Friday Update

So on Wednesday, he took 5 ounces total. Yesterday he did 9. Today so far he’s done 5 1/2, with one feeding left for the day.

Oh, this week has been hell…I ended up crying in front of the Early Intervention PT and Speech Pathologist, crying for the Early Intervention Social Worker, and especially crying in front of the cardiologist (of the inverted commas fame). This is a lot of crying, even for me.

All of these people gave me pep talks, saying how strong I am, how its unbelievable that we’ve made it this far, what a great mom I am, etc, etc.

I don’t feel strong. I don’t feel like a good mom. I don’t think I’ve ever been so frustrated in my life. And its so hard to feel all this frustration about this situation and Emmett’s problems and not feel frustrated with him.

The cardiologist told us this week and next would be hell. He was SO right. I feel like such a failure, that I can’t even get my child to eat enough to maintain his weight and hydration status. And I feel like Emmett hates me. Or at least really doesn’t care for me. And that’s apart from the attachment problems on my side that I’m trying to deal with.

Oh, y’all, this is just so HARD. I am tired of the hard. I am ready for something good to happen for Emmett, for our family.

Frap, I’m crying again.

Of course, after all the crying at the cardiologist, with him saying that he was glad to see me crying, that he thought it was weird that Mike and I WEREN’T crying last week, considering the situation…he convinced me to inverted commas hold the course, and not have a NG tube put back in. He’s lost 1 pound this week, but the doc says he feels quite relaxed (!) about the situation, and reminded me that if we put the NG tube back in, he’d just start vomiting again. He reminded me that there are no good options for Emmett right now. He did say that he would talk to the surgeons and recommend that he has a g-tube placed, but that for now I should just keep truckin’.

And you know, this man gives a really good pep talk. I was halfway pumped up before I got out to the car park and realized that hey, we’re in the same exact situation that we were in when I walked in this building. And then I felt like crying again.

So we’ll see what the weekend holds.

We did get our genetics appointment moved up to Monday, so I’m happy about that – maybe they’ll have some ideas as to what may be going on in that teeny tiny body of his.

Oh, one more thing: the cardiologist asked how our marriage was doing, did I think that Mike and I would stay together, given all of Emmett’s needs. And while this is very much stressful for us, and we fight more than usual, lose our tempers more than usual, and both feel like we’re doing more than our share, I DO think we’ll make it. For Mike and I, divorce isn’t really an option. We promised God, and we promised each other. And if I could pick one person to go through all this with, I would chose Mike every time.

He is my soulmate – I don’t want to forget that.

Mike, if you’re reading this, I love you. I’m sorry I’ve been such a poophead when you’ve called this week. Please hang in there with me.

And thank YOU GUYS, for hanging in there with us – its got to be hard to read this stuff – after all, I don’t even want to be living it. Thank you for giving me permission to be sad, mad, whatever. And thanks for continuing to pray, and to hope that someday, somehow, things will get easier, and maybe even better.

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12 Comments

Filed under health issues

12 responses to “Friday Update

  1. Beth

    Now I’m crying. I want so badly to help you, to make this all a little better for you. This isn’t what you expected all those months ago when you were waiting for a baby.

    I know you’re having a rough time. And you are justified in your frustration with this situation.

    I’m happy to hear that the genetics appointment is coming up soon. Maybe some answers will come from that.

    Things WILL get better. It won’t be this way forever.

    Keep on hanging on…hang on to Mike, to us, to your boys. You’ll get through. Being honest about how you’re feeling is so much healthier than bottling it up.

  2. Oh, Riggie. (((Hugs))) It’s lousy and there is no way around that. Just deal with it the best you can. I think it’s normal to be frustrated with him. I get frustrated with Mallory for things like not going to sleep when I want her to, so I can’t imagine if she refused to eat. Don’t worry about the attachment. It’ll come. In the past I have had students who were SO much WORK. Who threw chairs at me, slapped me, swore at me, cut their clothes, etc. And I always wondered “How will I bond with this child?” But it always worked out. In fact, even when a child continued to have problems an entire year, we always were bonded in the end. It will sneak up on you one day and it will just be. Try not to doubt yourself so much! You are doing a GREAT job! Matthew and I wish you the best. We will pray for improvement with eating. If he did 9 ounces one day, he can do it again! What does he weigh now? Mallory had dropped to the 7th percentile in the summer and is in the 75th now! Crazy things, kids. Good luck this weekend!!

  3. Jeannie

    Ren — I love and admire you more than I can say. This is just shitty. I wish I could give you a hug — or at least do something other than sit here and type on this stupid computer. You and your family are in my heart.

  4. Hi. I’ve been reading your blog for a while now, since Laurie at Pho for Five linked to you. I am completely in awe of all that you’ve gone through during what is already a terribly stressful time. My husband and I have three children adopted from China and two of them have special needs. But, we knew that before we brought them home. That makes a world of difference and even then it can be hard. I can’t imagine having all of this just suddenly happen. I just wanted you to know that there are many people who are thinking of you, checking in on you and your family every day, and hoping that things turn around SOON.

