5:45pm Nora is back on Floor 7 Central in her room number 45.
She is out of anesthesia and stable!
Jason is reading Calvin and Hobbes to Kali while laying on a mat here in Nora’s room. Mom Benner is giving the medical report to Dad Myers. Nora is finally resting peacefully after a hard day and I’m trying to gather my thoughts and emotions together to send the news to those of you journeying with us from a distance.
This Thursday Jason and I will commemorate our 9th wedding anniversary (I say commemorate since we have already mutually decided that we are going to celebrate our 10th and hopefully will feel more celebratory next year at this time). I mention that because at times like this it becomes even clearer to me how much of a team Jason and I are and how our different gifts (and challenges) come out in this setting. Jason has been at Nora’s side almost 24/7 since we have come to the hospital. He has mastered tube feeding in no time. He also engages the doctors intelligently and asks such good questions – I often look at him after they leave with a look of disbelief and ask him how in the world he knows all of this! For that reason, he will likely take over with this update when we get to that section.
I am all feelings in this place, and today have also felt like I have a water fountain coming out of my eyes at times. I have a hard time absorbing lots of “medicalese” when our baby is crying and crying after not having food for 7 plus hours. When the 20th person asked if we had any more questions about the heart catherization at about 12:30pm today, when she was supposed to be taken around 10am, I felt like throwing something or running out of the hospital and not stopping for a very very very long time.
It still feels like a bit of a nightmare that I would love to wake up from. When I look at Nora laying on her little bed hooked up to oxygen, monitors, and an IV, it is hard to believe she is the same little one that carted around with me for 2 months to work, free of all those contraptions and relatively content and happy (even on days with multiple meetings and having her naps and playtime disrupted constantly). But this is where this unpredictable journey has led us.
Since we last wrote, Kali has joined us and while this has complicated our life, it has also been a breath of fresh air to have her creative, imaginative, playful spirit in our midst. Without Grandma and Grandpa Benner here (who arrived just hours after my Mom brought Kali to be with us), it would be another story. They have cared for her during most of today and it has been a lifesaver for us and special for Kali. We are so grateful that they were able to come on short notice and that Mom (a physician by training and trade) is here to ask the questions we wouldn’t know to ask. We’ve also been eating much better since they arrived!
Last night when I was getting Kali ready for bed I realized how much our little girl is listening to every word we utter and is absorbing the seriousness of the situation even if I can’t coax words out of her when I want to hear how she is doing. We were cuddling together and I talked with her a little about the day ahead with Nora’s procedure. I told her that Nora might not be happy in the morning since she wouldn’t be able to eat for awhile. Kali quickly added, “She’ll be starving.” Only moments later through tears she said, “She’s going to starve to death.” In my moments of anguish over Nora having to have food withheld from her I have used the term “starve,” not because I think it is an accurate description of what she is experiencing but because it matches more my feelings regarding the situation. Kali’s presence will cause me to pause before uttering the depth of my feelings at times.
For those of you wanting the medical update on Nora you are probably wondering when that is coming. From Jason:
“This is the briefest of medical updates on Nora. More detail can follow or be obtained by simply picking up the phone and calling us, or rather me, since I gravitate towards and retain more easily the medical information and processes. Nora has been diagnosed with pulmonary hypertension, or elevated blood pressure in the lungs. This can be the result of a PDA (a longish story), a mild form of which Nora was known to have prior to this, but which was assumed to have self-corrected. Low oxygen levels in recent days led to a cardiac evaluation, which revealed it had not self-corrected after all. A heart catherization was done today to get more information about relative blood pressures in her heart and lungs, and while they were in there they found it to be worthwhile to fix the PDA. It was assumed that that would help but not solve the problem entirely. They were right. Also while they were in there they released some medications to see if she would respond, to help determine future treatment options. She did, which is good. I could inundate you all with details, but the long and short of it is that she will need oxygen and pulmonary blood pressure meds for some time to come if not for all of her life. She will also be expected to need 1.5 times the calories of a normal person her size so she can grow extra lung capacity. More to come. Gotta go do a feeding.”
Back to Janelle: Some of what is unfolding, while shocking and disheartening and scary, does make sense. There were days that I wondered what Nora could possibly be doing with the milk she was consuming. For 2 months I have tried to feed her around the clock without one gained ounce to show for it. It seems obvious now that her body has been working extra hard!!
The coming days will involve many consultations with doctors to try to determine next steps and the best treatment for Nora. We’ll keep you posted as we are able. Thanks for the emails and calls and expressions of care that many of you have been sending our way. Janelle
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