Let me first start by saying that the past 6 weeks have been some of the hardest and most trying of my life. Not only did I have an extremely difficult delivery and recovery with Ella, but I have also had to deal with the general frustrations of being a first time mom all while the plumbing in my darling yet extremely old house decided to completely break. (we had the pipe that connects to the main line under the house break) Just when I seriously thought that things couldn't possibly get any more difficult for us I got a scary call from Ella's pediatrician. So here is what is going on...
Last Monday I took Ella in to the pediatrician because she was 6 weeks old and her umbilical cord still had not fallen off. No big deal really. The Dr. put some stuff on it to freeze it off and we were on our way. The cord would fall off in a couple of days and all would be good. Or so I thought. On Wednesday the pediatrician called me back and said that when she saw Ella's cord something wasn't sitting right with her. She said that the cord didn't look like anything that she had ever seen before. Not wanting to freak me out at the time she decided to do a little research. After looking into it further she contacted a pediatric immunologist at Primary Children's. The immunologist recommended seeing Ella as soon as possible because she thought that Ella may have what is called Leukocyte Adhesion Deficiency. I had never heard of this before so the pediatrician recommended that I look it up online to get more familiar with it. When I looked it up my heart just sank. Basically this condition is an extremely rare condition where the body is unable to fight off bacteria. This could be why her cord isn't falling off. There have only been 400 reported cases in the world. But the part that scared me the most was that all of the infants who have had this were normal healthy babies. They were not born premature, they were on track developmentally, and had no problems with weight gain or eating. But, more than 75% of those babies died before they reached their first birthday. There is no medication for the condition and the only treatments are stem cell and bone marrow transplants. I know that we still have to do the blood work to know for sure but just the thought is making me sick. It's all I can think about. The immunologist office said that they couldn't get Ella in until May 4th but we are doing everything that we can to get her in sooner. I can't wait a month to know if this is what she has or not.
I know that we all have our trials but I honestly feel like I'm going to have a complete meltdown. I know that many of you think that I may have some postpartum depression and at this point I would say that you are probably right. With everything that is going on right now I don't see how I couldn't. We were finally able to get Ella on some what of a sleep schedule and now I'm not sleeping because I'm so worried about everything else. It's just been so much at once.
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Est. May 5, 2005
4 comments:
Jessica ~ Sherry Hancock's sister-in-law again. Don't do this alone. You've got way too much on your plate and I am worried about you even though I don't know you. When my oldest child, a girl, was born, there were complications and she lost oxygen resulting in permanent brain injury. She is 13-years-old now and lives full time in a care center due to her extreme mental disabilities.
I could not figure out why I felt worse at 6 weeks postpartum than I did immediately after a difficult C-section birth. By 4 months I was nearly a basket case. My general practitioner saw what was going on right away and put me on antidepressants. They literally saved my life as well as my daughter's. I was nearly in the fetal position with depression and anxiety and could not meet her needs properly.
You had a traumatic birth and now a possible traumatic diagnosis. I've been there. I understand the emotions and mental exhaustion. You are not admitting defeat by taking meds. You are showing that you have enough courage to face the difficulty head on an manage it.
You have a wonderfully supportive husband like I did (and still do!). Use him as an ally in this battle. Don't wait until you are truly dysfunctional. This stuff is huge for a first-time mom. My heart aches for your pain. I know it too well... Please get help.
Much love from a stranger ~ TLC
Jess, my prayers are with you, and I pray it turns out different then what they think. I would be fighting to get her in sooner then later. There is no reason that it should take that long if they think its that. Can't her regular doctor do the test to see? Please let me know if I can do anything. You are in my prayers.
Hey, you know I am here for you always. I am praying that Ella is ok and she will grow up to be a strong and perfect girl! I will do anything for you and please let me know if you need anything!!! Love you girl and please know I'm here. XOXO
This is scary news! I am so sorry you're stressed and feeling discouraged but the odds ARE on your side. I will be praying for you and little Ella and hope everything turns out. We love you!
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