Yesterday I wrote a post in my head about blessing and curse – how the monitor she is attached to is both a blessing in its keeping us and the nurses aware of what’s happening, but also a curse in that it makes me jump every time it starts beeping. That’s especially true at night now that we get to stay in the room with her. But somehow the last couple of days have had a lot of blessing and curse and ups and downs and I’m just trying to make sense of it all, so I think the roller coaster metaphor is the best way to go.
She got moved from the icu to a regular room on Sunday. So the last two nights we’ve stayed in the room with her, enjoying being close to her but also going without the same level of sleep I (guiltily) enjoyed in the Ronald McDonald House. Then yesterday we started bottle feeding her, and today they took the feeding tube out of her nose. Now the only stuff attached to her are the monitors for heart rate/respiration/oxygen and also the port for her central line to get her antibiotics in and blood out for testing.
Today she was moved from intermediary care (one step down from the icu) to the long-term care floor. Each time these changes happen we try to not be anxious about the changes in her level of care, and we know it’s a good sign of her progress that she needs to be less closely attended to by medical staff. Now instead of sharing a nurse with one other patient like in the icu, she shares with a group. Although at the moment I think our pod is fairly empty.
Forgive me if my post feels a bit like a roller coaster. My thoughts and emotions are so jumbled and I just try to get it all out at once. I wanted to back up and thank all of you who wrote comments here and on facebook and sent me private messages of encouragement, especially about the breastfeeding issue. I made the decision the night I wrote my last post to stop pumping (although technically I’ve pumped a few more times to wean down slowly and relieve myself of the pain and pressure). I just needed to give myself permission to do what I was already inclined to do in stopping breastfeeding. Some of you shared your own personal struggles, and to quote one that I particularly appreciated, “Yes, ‘breast is best’ in a vacuum. Insert other variables, and it may not be best.” So true. It’s nice to know I’m not alone in my struggles. And for those of you who apologetically admitted to being “rabid breastfeeding advocates,” please know that the term was not something I would apply to you. I had done some internet searches into group b strep and breastmilk and came across a message board where a woman had posted looking for support about her decision to not breastfeed before her baby was born and was beaten up and called selfish by total strangers hiding behind internet anonymity. Why people do that is beyond me.
Anyway, back to my decision, I made the choice that night and felt at peace about it. I’m glad I made it when I did because the next day they extubated her and we got to hold her for the first time in a week and a half. The physical response in my body almost made me change my mind back, but none of the reasons I had for stopping had changed. I still wanted to be 100% sure of her safety, and I wouldn’t feel safe feeding her in that way again. And for those of you who are wondering if the doctors were blaming me, they weren’t. Not in the least. In fact, the doctors kept reassuring me that they didn’t know if the breastmilk or my skin was the source of the bacteria. It’s possible she passed it to me. And oh, there’s another thing that I’ve been freaking out about – they found the bacteria in the early milk I had pumped and frozen that we brought to the hospital. It scares the hell out of me that the bacteria was present weeks ago, wherever the source was, and that it’s been working on her tiny body in secret for so long.
The doctors talked about the possibility of giving me a round of antibiotics to see if that took care of my carrying this monstrous bug. At the same time there’s not been a lot of studies to see if that prevents re-infection (which is also possible, God help us!). I can’t emotionally face the possibility that I might pass anything back to her, wherever it may have started. And she’s underweight, so to ensure that she is getting exactly what she needs I want to have measurable amounts to give her. I would love to be able to continue breastfeeding in terms of how natural it is and how God designed us that way. But I also know that God has given us the gifts of the modern world (blessings and curses that they are) including formula for moms like me. Believe me, I have thought a lot about how without modern medicine neither Samantha or I would be here now!
When I logged on (to my own computer now, we had my folks bring it in from home once we started to share a room with her) I was feeling rather emotional and depressed. Today was a very hard day. Actually every day is hard at times, but this was particularly bad. Neurology finally came to talk to us about her most recent MRI (which was done five days ago, but whatever, take your time going over things with us). The damage that has been done to her brain by this bacteria is extensive and scary. The doctor who talked to us was compassionate but also frank in terms of what we’re looking at long-term. This was actually the first real conversion we’d had with any doctors about her prognosis beyond the hospital. Because of the damage to her thalamus, her motor skills will be greatly affected as she develops. She may never walk or be able to physically do any of the activities of daily living like dressing or feeding herself. Physical and occupational therapy will be a part of our lives from here on out, along with many specialists who can help with her particular needs. The good news is that the thinking and personality centers of her brain seem to be unscathed so far, although the prospect of the next MRI terrifies me to no end. What that means is that she will know who we are and be able to communicate in some way. She might not be able to talk, depending on her ability to physically do so. But talking is more likely for her since she can take a bottle. The fact that she can breathe on her own and swallow is all encouraging signs, so we’re trying to hold onto that. It’s just hard to know that this sickness has literally eaten away parts of her brain that we can’t get back.
