140

That's how many days of her 190 day life M has spend in either the NICU or PICU. There is currently no end in sight. Her numbers, you know the famous "numbers", are all over the board and she is in no state to head to the OR Tuesday for a new shunt. Our theory is that she will still head to the OR, but for another ventricle flush. We're probably looking at another couple weeks. If we could get a decent, consistent nurse, things would be A-okay, but we've had some real winners (insert sarcasm here) lately! Thankfully our neurosurgeon is due back from his week long conference (which happened to be in the Caymans) tomorrow. I have no doubt he'll have some answers and a fabulous plan in place. :)

Hospital Life

A quick update

You'd think I'd have tons of spare time to blog sitting around a hospital every other day, but it seems we are busier than ever.

M's surgery last Tuesday went well. She had a ventriculostomy and an external ventricular drain placed. Her CSF is draining well and her infection appears to be under control. There were concerns after her surgery that her ventricles were loculated (walled off) again, so she had a dye study on Thursday. It showed, thankfully, that all of her ventricles are communicating at this time. That means when her new shunt is placed it "should" be relatively uncomplicated. She is tolerating hospitalization as well as ever. She is the most happy, content baby I have ever met!

We have made the decision to hold off on having her new shunt placed until our neurosurgeon returns from the conference he is attending. We had the option of having the other neurosurgeon do it later next week, but my mommy gut says to wait. Tentatively her surgery (number 8) is scheduled for Feb 2nd. She will receive a VA shunt this time with the distal part of the tubing running to her heart instead of her abdomen. Hopefully it will provide better results and we can actually start counting weeks and perhaps even months of shunt success instead of days.

E, my tough, sweet, boy is doing okay with all of this. It has worn on him for sure. Not having both of us at home every day/night has been difficult. He has regressed a bit to being very insecure and needing to have us in constant sight. He is also sleeping with us - something he has never done. As long as we keep him informed of what's happening and who's going to be where each day, he seems to be comfortable.

Kevin and I are holding up okay. We're exhausted but managing. We both have had "those days" although we try to have them opposite each other. It would definitely not be good for anyone to have both of us melt down on the same day! :)

My main struggle right now is internal - I feel so guilty and at times sad and overwhelmed. Guilty when I'm not with my daughter in the PICU, guilty when I'm not with my son at home, sad that I only see my husband for a few minutes every few days, guilty that I'm not giving 110% at work every day, guilty that my house is not in tip-top shape, and definitely overwhelmed at the thought of trying to figure out how we're going to pay our bills this month. I pride myself on being a great mom, a great wife, a great friend and a great employee. Right now I don't feel like any of those and that frustrates me to no end. I know this is merely a blip in our life. I know that years from now we'll look back and it won't seem so significant. Truth is, we're getting by and I know we will come out okay - it's just a matter of time.

Lucky Number 7

7th surgery scheduled for 7:30 this morning. I guess it's not lucky that M is having her seventh surgery today, but hopefully after this one we are one away from being done for a long, long time! Just trying to find the sunshine in all of this............

Things That Don't Suck

Alright, thank you to all who indulged me in my pity party last night. I'm over it and ready to move on. It sucks that M has had to go through so much in her short life and that our family is once again separated. So, to lift my spirits, I thought I'd start out our 2-3 week hospital stretch with a little game of "Things That Don't Suck". Here's how it works: Take into account your current life situation, ignore all the things you might be inclined to complain about and list ten things in your life right now that DON'T suck. If you're reading, consider yourself tagged and post your answers to your blog. I'll start:

1. My Husband - my wonderful, amazing, strong and supportive husband who lets me have my freak outs, understands my insanity (or at least pretends to) and loves me no matter what.

2. My Kiddos - my silly, crazy son who can always make me laugh and shows me the beauty and excitement in everything around us; and my beautiful, resilient daughter who faces each obstacle with grace and shows me every day what tough really is.

3. Support - we have had such an outpouring of support from our family and friends. It's so comforting to know that there are so many people poised and ready to help us out.

4. My job - so far, they have been extremely supportive and understanding of my need to have time off.

5. Our doctors - we have some of the finest doctors in the nation. I have complete faith in the care M is receiving and at a time like this, that is a huge weight off my shoulders.

6. American Family Children's Hospital - I've said it before, this is a phenomenal facility with incredible staff that we are blessed to have access to.

7. Our Insurance - we all complain about it, we all hate to pay for it, but without it, we would be financially devastated. We have some excellent coverage and for that, I am so grateful.

8. The Internet - may sound shallow, but without it I would not have access to the virtual family and friends I've come to depend on these last few years.

9. Living in the US - if there's something you want to complain about, watch 2 minutes of Haiti coverage, then get over it and be thankful for what we have here!

10. Diet Coke and Hospital Potatoes - need I say more?

Speechless..........

We're back in the PICU, where we will remain for ANOTHER 2-3 weeks. We had five whole days at home. I have absolutely nothing to say right now.

Surgery, Diet Coke and yes.....more potatoes

M went to surgery at about 8:30 this morning. I went down to the cafeteria to get the super giant soda - nothing beats fountain Diet Coke! I decided I should grab some food and you guessed it - I ended up with Cheesy potatoes. There has to be some sort of potato addiction support group out there.

I digress.

M's surgeon called shortly after she went down and said that after reviewing her scans he did not feel the planned left sided shunt placement would be best for her. He didn't want to put it back on the right because that's where the infection and bulk of the inflammation was and she's had 5 other surgeries on that side. By putting on the left we risked one or more of the ventricles not draining well and ending up right back in surgery. By putting it on the right, we have a little higher risk of a repeat infection or blockage from the remaining inflammation. Ultimately, long term, having on the right is the best option, so that's the plan.

