Friday, February 25, 2011

Easter Cuties

The look of adoration he has when I let him hold his little sister (no matter how angry she might be in the picture :) ! just melts my heart. He has such unconditional love for her and I am so thankful for that.

Wednesday, February 23, 2011

Where My Mind Was Then

I went back and found all of my posts on the website. It's interesting to read how I was feeling as we went through everything.

August 24, 2010   (This was four days after diagnosis.)

My husband and I are 21 weeks pregnant with our second child. We were ecstatic to learn that we were having a girl four days ago. About 20 minutes after leaving the ultrasound room, we were pulled aside and told by a doctor that there were some concerns about the baby and that we needed to go have a level 2 ultrasound done. There the doctor said that she was 90% sure our daughter has what she wrote down as 'massive ventriculomegaly.' I could see something flapping on the monitor, and she told me it was the choroid plexus hanging down into the fluid filled around. She told me that I had an option to terminate the pregnancy. I declined. I believe it is only God's decision to take her out of this world. I agreed to an amniocentesis after speaking with a genetic counselor. She mentioned absolutely nothing about the measurements of ventricles, nor did I ever hear the word 'hydrocephalus' come out of her mouth. After doing some research, I called her back that night and wanted to know very badly the measurements of the ventricles. She told me the left was 23mm and she said the right was somewhere around the same. I have a regular OB appointment on Sept. 3. On Sept. 7 I am being told to have an in depth ultrasound of her heart done, to make sure everything is fine there. They said she looked fine everywhere else, but often when there's a problem with the brain, there is also a problem with the heart. So they want this done to make sure everything looks normal. On Sept. 21 I am having an ultrasound with a specialist. My husband and I, and most of my family, are completely devastated by this news. My questions right now are,.. is her case comparable to these babies who turn out to be happy children? What is her chance of survival? I am feeling so lost, in such despair.

September 7, 2010

I had a fetal echo done yesterday so it is looking like this is isolated so far because everything with her heart looks great! She still kicking a lot and growing fast. I still have no clue how her VM is progressing. This is what I want to know the most. But they are waiting an entire month to look at her brain again from the day of diagnosis!! Shouldn't they be monitoring this much closer than a month later to watch what it's doing? A quick reminder to those who didn't catch my first post; my daughter was diagnosed with massive vm at 20 weeks u/s with 23mm vents. Amnio results returned normal chromosome structure and no infection.

September 21, 2010

I had the first ultrasound since diagnosis today. My baby girl's left vent measured in at 24 mm which is about the same it was a month ago, but the right vent has grown to 36 mm, whereas it was symmetrical. The doctor told me today that there's still a chance that she has holoprosencephaly, which a fetal MRI can hopefully determine if she has or not. The doctor told me today that it isn't the size of the ventricles that determines the neurological outcome of the baby, but the underlying cause. If she does have holoprosencephaly, then the outcome is very grim. If she does not have it, and the problem is caused by a blockage of the aqueduct, then there is a lot more hope. I am 25 weeks along now, and her head circumference is as if I were 30 weeks. I've been keeping the best positive mental attitude possible, but today is putting a strain on my state of mind. She still kicks me lots, which lets me know she is going to be a little fighter. We are two strong girls, we just have to hang in there.

October 7, 2010

We had our fetal MRI today. The radiologist and his colleagues all agree on two things. One being that she does not have holoprosencephaly. The second being that her ventriculomegaly is caused by aqueductal stenosis. The neonatologist I spoke with appeared to be very hopeful. This is the best news we could have received today. :)

November 10, 2010

Alright, I am 32 weeks pregnant now. To give a quick update, my baby girl was diagnosed with ventriculomegaly at our 20 wk u/s. I had another u/s today and her measurements are now really, really big and scary. Her left vent is 28 mm and the right one is now 63 mm. Her head circumference is 39 cm. and she is head down. The u/s technician said she weighs around 6 lbs. The plan is to do a c-section at 37 weeks, but with these new measurements I got today...... I want her out now. </span><span>They didn't tell me what her head circumference meant today, but I looked it up with I got home. A normal, term newborn baby's head circumference is between 33 cm. and 38 cm. So she is 32 weeks old in gestational age right now, and her head is technically that of a full term baby. I feel that the longer her hydrocephalus goes untreated, the higher the chance for her to have irreversible brain damage. I spoke with one of my genetic counselors today and she is discussing the u/s results with our MFM doctor to determine if a c-section would be best sooner than later.