I know God can work miracles, and already has in keeping our little Sammy with us. I know if He wants to, He can restore her brain fully and completely. I also know that more often than not, God does not change the circumstances but changes us and our ability to handle them. Right now I’m caught in between those two, a stone’s throw away from hitting my knees and begging Him to change one or the other. I’ve spent most of the evening in tears, wishing that it was me and not her. I’ve gone through the gamut of emotions, from sorrow over the things she will miss in life to mourning the loss of my own dreams that seem impossible now. I know all of these feelings will continue to circulate over time. I feel guilt over some of the thoughts and feelings I’ve had, some of which are entirely selfish. I may not be able to return to work or do anything more with my life than care for her, and right now I’m having a lot of trouble seeing the gift in being her caretaker. I know if that is where God is calling me, it will be a gift. I keep thinking about the future too, how she will need to be cared for even after we are incapable of doing it (unless God calls her home first, which is also a real possibility and one I’m not prepared to face yet). Will my nieces or their children have to shoulder the responsibility? I know that all of this is getting way ahead of ourselves, but this is where my mind goes.
Travis has become a champ in bottle feeding already. That for me is the hardest part of this whole giving up breastfeeding thing, because Samantha and I had our special bond in feeding that was just ours. Travis has been our rock through this whole experience and has been from day one the lead diaper-changer and burper. I think he’s adjusted to parenting a baby much easier than I have. Now while we girls struggle through re-learning the feeding process (and she looks at me like “seriously, mom, this isn’t how we do this!”) I have felt like I’ve lost my one thing I had figured out. Not that I really had it completely figured out by any means, but it was the one thing she absolutely needed me for. Now I feel like I’m not entirely necessary. And if there was any way I could trade my life for hers, believe me, being expendable would be a welcome relief to me. Now I just feel useless most of the time, particularly when I’m reduced to a blubbering mass of depression and mucus.
I am becoming more and more aware that at some point, maybe when we leave the hospital or possibly before, I will need to see my doctor about depression. Before all of this happened, I had a bout of baby blues that faded over a couple of weeks. I figured I was out of the woods for post-partum depression. Now I’m not so sure. I’m prone to being depressed anyway, and this whole situation has left me feeling so helpless and small. This writing is cathartic in many ways but I don’t think it will be enough to keep my mind from dissolving. The funny thing is that I’ve always highly valued my ability to think and process things mentally – wisdom is one of my spiritual gifts. All of this has really forced me to confront the pride I have about that fact and realize that brain function is not the most important thing in this life. It’s a lesson I’m going to be learning for a while.
Amy Klein Medeiros said:
Oh Steph, the thoughts and questions you’re having are SO understandable; I think any parent can put ourselves in your shoes and imagine having so many of the same thoughts and feelings. Continuing to pray–for miracles, for strength, for a good support system, for a doctor/therapist for you, and for God to provide ALL your needs and for you three to experience His tender mercies, day in and day out.
bethany actually said:
Stephanie, as a non-rabid breastfeeding advocate (better? :-)) I fully and 100% understand your reasons for stopping nursing. I’m sad at the circumstances that led you to this decision, but if I were in your shoes I am not sure I’d be doing it any differently. I don’t know if I ever told you about the challenges we had in breastfeeding Annalie? Because she was a preemie it took us about four months of nursing and pumping and lactation consultants and blah blah blah to really get it established and going…and even then, she had to have a few ounces of formula every day to make sure she was gaining enough weight. Elliora has needed supplementing with formula too, since she was about a month old. So I totally understand being frustrated with your body not doing what it’s “supposed” to do for your baby in some way. I’m glad you are at peace with your decision and that now Travis has the chance to help with Samantha this way!
