some words on us…

I thought today I’d take advantage of some quiet time to update you about some of the things that have been going on with my little family. In general Madmim has been just a creative outlet for me, and for the most part I’ve kept church and state separate so to speak, and kept my personal life fairly private. I’ll be straight up with you and say that it’s hard for me to share such personal things here, because it makes me feel pretty vulnerable. But I suppose that like any blog it’s a package deal, and I’m going to step out of the norm to share.

Our little Tiny hasn’t been doing as well as we had hoped. Up until two weeks ago she was doing alright (although we were very much still trying to figure out feeding), but about that time she started to have these horrible episodes during feedings where she would choke, cough, struggle to breath and just basically drown. She began to eat less and less, and these frightening episodes eventually were happening with each feeding. This last week we were struggling to get even a half an ounce in her a time, and during the week we ran the gamut of doctors–our family doctor, Instacare, our ENT, a speech pathologist/feeding specialist, and then finally the ER up at Primary Children’s Hospital on Sunday. What had been diagnosed as reflux had escalated to the point where she wasn’t eating almost anything, was very dehydrated and very weak. After some blood work + IV, they sent us home with instructions to come back in the morning to have a feeding tube put in as well as a swallow study done (they were hoping to save us money by not admitting us). So Monday we spend the day at Primary’s, and discovered during the swallow study, that for some reason she isn’t swallowing properly/completely, and the milk just pools in her throat and spills over into her trachea and she was therefore aspirating frequently. The radiologist and speech pathologist were amazed that she was even okay considering what they discovered. So they put an NJ feeding tube in (which was probably the hardest thing I’ve ever had to watch as a mother), and then were ready to send us home. When I said I had no idea how to use a feeding tube the radiologist tech said she didn’t know how to explain and sent us back to the ENT office to get instructions. Somehow there was a mix up/lack of communication, and the attending person (nurse? I’m not even sure if she was one, and was clearly very unprepared to teach us) ended up explaining how to feed her, but she thought we had gotten an NG tube rather than NJ (stomach vs. intestine), and she ended up instructing us wrong. At any rate, when Tiny PULLED OUT HER TUBE THE VERY NEXT MORNING, we found out all this when we were desperately trying to get a hold of someone who could tell us what in the world to do. My speech pathologist/feeding specialist called and was horrified to find out that we were feeding her through the tube via syringe and not a pump. She said because we had not been hospitalized, that things had been overlooked and we were sent home without proper instruction and equipment. By this time our little Tiny was dangerously dehydrated, and so back we went to the hospital where she was admitted. Her tube was placed again (not quite as traumatic this time), but there was a kink in the line, and it was popping out, and after an hour of trying to get the sucker taped down, they gave up and sent her back to down to radiology to find out if it was still in the right place (thankfully yes!) That delayed her a lot, and so they tried to give her an IV right away, but apparently she was bone dry by that time, and they attempted to stick her SIX TIMES before they could get the blood to flow. There’s an hour of my life I never want to think about again.  My the time she finally got the IV and milk it had almost been 12 hours since her last feeding, and hence it has taken her much longer than we anticipated to stabilize.  She’s also still had a hard time breathing at times, so they need to make sure nothing else is wrong–the Dr. last night was almost ready to just take the tube out again. So we’ll be here for one more night so they can observe and make sure she recovers okay.

It’s so hard to see my little baby struggle so much. She’s got literally 6 or 7 cords/wires attached to her, and with all her pokes and pinches all over her body, she’s had to endure so much. She’s been so alert and aware through it all, and I can’t help but think she’s such a brave little spirit.

As far as her final diagnoses–there isn’t one yet. We know that for some reason she’s not getting her fluids down and they’re going the wrong way, and she’s not  responding normally to the sensation of aspiration.  We’ve been told it could be just a matter of maturation, and she just hasn’t figured out the coordination of suck, swallow, breathe; in that case it would be something she’ll eventually figure out.  Another possibility is that her brain isn’t sending the proper message, and that the problem is neurological and could be a sign of retardation.  My personal feeling is that we’re still missing something, because this is something that has developed. If she had been aspirating this entire time, then wouldn’t she have at least gotten pneumonia by now? I think it’s very possible that it is as simple as reflux irritating her down there and she has become progressively irritated, tired, and then weak and so she’s not getting it down. I’m hopeful that it will resolve itself. It’s funny how I was so heart broken about having to bottle feed, and now I would give my left elbow for her to be able to. It’s all relative I suppose.

I think for the most part I’m doing pretty well. I’m trying to take this in stride and just think about managing one day at a time. I have bounced between the two extremes of feeling very overwhelmed and depressed to very hopeful and positive. It kind of depends on how well-slept I am:)  I’m sure I’ll still be sewing/crafting/ blogging albeit sporadically  because it’s very therapeutic for me, and a needed respite from the stress of everything.  I’m grateful to be near family and friends who can and have helped me especially with child care–and especially with the unexpected hospital stay. It kinda makes me want to  stick around Utah when Allan’s done with school.

Well, to make a long story only slightly shorter, you can never predict what life will throw at you. When she was first born and we discovered she had hearing loss I spent a couple hours crying over all the subsequent struggles she might deal with. Now those struggles don’t seem difficult or as big deal at all to me when I consider what else might be in her future. And I feel stronger to deal with those problems. I’m hopeful that these current problems will be temporary, but it’s true that God bears you up for what your asked to face. As long as you look at it in small pieces. I’ve been praying non-stop for the small miracles–things like Please God, let THIS poke work, or send angels to comfort her during the tube placement, or help her to feel my love even when I can’t hold her. And so little by little you get through the moment, or the night, or the week, and it doesn’t seem so bad. I don’t pretend to feel this positive all the time, but the point is is that there are plenty of moments when I do, and that’s good enough for me.