  5. This post made me cry, too. I am so sorry this is so hard for you guys and for little Emmet. I am so glad you and your husband have each other and are working through this together. You continute to be in my prayers. And, hey, nine ounces yesterday is pretty good, right?

  6. Ok, crying now too. Lauren, I wish so badly I could be near you…not that it’d help. It’d actually make things much, much more stressful. But still, I just wish I could help somehow. Cook for you maybe…no, I suck at that too. Surely I could find SOME way to be helpful?!

    Anyway, Lauren, I have been thinking about the bonding aspect and imagining you must be having one hell of a time. Here’s the thing…you have a lifetime to bond with him. You just have to get him physically healthy first. And that’s what your focus is right now. Emotionally, you’re all tapped, and that is TOTALLY understandable. I think it’s normal for survival, stay-afloat mode to be your goal right now. Once Emmett is stable, you’ll be able to set bigger goals for your relationship with him. You are not doing any permanent damage in the meantime, the bonding is just on hold or very slow going. It’ll come with time and as circumstances change.

    It’s also really normal to be frustrated with Emmett. Don’t forget you can always set him down in his crib, let him cry, and take a few minutes for yourself. I have to remind myself of that sometimes too. When I’m at the end of my rope, I can put them all in safe places (read: where Jack can’t get to any of the babies!), and bury my head, take a hot shower, or whatever it takes to recover and be “mom” again.

    You and Mike are so strong. I’m actually REALLY impressed that Dr. Inverted Commas thought to ask you about your marriage…especially since he’s a cardiologist (they tend to look at people like they’re just 1 system, the heart, not like a “whole person”). I have faith in you both and in your relationship, no matter how rough things get. Times of stress like this are always tough on a marriage, but you and Mike have a relationship that’s solid, grounded, and founded on deeper things than most marriages. Of course you’re going to make it. Just hang on.

    We’ll keep the prayers coming. You’re doing an amazing job. Keep crying; it’s healthy.

  7. I wish I could hug you and bring you a pumpkin latte (if you like those). Or just come over and hold the baby for you. I don’t know. But I am praying constantly. And I will post what I just posted today on Emily’s blog at teamalexander.blogspot.com (sorry it is so long…but it is good). I also think you might check out her blog–they are facing some unexpected medical challenges with their baby adopted from Ethiopia. Oh–and I honestly don’t know about all SN–but I DO know at least for Ds that it is WELL documented, that marriages are NOT more likely to fail and in fact people report a higher level of marital satisfaction. I can say that seeing my husband parent our son with SN, and how he has risen to the challenges and embraced the differences (AFTER a period of grieving for both of us) has deepened my love for him immeasurably.

    Here ya go:
    To You, My Sisters
    By Maureen K. Higgins

    Many of you I have never even met face to face, but I’ve searched you out every day. I’ve looked for you on the internet, on playgrounds and in grocery stores.

    I’ve become an expert at identifying you. You are well worn. You are stronger than you ever wanted to be. Your words ring with experience, experience you culled with your very heart and soul. You are compassionate beyond the expectations of this world. You are my “sisters.”

    Yes, you and I, my friend, are sisters in a sorority. A very elite sorority. We are special. Just like any other sorority, we were chosen to be members. Some of us were invited to join immediately, some not for months or even years. Some of us even tried to refuse membership, but to no avail.

    We were initiated in neurologist’s offices and NICU units, in obstetrician’s offices, in emergency rooms, and during ultrasounds. We were initiated with somber telephone calls, consultations, evaluations, blood tests, x-rays, MRI films, and heart surgeries.

    All of us have one thing in common. One day things were fine. We were pregnant, or we had just given birth, or we were nursing our newborn, or we were playing with our toddler. Yes, one minute everything was fine. Then, whether it happened in an instant, as it often does, or over the course of a few weeks or months, our entire lives changed. Something wasn’t quite right. Then we found ourselves mothers of children with special needs.

    We are united, we sisters, regardless of the diversity of our children’s special needs. Some of our children undergo chemotherapy. Some need respirators and ventilators. Some are unable to talk, some are unable to walk. Some eat through feeding tubes. Some live in a different world. We do not discriminate against those mothers whose children’s needs are not as “special” as our child’s. We have mutual respect and empathy for all the women who walk in our shoes.

    We are knowledgeable. We have educated ourselves with whatever materials we could find. We know “the” specialists in the field. We know “the” neurologists, “the” hospitals, “the” wonder drugs, “the” treatments. We know “the” tests that need to be done, we know “the” degenerative and progressive diseases and we hold our breath while our children are tested for them. Without formal education, we could become board certified in neurology, endocrinology, and physiatry.

    We have taken on our insurance companies and school boards to get what our children need to survive, and to flourish. We have prevailed upon the State to include augmentative communication devices in special education classes and mainstream schools for our children with cerebral palsy. We have labored to prove to insurance companies the medical necessity of gait trainers and other adaptive equipment for our children with spinal cord defects. We have sued municipalities to have our children properly classified so they could receive education and evaluation commensurate with their diagnosis.