It appears she will probably come back to the PICU after surgery to finish out her IV antibiotics. If all goes well we should go home Saturday night. Apparently, the other floors of the hospital are filling up fast.

So, we wait and pray that our little fighter continues to fight and that we'll all be home together again this weekend.

Step away from the potatoes

If I have to be stuck in a hospital, this is a pretty darn good one to be stuck in. They have a killer cafeteria, which is really more like a food court. It's crazy expensive, but after 10 days here I'm pretty sure I've tried everything. There's only one problem......they have the best potatoes and desserts! I'm not really sure how many times I've had mashed potatoes and gravy or cheesy potatoes and I know I've had at least one gormet dessert each day. We have to go home soon or I'm going to weigh 300 pounds!

M is slated for surgery tomorrow morning. If all goes perfectly, she'll be discharged after her antibiotic course is completed on Saturday. Keep your fingers crossed for us.

Pictures

I'm home today for a couple more hours. E is napping so I thought instead of yet another picture-less post, I'd give you a little sampling of our holiday. M continues to maintain. She's happy and comfortable, eating well, tolerating her medications. We're hoping for surgery next week if things continue to go well.

Happy New Year Everyone!

Best buddies (until Cash demolished the gingerbread train).

The gingerbread train about 30 minutes before it was demolished by Cash.

M wasn't having any part of Santa. E asked for.....letters and numbers!

Yes, she always looks this surprised!

Christmas Eve 2009.

Day 1 - before the Hickman.

That's my girl - always making the best of a difficult situation.

Have you ever seen such an angelic face?
My crazy kiddos!

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.

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.

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!!

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.

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.

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!

Home

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.

Surgery

I am posting from the Children's Hospital Surgery waiting area. Sweet baby M had to have an emergency shunt replacement this afternoon. She is in surgery now and I'm asking for prayers and healing thoughts to be sent out for her. I will update as soon as I am able.

Thank you!

Doctors...doctors....and more doctors

Hi all!

Boy you'd sure think I'd have tons of free time to blog what with not working an all. This little girl really keeps me running! Between trying to keep the house as clean and germ-free as possible and getting her to all of her doctor appointments, there's not time for much else.

Overall, M is doing pretty well. Her sleep has improved some, however, she is battling a nasty cold so that complicates things a bit. I looked back and there have only been 4 days since we've been home that we've not gone to a doctor appointment. We're getting her established and getting to know all the doctors and specialists. So far, I love them all!! We are so blessed to have access to some of the finest medical professionals and facilities in the nation.

E is doing great, too. He is learning, although not happily at times, how to share Mommy's and Daddy's attention. He is the best helper I could've ever asked for. He is always asking me what I need and running to get diapers, wipes, the "booger sucker", toys, blankets, you name it. He's not super cuddly with M yet, which during the cold and flu season is probably a good thing. (Oh - and no, it was not his birthday or anything. I made him a cake and we had a "Big Brother Party").

While I'm pretty worn out at the end....who am I kidding....the beginning, middle and end of the day, I'm finding it so incredibly rewarding to be a mom to two beautiful children. I've been subject several times over the last two weeks to the "you are such a saint" comment and I just want to say - we adopted the children that chose us. Yes, they have special needs, yes they were born into unfortunate circumstances. We do not claim to be saints, nor do we feel like our lives are any different than anyone else's lives with two children. The only difference I see is that we manage our time a little differently, and have more appointments to manage and resources to employ. The thing is, it's all we know. So, thank you, I know you mean well, but we really are just a couple of people who wanted children. We have been blessed beyond imagination with the two we have and look forward to adding K to our family also.

Alright, I know why you really came here and for your patience, you will be rewarded. Here's some of my favorites from this week:

The Princess

Our little miracle......

I guess it's time to spill the beans......

A couple of weeks ago, we found out about a little girl born in Louisiana. We spent days pouring over her medical records and searching our hearts to decide if she was our daughter. She was....and now, she is!

Baby M was born at just over 25 weeks - 1 pounds 7 ounces. She suffered Respiratory Distress Syndrome and a Grade III-IV Intraventricular hemorrhage. Subsequently, she developed hydrocephalus. She was on a vent for a little over a month. In her second week of life, she was transferred to the NICU at Children's Hospital in New Orleans where her care was managed for the next 14 weeks.

Little M had a temporary reservoir placed to drain her excess cerebrospinal fluid while she grew and became stronger. When she was big enough, she had a permanent ventriculoperitoneal shunt placed. The shunt functioned well and despite one minor revision about 2 weeks ago and a couple adjustments, she has not encountered any difficulties.

M did great while in the NICU and was a favorite of many of her nurses. This is evidenced by the fact that she really does not tolerate being put down......EVER! :) She continued to grow and thrive and was discharged to us on Monday, November 2nd.

It is unsure what the future holds for M with regard to her physical and mental development. She will certainly have some obstacles to overcome secondary to her prematurity, hemorrhage and hydrocephalus. The good news is that she has amazed all of her doctors and right now at just under 40 weeks gestational age, she is doing everything that a child her age should be doing.

So, here were are, in our hotel in Metairie, LA, hanging with our girl. We're praying that ICPC goes through tomorrow and we can return home on Friday. There's a little boy at home missing his mommy and daddy and a mommy and daddy in LA missing their little boy something fierce! I cannot wait to scoop him up in my arms again!It's a little scary to be travelling with a preemie who is so susceptible to colds and infections, but she is one tough girl!

Our camera and computer have decided not to play nice this week so unfortunately, I only have one picture to offer right now. There will be many, many more after we return home and get settled back in.

Without further adieu......