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August 24, 2010 at 9:36 pm | Posted in hydrops, NICU | 6 CommentsI was not happy to be home. I could not drive myself to the NICU to see Jake. I could not go to my grandmother’s funeral. Sadly, my grandmother had passed away that Friday evening around dinner time. I would not have gone to the funeral even if I was physically able to – I could not leave Jake.
Evan would drive me to go see Jake. I would pump breast milk and bring it to the NICU to be stored in this giant top security refrigerator. Jake could not drink the milk but I was pumping it and storing it for when he could. We would label each bottle with all of my medications (the medication to get the fluid out of my lungs, the pain medication and I am sure a bunch of other medications I have forgotten).
I would try to stay as long as I could. Evan would often bring me home to rest and then go back to the hospital. The day of my grandmother’s funeral I did not feel well enough to go to see Jake. Five years later, I still regret not seeing him that day. A few of my cousins, who were also unable to go to the funeral, came over to our house to visit with me that morning.
The NICU doctors would give us a report in the mid morning. If we were not in the NICU at the time the doctors would call us. The doctors were even able to begin to reduce some of the medications and treatments they needed to give to Jake to aid him in his fight and keep him going.
As the days went on, the doctors were able to further reduce the medications and treatments needed to keep Jake alive. At the same time, they started to look for causes for the “hydrops” — the medical condition which caused the fluid build-up in his abdomen and the swelling in his body.
Unfortunately, finding the cause could be something like finding a needle in a haystack. Often, the best method they could use was to try to eliminate possibilities. In many cases of nonimmune hydrops, the doctors never are able to find the cause. As long as it went away, we didn’t care. Over the first week, the doctors were able to eliminate many possible causes for the hydrops, but many remained, and some could not be tested for until Jake was stronger and doing some activities that he could not yet handle (such as feeding). The doctors were able to remove some of the fluid which reduced the problems with Jake’s breathing and blood pressure. Distressingly, the fluid returned over the following few days after it had been removed.
We tried to take things day by day and we remained hopeful but realistic. We continued to sing and read to Jake. We were cautiously optimistic.
Visit with Jake
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A Mourning Mom 
I think you’re terrific, and I am so glad you are working here to tell your story.
Comment by Daphne— August 24, 2010 #
I am so proud of you. You and Evan are in my thoughts, especially so over the next few days. It takes a tremendous amount of courage to get through this senselessness. That you are choosing to open and face such poignant and personal memories takes not only courage, but Grace.
You are an incredibly special person, mother, wife, sister, daughter, friend…thank you for sharing this journey…I can only guess at how truly difficult it is. I hope you find peace and healing, all of you.
Comment by Lori— August 24, 2010 #
Lanie, I am glad that you’ve started this blog. I love you very much, and hope that you can find some comfort in sharing your story.
Comment by Meredith— August 24, 2010 #
Lanie, your courage in sharing all of this is amazing. It at helps me understand more all that you went through and are still going through. Although my heart just breaks all over again for you and Evan, I am so glad you are willing to share it.
Comment by Valerie— August 24, 2010 #
Lanie,
Think of you — walking with you on this journey.
Comment by Patty— August 25, 2010 #
Dearest Lanie,
As another mom who went through 2 and a half months of breastmilk pumping and days/nights in the NICU, I strongly empathize with what you’ve written. I so wish that you had been able to take Jake home, and that he had flourished. That you had to bear a second loss is still unfathomable to me. Writing is a great mode of healing, and I’m so thankful to be one of your readers.
Much, much love, Karen
Comment by Karen— August 25, 2010 #