    We have learned to deal with the rest of the world, even if that means walking away from it. We have tolerated scorn in supermarkets during “tantrums” and gritted our teeth while discipline was advocated by the person behind us in line. We have tolerated inane suggestions and home remedies from well-meaning strangers. We have tolerated mothers of children without special needs complaining about chicken pox and ear infections. We have learned that many of our closest friends can’t understand what it’s like to be in our sorority, and don’t even want to try.

    We have our own personal copies of Emily Perl Kingsley’s “A Trip To Holland” and Erma Bombeck’s “The Special Mother.” We keep them by our bedside and read and reread them during our toughest hours.

    We have coped with holidays. We have found ways to get our physically handicapped children to the neighbors’ front doors on Halloween, and we have found ways to help our deaf children form the words, “trick or treat.” We have accepted that our children with sensory dysfunction will never wear velvet or lace on Christmas. We have painted a canvas of lights and a blazing yule log with our words for our blind children. We have pureed turkey on Thanksgiving. We have bought white chocolate bunnies for Easter. And all the while, we have tried to create a festive atmosphere for the rest of our family.

    We’ve gotten up every morning since our journey began wondering how we’d make it through another day, and gone to bed every evening not sure how we did it.

    We’ve mourned the fact that we never got to relax and sip red wine in Italy. We’ve mourned the fact that our trip to Holland has required much more baggage than we ever imagined when we first visited the travel agent. And we’ve mourned because we left for the airport without most of the things we needed for the trip.

    But we, sisters, we keep the faith always. We never stop believing. Our love for our special children and our belief in all that they will achieve in life knows no bounds. We dream of them scoring touchdowns and extra points and home runs. We visualize them running sprints and marathons. We dream of them planting vegetable seeds, riding horses and chopping down trees. We hear their angelic voices singing Christmas carols. We see their palettes smeared with watercolors, and their fingers flying over ivory keys in a concert hall. We are amazed at the grace of their pirouettes. We never, never stop believing in all they will accomplish as they pass through this world.

    But in the meantime, my sisters, the most important thing we do, is hold tight to their little hands as together, we special mothers and our special children, reach for the stars.

  8. TX Cajun

    Lauren,

    I remember when J was an infant and was medically fragile. I was so consumed with “keeping him alive” I in a way lost myself. I know it is hard and especially when family and friends are a world away. I guess what i want to say (not saying it too well) is give yourself permission to grieve, some how step away from the stress even if not for a very brief time and stay positive that Emmett will get through this and what an amazing life he has ahead of him. I look at J almost 5 years later and can’t believe what we all have been thru in the past four years.

    Keeping you and your whole family in my prayers.

    Christy

  9. Jennifer

    I’m so thankful that you’ve already gotten many kind, caring, and encouraging words to your post. My heart just hurts for you. I know this is not what you planned. Not even in the ballpark of what you thought it would be. And it seems to just get worse as time marches on.

    One thing that jumps out at me from this post in particular is that Emmett is not refusing to eat because of ANYTHING *you* are doing wrong. Or not doing right. Or whatever. It’s got NOTHING to do with you! Seriously, you would not have picked up a 6 month old, 10 pound baby if he was eating well in the orphanage. That simply doesn’t make sense. They may have TOLD you he was a ‘great eater’, but I’m sorry…a 10 pound baby at 6 months old isn’t a ‘great eater’ by anybody’s standards.

    Obviously, there is something *wrong*. What it is, who knows. Hopefully the geneticist will be able to give you guys some ideas as to what might be going on. I have no doubt whatsoever that whatever is going on, IT IS NOT YOU! Please, please, please do not beat yourself up over him not eating.

    2 Corinthians 12:9 says: But he said to me, “My grace is sufficient for you, for my power is made perfect in weakness.” Therefore I will boast all the more gladly about my weaknesses, so that Christ’s power may rest on me.

    No matter what, God’s got this. He really does. Even when we doubt. Even when we wonder how on earth He chose who He knew could handle difficult situations, He’s got your back. Wake up in the morning and remind yourself of this. Walk through your day reminding yourself of it. Go to bed at night reminding yourself again.

    When I say ‘You can do this’, you have to know it is true because YOU ARE doing this. Day in, day out. Even when it’s hard. Even when you think you can’t. YOU ARE. And I’m so very proud of you.

    Hang in there. Much love sent your way daily!

  10. Beth

    Lauren,
    I really hope you feel all the love that we are ALL sending you. Reading all these responses is such an enlightening part of my day. And I see how many wonderful women you have on your side.
    We love you and we are all here for you, in any way that we can. Many of us are far away, but we are constantly sending you positive thoughts and prayers.
    I know that doesn’t help in the moment, in your times of stress and frustration. I know we would all love to be there with you…and not be so far away.
    Take care….and yes, you ARE doing it! And regardless of what you think, you are doing a wonderful job. You are a strong woman and a great mom.

  11. I’ve avoided commenting, because anything I think of to say seems so horribly inadequate. Just know that many of us are thinking of you and sending prayers your way. Please hang in there the best you can. You CAN do this.

  12. I have no clue what you are going through but I want you to know I am praying for you and thinking about you all the time.

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