I discovered a few days ago that there are computers available for us to use on the 8th floor of this hospital (the PICU is on the 9th floor). So today I came down to write and pour out some of the overflow of my heart.
For those of you who don’t know – I doubt there’s anyone reading this who doesn’t, but just to make sure – our daughter Samantha is in the hospital on life support. She got sick last week and to make a long story short, she is struggling with a bacterial infection that is in her brain. We’re learning what lots of “itis” terms mean, but basically it all boils down to inflamation. It’s terrifying. She’s seven weeks old as of yesterday, and we’re looking at (best case scenario) long term neurological problems.
I have so many emotions flooding my mind. Anger that this could happen to our tiny little girl. Anger at God, anger at myself. Guilt quickly follows – what she’s struggling with is most common in premature babies. She was delivered early because of my high blood pressure. Oh, and they think she might have picked up the bacteria from nursing since they found it in the milk I pumped. They aren’t sure about that one, but I’m dumbfounded that something we thought was good (breastfeeding) might have been the very thing to expose her to this toxin. Now, maybe it wasn’t that, maybe she passed it to me. But regardless it’s very hard for me to imagine feeling safe enough to ever nurse her again. I’m really struggling right now with that decision. Should I continue to breastfeed? First of all, how do I know for sure that it’s safe? Second, with the stress and the situation, my schedule of pumping has been less than ideal, and I know I’ve lost volume. What will it take to get it back, and do I even have the energy to try? (Please, if you are reading this and are a rabid breastfeeding advocate, refrain from comment. I am already under emotional turmoil and I don’t need anyone giving me a guilt trip. I’m giving myself enough of those these days).
I also feel guilty for not being in the room enough. I just get so tired and try to get more sleep in. Or I go someplace else to eat. I find myself hating being in the room and hating being away from it. And when I’m in her room I feel guilty for not doing enough. But I can’t pick her up and standing next to the bed gets exhausting. So then I sit and feel bad for just sitting there. I try to talk to her or sing, but it gets frustrating when we see little response from her. All I can really touch is the top of her head. And listen to the beeps of monitors. Thankfully she rarely sets off alarms on hers and when she does it’s usually due to her moving and having a probe slip out of place.
I am exhausted beyond anything I ever thought possible. Before she went into the hospital I thought I was tired. Ha! Now I’m doing less than I was at home for her and yet being more emotionally drained by all of it.
Last week I was horrified at the possibility of them doing a lumbar puncture on my little baby. Now she’s had two, and two MRI’s, and two EEG’s. Plus countless blood draws, a couple of transfusions, and more medicine than I ever imagined they could give to an infant. She’s got brain damage, seizures, and so many other things that just terrify me.
I keep wishing I could trade places with her – why isn’t it me in that hospital bed? I spent the entire pregnancy trying to release all of my fears for her life into God’s hands. I prayed for her constantly but ultimately learned to trust Him to care for her. Now I’m being asked by Him to do that again, and I haven’t been able to do it yet. I feel like I’m Abraham tying my child to the altar, sacrificing her to God. I keep begging God to show me where the ram is to spare her from this agony.
Last week was Good Friday, when my parents arrived at the hospital shortly after the first MRI which filled us with dread. I told my dad I’m tired of identifying with how Mary felt on Good Friday. I want to know how she felt on Easter. I don’t want us to be the parents who show everyone what faith is in a crisis. I want Samantha to show God’s miraculous healing hand through her recovery!
I know we don’t get to choose how God uses us. I just keep thinking about the dreams I had for her life – they weren’t anything crazy. I just wanted her to have friends, play, read, go to school, get married, have children. I don’t know what if any of those things will be available to her now. She may have slight delays developmentally. Or she may never progress beyond the state she’s in now. The doctor reminds us that her movement and reactions are all good signs. But then I’m haunted by the knowledge that this infection may not yet be under control in her brain, that things could continue to get worse instead of better.
I used to get so frustrated getting up for middle-of-the-night feedings. Now I’d give anything to rewind the clock and have that time back. It is so unfair to me that because of this infection she won’t have the life she otherwise could have. Somehow I think I could have handled it better if she had been born with the brain damage instead of it coming after. I keep thinking about the folks with developmental disabilities that I worked with in college and I wonder if she will be like some of them. Will she need life-long care? Will she ever talk or walk? All of these are questions that won’t be answered for some time, maybe years down the road.
Travis keeps reminding me that it’s ok to stop breastfeeding. It’s ok to get sleep and rest when I need to. I even feel guilty sitting here away from her to type this. He tries to remind me to have hope. I just feel the cloud of depression sinking over me. I wish she didn’t have to suffer, and I’m so afraid that after all of this is said and done she will still die.