Also, I wanted to share two things: first, a reader left this comment on my blog post with the update about Sammy: “I don’t usually comment, but…My friend’s daughter had strep B at birth, which developed into meningitis and then she sufferred a stroke. Not exactly the same string of events but the end result of extensive brain damage and poor prognosis was the same. Nearly 1/3 of my friend’s daughter’s brain was dead…fast forward three years, physical therapy, speech therapy and dedicated mother and NO ONE can tell anything ever happened. Baby brains are so plastic and able to reroute and restructure that this miracle can happen. She talks, walks, jumps, sings and is learning her letters. The same little girl the doctors said to prepare for a nonverbal, blind and deaf baby. Babies are amazing and I hope that Samantha will have the same wonderful outcome.”
My piano teacher’s youngest daughters are twins. When they were born, something happened during delivery that caused one of them, Rachel, to be deprived of oxygen for a prolonged period. After she was born they did tests and told her parents that she probably wouldn’t live, but if she did, they couldn’t ever expect her to walk or talk, and she would possibly be deaf and blind. Today Rachel is in her late 20s and while she is developmentally disabled, she graduated from high school and lives in a group home. She sings and plays piano and violin. She reads voraciously and rock-climbs. She’s a loving daughter and sister and beloved aunt. She’s one of the happiest, most loving people I’ve ever met.
You and your faith are so strong! What an inspiration your family is! There is so much wisdom in your words. Please know that you and Travis are being prayed for along with Samantha by thousands of people from all over.
We all struggle to comprehend the events of the last 10 days, and I’m fairly certain probably never will. God doesn’t assure us that we will understand; he just wants us to keep our focus
on him. We love you!!!
debbie oatman said:
Dearest friend, I understand your feelings all too well. We have been where you are, at the cross roads of having her live, being dependent upon us forever and the unknown, the parts that only God knows and you can’t seem to grasp that. Never doubt that you are needed and loved by that little girl – she needs you more than ever. You and Travis will be her advocate, you will be the ones to stand up and say “Don’t tell my child what she can’t do, let her tell you what she can do”. I never thought I had it in me, till a teacher told me my precious little girl couldn’t read because she was mentally retarded. I didn’t know I had it in me, but I was in her face so fast it surprised me. That same little girl is in college now, she is president of two organizations, editor of her newspaper and will be interviewing with the Supreme Court in San Francisco this Friday for an internship. We were told she may never walk, or talk, she probably wouldn’t read past a 2nd grade level, if that. Whatever Sammy’s capabilities are they will be her accomplishments, gifts from God. She will be amazing, just like her Mommy and Daddy. She will be all that God has in store for her. If she never walks, she will roll through life and make her mark, if she doesn’t talk, she will sign, or type her thoughts, and if by God’s Grace and Love, she is able to walk and talk and do all the things they say she may not do, she will be God’s spokesman. Something that was so beautiful to me was when Christiana was in Special Ed classes we would dance with our children, some of them were unable to move, but they were in their wheel chairs or the lifts and they danced, they loved it and the parents loved it. It was truly beautiful to see their faces enjoying “the dance of the day”. You are so much needed in Sammy’s life, she will always look up to you and love you. We love you and admire you as well. Continue to be blessed. All our love, Mark, Debbie and Christiana (the dancing queen).
Praying and praying and praying.
I just want to speak a minute to the comment about feeling insignificant. So so so many studies have shown how significant a mother is in a child’s life – regardless of whether the child is a preemie, breastfed, has special needs, etc. One thing that absolutely floors me sometimes is how much comfort I can give my kids just by my presence. Sometimes my kisses cure booboos. Sometimes my touch on Addie’s shoulder gives her the courage she needs to try something new. Sometimes my lap is the reassurance Eli needs to relax in a new environment. I know there are times when you feel so helpless but in Samantha’s life, you will be a comfort just by being her mom. I have no doubts that God hears your prayers with such love and empathy -and I am also certain that He knows how significant you are and will be to Samantha.
kelly schrecengost said:
i know i havn’t sent or said much but i’ve been reading your posts and most of my responses have been sent to fb on travis’s wall. i want you to know i am praying for you all and that we all wish we knew what to say or do to help. guess thats why we stay quiet most of the time but we’re here and we miss you guys esp when we go to church. if you ever want to talk feel free to contact me. i’m sure things will fall into place it’s just hard when you don’t know where that place is or how to prepare for it. i’m sure this is where the footprints poem falls into place. you are all strong and amazing people and depression will subside anyone in your posision would be hurting. God bless you and your family…wish i could say or do more to help!
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