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.


  1. Of course Brad read this and gave Claire a kiss from Marley! Haha! It was so great to meet y'all, too. Claire and Marley will definitely be life-long buddies and I hope we can get them together often.

  2. Marlena looks like such a little beauty :) Glad to hear that she's been doing so well. I have several friends with hydro babies who have been taking them to Duke, I'm sure it will help her a lot. I look forward to following your story, and seeing more pictures of you sweet little miracle girl :)