Out of this, I can see two good things that have given me strength. The first is the amazing community of saints surrounding us. Facebook has become a prayer chain for us, and we also have a caring bridge for Samantha (caringbridge.org/visit/samanthapittock). I’m overwhelmed some days by the prayer support that has come from some very unexpected places, from total strangers to broken relationships. The other thing is my husband. Ever since Samantha was born I find myself loving him in a way I never thought possible, loving him as the father God called him to be. He has been my rock through this entire ordeal, supporting me even when I am at my worst, and what’s more, holding his tongue even when I’ve spoken in frustration and anger. The two of us have always struggled with speaking our minds a bit too freely with each other (as in, we argue easily. Imagine that when we’re both first-borns). But since we’ve been here Travis has been patient with me at times when I really did not deserve it. This is the only way I know how to thank him for it.
I need to get back upstairs. We have been waiting all day for them to take out Samantha’s breathing tube but she needs to be more awake. She’s been very sleepy today and I’m trying to believe the doctors when they tell me it’s due to the sedation she had for the MRI last night, that it’s not a sign things are getting worse. Please pray for us, and especially for her. I want to believe God has a miracle in store, but I also know that His ways aren’t our ways. That’s the part that is so hard for me to take right now.
Steph – my heart aches for you so much. I wish I could take the pain and push it all away and make her better. I still continue to think of and pray for all of you often during her sickness. I pray for a miracle, knowing that He can provide it; but, mostly I pray for strength for you no matter what knowing that He WILL provide it. The mothering blog I follow had a quote one day that I don’t remember the exact words of, but the gist was that God doesn’t give us enough strength to last a life time. He gives us enough strength to last that day and then renews it each day based on what is needed for the day. He will never let us run out – even though it feels like we are running on empty. I love you.
Brenda hooker said:
Stephanie Pittock. I am glad you took some time to pour your heart out here. I won’t comment on all the things I would like to because I would be too long but. You have a list here. You need a sharpie. Because. Of all the things on your list. You take that sharpie and cross off breast-feeding off your worry list. I am a high stress person. I cannot even begin to tell you my experience at even trying to breast feed but I cam tell you this. She will not suffer because of your lack of doing so. Steph, lots of people physically can’t do it and others mentally for one reason or another. I lift up this child in prayer and for you. Parson me for being so direct, bit bind those babies up. Stop it and take care of the more pressing issues. Neither of my kids were breast fed and for little Sam, that is a small thing in her world. Love you. You are important too and you just might not need this pressure. That is my two cents.
Jim Riddle said:
Well, you know me well enough to know what I’m gonna say, Stephanie. You have over-analyzed. So, what if the bacteria DID come from nursing? It would have come from somewhere else if Satan intended it to and if God allowed it. I gave up second guessing God. What I think should happen doesn’t and what shouldn’t happen does. He is always with us and will never forsake us. All we have to do is pray, not think, not beat ourselves up, not ask why – just love Him and realize He loves us.
bethany actually said:
As somewhat of a rabid breastfeeding advocate, I am here to tell you do NOT stress about it, do NOT let yourself feel guilty if you need or choose to stop now. You have enough to worry about already! The breastfeeding you did manage in the first weeks of her life is fantastic, giving Sammy a boost in immunity and helping her grow. No matter how you feed her, the point is that you love her and are doing the absolute best you can for her. Period. Don’t let anyone tell you different or make you feel guilty, including yourself. 🙂
You guys have been so much on my heart these past days, Steph. I will continue to pray for you! Love you all.
You don’t know me but I heard about your little girl Samantha and will be praying for her especially but for you two as well.
Amy Klein Medeiros said:
Oh, Stephanie … I’m glad you had a chance to pour out your thoughts. As a fellow writer by nature, I know how important that can be at a time when so many thoughts are swirling around in your brain. Process in a way that’s helpful for you.
My heart just aches so much for you and Travis and your beautiful baby girl. I will keep praying, and asking others to pray. I hate so much that you are going through this, and I know that our God of all comfort, who has compassion on those who fear him, weeps with you, even as he works through this according to his unfathomable purposes.
bethany actually said:
I’ve been thinking about it, and I wanted to say that I have trouble believing that you could have infected Sammy in the first place. Breastmilk contains living infection-fighting cells called leukocytes that exist only in breastmilk. Did you pump the milk that they tested in sterile conditions? Is it possible you could have had the bacteria on your hands and contaminated the bottle or pump parts? And if Sammy passed the bacteria on to you, then your body would have created antibodies for it and passed them along to her in your milk.
