be Christmas pictures posted soon - I promise!!

Wednesday, December 23, 2009

Music to my ears

M had her neurosurgery follow up yesterday. We saw our favorite NP who, as usual, spent a lot of time thoroughly examining M and chatting with me. For the very first time since we first found out about M and starting talking to doctors, I heard the words I've been waiting to hear: "There is no PVL (click here to learn more) noted on her scans at this time." Doctors have been very careful, as they should be, not to give guarantees or false hope. I completely and totally understand that it is impossible to know the extent of the damage to M's brain from her bleeds and hydrocephalus for years to come. However, to hear that there is no PVL visualized on her scans is absolute music to my ears! M continues to have a leak around her shunt which causes fluid build-up on the back of her head. It swells and then goes down throughout the day. She is, for the most part, happy and comfortable. She is eating well (VERY well) and alert. It seems that her ventricles are equilibrating and it is just going to take some time for her body to adjust to this new shunt system. We will continue to watch her closely and say healing prayers.

Saturday, December 19, 2009

Take 5.........

It's been a long week here at the Fenskes. On Wednesday, I awoke to find the back of M's head swelling yet again. In usual fashion, the pediatric neurosurgery clinic worked her in for an evaluation. Unfortunately, our primary neurosurgeon is out of the country for a month so we saw one of the two NPs. I had met one of them prior to M's last surgery and really liked her a lot. To my disappointment, she was not the one we saw. The neurosurgeon covering did not have time to see us (and when he finally did many hours later, I was not real impressed), so the resident took care of us for the most part. He is actually really good - I had my doubts last time, but after getting to know him a little better, I really like him and trust him a lot. After tapping M's shunt and reviewing the MRI, it was decided she would be admitted to the hospital for monitoring and possible surgery Thursday morning. I had a really difficult time believing that my baby was going to have her FIFTH brain surgery in four months!! An xray shunt series and abdominal ultrasound revealed no obvious problems with any part of the shunt system. This was good news, however, we still didn't have an answer for her swelling and irritability. It was a looooooong night as M did nothing but cry frantically. The resident saw us again in the morning and it was decided that surgery would not be happening for now. They were hesitant to cut into her yet again without absolute proof of a shunt problem, especially since her sutures haven't even dissolved from the last surgery. The current theory is that she has a leak around the shunt catheter and that it is ever so slightly possible it will seal itself off. So, we are home, watching and waiting....hoping and praying.

Wednesday, December 2, 2009

My Brave, Little Soldier

Now that we've had time to take a breath, I thought I'd provide a better update. When I woke M up Monday morning, I noticed a large swelling at the back of her head. It wasn't there at 2 a.m. and was quite big at 6 a.m. Knowing that she had been having some fluid accumulation in her fourth ventricle I pretty much figured surgery was going to be our course. I was able to see our neurosurgeon at 10:00 a.m. and after an MRI to confirm the shunt failure, we were admitted to the hospital by about 12:30 p.m. Surgery was scheduled for 3:00. After an hour and half of nurses and the venous access people trying to start an IV, the OR decided they couldn't wait any longer and we were taken to pre-op. M was taken into surgery around 3:30. At 5:00 a nurse came in to give me an update. I assumed she was coming to tell me surgery was finished (it was supposed to take about an hour and a half). She was coming to tell me that they were just now getting started. It took 1 1/2 hours for the anesthesiologists to get her IV started. She ended up with a femoral line. The actual surgery took a little longer than originally thought, but our doc was extremely pleased with the outcome. He decided to remove M's original shunt and replace it with a different type. He also changed the position a bit. Hopefully this will be her last surgery for a long while. Four brain surgeries in four months is just too much for anyone! We stayed in the hospital overnight and after M recovered from her respiratory problems, she rested comfortably. We were discharged late yesterday afternoon and she continues to do well at home. We'll be hiding out for the next week or so letting her rest and heal. Risk of infection is of course our biggest concern at this time. Thanks again for the prayers and well wishes - it means a lot to us!

Tuesday, December 1, 2009


Sorry for not posting sooner. M did great with her surgery. It was much longer than expected, mostly due to the fact that they could not get her IV started down in the OR. She did well, however, experiencing only some transient respiratory problems last night. We are home and trying to settle in. Thank you to everyone who called, emailed, and stopped by. It sure is great to know that so many people are praying for your child.