December 11, 2010

Marlena Nichole Musgrave was born at 5:18 PM on December 7th. She weighed 7 lbs 13 oz and was 19 1/2 inches long with a head circumference of 42 cm. She received a VP programmable shunt about an hour shy of her being a day old. She is currently doing well. She is on room air, cries when she's not happy, has great eye movement control. We are currently working on getting her feedings going well. She is taking a bottle, but still is getting the hang of it. She is perfect to me. Her little misshapen head has a couple spots of bone protruding it seems like those weren't there before surgery and her head is a bit mushy in the back now which is a good sign I think.

Monday, February 7, 2011

Looking Back

A lot has happened since I first created this blog. I actually had forgot that I created it. It was interesting to reread my first blog entry. Marlena is now two months old and she's doing well at home! She was born at CMC in Charlotte, NC on Dec. 7th, 2010. She was 19 inches long and weighed 7 lbs 13 oz. after an amniocentesis to test her lung maturity came back good. She had to be resuscitated because she had so much amniotic fluid in her mouth. Her APGAR score was a 4 at the one minute mark, but quickly went up to a 9 at the five minute mark. The time we spent in the NICU felt more like a year, even though it was only around two weeks. Her head circumference stayed at around 42 cm her entire stay. Marlena had to get a ventriculoperitoneal shunt placed soon after her birth. She was 23 hours old when they took her to surgery. A shunt is tube that is placed into the ventricles of her brain and tracked under her skin to her abdominal area to reroute the fluid that is causing all of the compression. While Marley was recovering, we worked on her bottle feeds. She caught on pretty quickly, although the nurses there at the NICU weren't sure that Josh and I could get her to take every bottle. After we pressured them to let us go home, as the only thing holding us back from doing so was their suspicion, we didn't have any feeding issues whatsoever once we actually did get home on Dec. 19th.

Vincent absolutely adores his little sister. I was expecting lots of jealousy issues, but I was pleasantly surprised. He kisses her, sings to her, helps me burp her, hugs her, rubs her "ouchy" on her head. He's such a loving child. I could not ask for more.

We have since been to Duke University Hospital to have an experimental treatment done for Marlena. We saved her cord blood to have this procedure done. It costs around $14,000 per treatment and we will know if insurance covers it pretty soon; as it is experimental we can't get a pre-approval. We can have it done up to two more times. The idea is that the cord blood cells help repair any brain damage that has been done to Marley's precious little head. Even though we will never know if it has helped her, we feel content in knowing we have exhausted every single resource that could push her even a millimeter closer to her greatest potential.  While we were there at Duke, my mother and I had the pleasure of meeting another couple who was going through the same things Josh and I were, at the same exact time. It was a great experience and I do believe Marley Bug has made a life long friend in Miss Claire Bear. Brad and Amy, you are amazing people. I am so happy we got to meet. If you ever read this, be sure to give Claire a kiss from us. <3

At Marlena's last neurosurgery follow up, the nurse practitioner wasn't too happy that Marley's head circumference hasn't plateaued  yet. It was about 44 1/2 cm last week, however, her ventricles are going down in size. We know this from the cranial ultrasound that was done before the appointment. The nurse practitioner decided to turn Marley's pressure from 100 to 90. This will make the fluid flow faster. When I asked her if it could cause a shunt malfuntion, she explained how it could, and said the short answer: "Yes." I'm feeling a bit anxious about it, and watching her closely. We will see her actual neurosurgeon, Dr. McLanahan, in about five weeks, on March 15th. I hope we get good news. He's a wonderful, but desensitized man. I chalk it up to the fact if you're cutting on babies' brains, you probably need to detach yourself from humanity at some level.

Tomorrow morning, we'll have our second visit from her early intervention teacher, Miss Kim. She's a wonderful lady. We even sat at my dining room table last time and chatted for a while after the session was over. I'm really glad she and I "click." She will be helping me with physical therapy appointments for Marley as well.  I am very concerned about Marley's development. I can't sit here and be oblivious to it to just sugar coat that she may likely have delays. I pray with all my heart that she won't have any at all. We'll take one day at a time, and each milestone she makes will be like a touchdown at the Super Bowl. Right now, I'm just focusing on what she can do. We will support her to the fullest degree. Delays or not, however concerned I may be, she will always be perfect in who she is; my child: God's child.

I am so very content with how things are going. Marlena is gaining weight, sleeping well, and pooping/peeing. She's currently doing everything she should, except for her head control. She has a 10-11 month old's head with her 2 month old body, so it may take a while before she gains control. She's beautiful and I love her so much. She's such a blessing and I have only but the Lord to thank.