I really am not telling you this because I’m trying to convince you to keep nursing. I’m telling you these things because I don’t want you to feel guilty about nursing your baby. In feeding her milk from your body you were doing what God designed mothers to do for their babies, what mothers have done since the beginning of time. You didn’t do anything wrong or harmful.
I just quickly googled “group b strep passed through breastmilk” and found a whole page full of links saying that Group B Strep is NOT passed via breastmilk. So please let that worry go! You did NOT get Sammy sick. 🙂
Oh friend, I really wish I would have booked that trip to Houston! Thank you for writing…you answered so many questions I wanted to ask but didn’t know how. I can’t even begin to express how sad I am that your amazing little family has to go through this incredibly stressful, frightening, infuriating, and sad ordeal. I pray for you every time I think of you. I’m praying for God to help relieve you of your guilt and anger. Lay it down, Stephanie…even if you have to do it a hundred times a day…He so wants to carry those burdens for you! I’m praying for God to bring you comfort and strength. I’m praying for Him to grant small miracles everyday so you can see Him at work. I pray for the ultimate miracle of complete healing because I KNOW He can do it! I pray that you feel His love and protection and trust that it’s there even when you don’t feel it. Like Jess, I wish I could take all of this away from you and let you rewind the clocks to last week when Sam was still healthy and you were hating the middle of the night feedings. Please give yourself permission to take care of yourself…that’s the best parenting you can do for Sam right now. I’m here for you anytime…I’m just a phone call, text, or email away. I love you, Steph.
Karen Ferguson said:
Dear Stephanie: You don’t know me, but I’m a friend of Kim Dailey’s on Facebook. Ever since I heard about your little one, I have been praying for all of you and extra hard for little Samantha. Miracles do happen, and I am praying that you get yours. That she will get well and thrive and that whatever damage sustained will be minimal. Please know that Samantha and your family are in our thoughts, prayers and hearts daily.
Our most loving Lord Jesus, Good Shepherd of the sheep, you gather the lambs in your arms and carry them in your bosom: We commend to your loving care this child. Relieve her pain, guard her from all danger, restore to her your gifts of gladness and strength, and raise this child up to a life of service to you. Hear us, we pray, in your name we pray. Amen.
And they were bringing children to him that he might touch them, and the disciples rebuked them. But when Jesus saw it, he was indignant and said to them, “Let the children come to me; do not hinder them, for to such belongs the kingdom of God. Truly, I say to you, whoever does not receive the kingdom of God like a child shall not enter it.” And he took them in his arms and blessed them, laying his hands on them.
(Mark 10:13-16 ESV)
WIth prayers and love,
The Ferguson Family
London, Ontario, Canada
Denielle Beaudet said:
Words cannot express the way my whole entire heart goes out to you and Travis, as well as your little girl. In no way can I relate but I know a parents love for their child and I will pray everyday for you little girl. It is very hard to keep your faith in a time like this. Please know that we are all here and praying that it all gets better for you. Hang in there!
Denielle Beaudet said:
I forgot to mention that you don’t know me either but through facebook I saw your blog and had to comment!
Bonnie Wilson said:
Hi, You don’t know me, but I first heard about your little girl on Easter from Pastor Jim. My heart breaks for you right now. My best advice for you is to take it one day at a time and please, please take care of yourself too. The doctors and nurses are there to take care of Samantha now. You need to be strong and healthy for her when she recovers and comes home. I will keep all of you in my prayers. I am a speech and language pathologist and can tell you that I have seen some amazing recoveries in both children and adults who have suffered brain damage from both accidents and illnesses. Please try not to think too much about the long term right now as far as the brain damage. Let’s get her stable and then take the next step. I know it is so easy to ask why such bad things happen to such good people, especially innocent little children. Please know that many people care and are praying for all of you. My cousin and his wife had triplets that were born at 28 weeks and went through many ups and downs with those kids. They were all in ICU for almost a year and had many surgeries and events. They kissed 2 of them good bye several times. That was 7 years ago and they are all in first grade and quite normal. They were certainly miracle babies. I hope this gives you some HOPE and comfort. Take care, Bonnie
Another of the, “you don’t know me” tribe. I’m a friend of Bethany’s & wanted to just stop by & let you know that your family is in my heart. Also wanted to echo Bethany’s thoughts about breastfeeding. It sounds so unlikely that you gave this to her. Please let yourself off the hook for that. And as a rabid breastfeeding advocate, I believe you are doing everything in your power for your baby, if breastfeeding has to be sacrificed, then so be it. Surviving this… it’s hard enough. If you have to let go of breastfeeding to do so, then let go. Anyone who doesn’t understand doesn’t really get it anyway.
My thoughts are with you all.
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