24 Comments

felisha

Mim- I am so sorry. We are praying for sweet, little Harper. It brings tears to my eyes hearing your story. I remember them poking Brinlee and her crying (like she was saying please stop, it hurts) and I would go visit her and she would cords everywhere and IV in her head, arm, leg, where ever they could get it in. I felt so helpless.
Just know we love you guys and if you need anything at all, please don’t hesitate to ask us.
Many more prayers your way!

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Miranda

Oh man, mama. What a tough experience you’re going through. I can’t even imagine what I would be feeling in your shoes. I’m happy to hear you are surrounded by family and friends to support you. I’ll send a prayer heavenward for you and your dear family.

xo Miranda

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Veronica

I’m so sorry. We went through three months of no diagnosis, tubes, pokes, hospitals, and I know how terrible it is to watch your baby go through all that. I am thinking of you and your family, and I just know you will have an answer soon. My best advice is to stick by your guns and don’t be afraid to seem rude or mean — if you need something and are not getting it, it is NOT okay. It is NOT okay for them to not give you excellent care and information. And start doing your own research, because of the dozens and dozens of doctors who saw my daughter, not one of them were able to diagnose her — my mother-in-law found the answer for us through research. This sucks, but you will make it. Love to Harper.

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Kilee Nickels

Mim,
I just started following your blog and have loved reading about your projects! What a hard time for you and Allan! I’m so sorry to hear about your sweet baby! I can’t even imagine and I really feel for you! You’ll be in my thoughts and prayers!

Kilee

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Katy

I just prayed for Harper & your family. As a mom, I can’t even imagine watching my little one go through something like that. May God continue to give you & Harper strength, grace, mercy & healing. May He give doctors wisdom and may communication between your family & medical staff be clear and accurate.

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Sylvia

Miriam,

My heart is with you. Watching a baby go through all of that is so hard. You would trade her places in a second, just like I would trade Seth places if I could–or donate my left leg or my skin for his skin grafts. It is so difficult to watch a child suffer. At least Seth knows what is happening to him and why. It doesn’t make it hurt less, but understanding helps.

All I know is that Harper is blessed with the best parents she could have. I understand those little prayers. I’m saying them constantly.

We love you and I’ll be fasting for Harper on Sunday.

Sylvia

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marci

So sorry for all the struggles, there is NOTHING remotely as hard as seeing our even thinking of our little ones suffering. FWIW, I totally agree with you on that mother’s intuition thing. I’m sure it will all work out and am praying for strength for you all on the road there.

Love from your extended family in MI

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Jennifer

Prayers are being lifted up for baby Harper as well as for you and your family.
You were my first introduction to flower embellishments and I have been following you since before your ebook. 🙂
By you mixing “church and state,” I now know exactly how to pray for you.

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Angela

So sorry Mim! I will be fasting and praying for Harper and your family this Sunday. She could sure use some extra blessings right now–and the rest of you too, I’m sure. Sending you lots of love!

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Hind Luby

I am sending my prayers and good juju to you, your family and your precious baby girl!!!

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Kathleen

Such a difficult turn of events! We’re sending up more prayers for all of you–Harper June, Allan, you, your other two precious children, the doctors, the nurses, the specialists, and all those friends and family so close who are blessed to help and sustain you in all of this. May the Lord answer each of your simple, heartfelt prayers and may He carry you through the tough moments, leading you to peace and even greater trust in Him. Love you!

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mary

Man, that last paragraph just killed me. We are sending thoughts and prayers your way, and thinking about your beautiful baby girl every day. You sound like an incredible mother and I’m sending you strength so you can keep on keeping on.

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Ashley T.

I don’t typically comment, but please know that your family will be in my prayers. Many blessings on your family.

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Emily Balling

Miriam,

I love the little prayers you say for her, especially let her feel my love though I’m not holding her.

Where you mention that it seems there is a puzzle piece missing because she hasn’t always eaten this way, is exactly what I was thinking today. If it were a neurological thing, in my thoughts, then she would have started out this way day 1, instead, its gotten progressively worse. Just as you said it. Have you mentioned this to the specialists?

Thank you for sharing these personal things;
Love you,
Em

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jen

Oh my heart felt heavy and my tears flowed when i read this. We take our kids health for granted until this happens to us. I am sure that your little gorgeous bundle of yumminess will have inherited her mum’s spirit and strength, so she will fight this and come out the other side happy and healthy and (with your distracting craftiness sessions)….oh so stylish too. Hang in there chick. Smiles and cuddles winging their way to you xx

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Taylor

I’m so sorry Mim to hear about everything you and your sweet little girl are going through! I will be praying for you guys. I know that Heavenly Father doesn’t give us more than we can handle and I know that he will bear you up. What a testament to your positive attitude that you are able to see the small miracles in each moment!

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Yam B Fan

I’m so grateful for the giant cyber-hug you’re getting from the Universe. I know that the Lord will continue to send His tender mercies and miracles to you every step of this journey.

Love, tears, blessings and prayers your way . . .

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Sarah H

Hi there! I’ve just started following your blog, and after reading this post, I had to share what a friend recently went through. Her 18-month son was having difficulty swallowing, was choking, aspirating….was misdiagnosed as reflux and after a swallow test plus much more, it was determined that he had a double aortic arch. It’s very uncommon, but after surgery to correct it, he is doing amazingly! Praying for wisdom for all involved!

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Miriam

Sarah thank you so much for commenting. I just googled double aortic arch, and was surprised at how closely the symptoms match what my daughter is struggling with. We have another swallow study tomorrow, and I’m definitely going to bring this up. I really appreciate you taking the time to mention it to me!

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