The Therapy Journey Has Begun

Now that we’re home from the hospital, updates and improvements hard more difficult to forward without being so repetitive. Physically as far as quality of life … as far as we know … he’s happy, pain free, fed and clean. Developmentally, on a gross-motor basis, he is a very special and loved, typical baby. We haven’t had any apnea episodes (praise God!) since his first week home. So, to me? My baby is healthy. He’s healthy! He’s stable. He’s a co-slept, will be cloth-diapered, exclusively breast-fed baby! He is learning to self-soothe without crying it out, he’s learning to control his big ‘ol heavy head, and his sister adores him. We couldn’t ask for more.

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Medically: he is in the 8th % for weight, 20th % for height, and 96th % for head circumference. His head has come down from 47cm at birth (that of a one year old average!… I think a vaginal delivery would have killed both of us) to 41cm now. He’s still big, but back on the charts! Woop woop!

There isn’t a whole lot of difference in the amount of brain matter visible on ultrasound now compared to the one a few days after his shunt. He has a brain, and it works – he isn’t brain dead! See? So much to praise God for. We have no idea how to estimate how much ability his brain has. The fluid levels went down .33cm in the couple days after birth, and as of last Friday, an additional 0.71 cm. Mid-April, Noah will get an MRI. As his soft spot closes (as it does in all babies) the ultrasound is becoming less accurate, less helpful. The MRI offers more information. That said, The magnets in the MRI reset his programmable shunt – so doctors will have to reset it. They also may/will likely decide to change the flow rate. We’re HOPING we don’t have to re-teach him to eat; the fear is that he will quit eating again because of the shunt reset. It took us nearly 12 days to teach him to eat again after the last adjustment. We’re hoping being at home speeds that process up this time.

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I’m still working to nurse. We nurse 3x a day, and usually get one good latch per day. His latch is always shallow, but it doesn’t hurt and he gets something out. I hope this coming week to increase his nursing to 5x per day and not offer bottles after two of those feedings. Right now he gets offered bottle after every feeding, and always takes it unless he eats well at his 6am one. Nursing is a constant battle and I’m fearful if I push too hard, it’ll dissuade him from eating all together again, and I do NOT want to be hospital bound! Pumping for my little sweetheart is a full-time job within itself. My amazing daughter has more patience than most adults! Every 3 hours, for an hour-and-a-half, my time is consumed. 30 minutes of feeding, 30 minutes of pumping, 10(ish) minutes of allowing Noah to root/decide if he wants to nurse. At the times he doesn’t choose to nurse, 20 minutes of cares (diapers, bottle cleaning, pump set up and take down, etc). On the times he chooses to nurse, add another 10-15 minutes.

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I have asked for ophthalmology to come back in the picture. After asking this, pediatrician did a quick eye exam in office. The left eye is still not opening as it should, and the pupil doesn’t react to light like the right eye. His left ear was worse off in the hearing screening that he failed, and his right thumb/hand is tighter than the right. In fact, his whole left side is tighter than his right including the fact he doesn’t like turning his head to the right. I’m wondering why more of his left is affected.

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Sooo this brings us to therapies. Speech Therapy may release him, and not keep him as a patient. I’m okay with that. Friday at our weight check, he told me, “If you think he needs something and want to try, let me know and I’ll make it happen for you.”  I am okay with being released from in home speech, but he said he would fill out the referral form I need to see a Speech Pathologist who is also a certified LC specializing in NICU back to breast. I have to keep reminding myself of all of the physiological reasons, aside from nutrition, breast is best. ‘Cause man, this is a LOT of work. It’s EASY to quit offering breast, and let him take his bottle. With bottle feeding, he gets the nutrients he needs. That’s all that matters, right? WRONG! Breast fed babies, nursing babies, have advantages over bottle fed babies too. And I want to do what I can, even if he never fully gets all his nutrition from breast, to give him the best I have to offer. That’s my job. That’s my want. I honestly can’t see why anyone wouldn’t support that. I see lactation once a week (we have too many appointments to do 2x a week as she suggested).

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Physical Therapy does not think Noah is behind in his gross motor (yay!). We see PT once a week for 8 weeks, and get reevaluated. Ped thinks we’ll stay once a week because he feels we will be behind eventually and getting orders and approval is complicated (?). Noah isn’t (yet) toooo far behind in Occupational Therapy tasks, but he’s getting there quickly. We’re going to see her once/week, but he’s struggling enough that the OT will be here, not the OTA. She did a series of maybe 15 “tests” on him today, and he did *well* one 3-4 of them. The rest were boarderline. He’s referred to as a floppy baby.

When I was pregnant with Kara, I felt CALLED to be a SAHM. We couldn’t afford it, so I found the next best thing. A job that allowed her to go with me. I felt like I was doing the right thing as called on by God. I absolutely {loved} nannying, adored Kara going to work with me, and *still* absolutely adore Anna (now 5!) and Carson (3). When I went to the post office, I still felt like I was doing the right thing. I didn’t question leaving Brooke’s, pregnant with Noah, or starting with P.O. pregnant. Now, I know society and medicine says I need to stay home. “Motherhood” says I need to stay home. I’ve been praying to God to help us through this: financially, spiritually, and emotionally. I didn’t ask Him to give us money, I asked Him to help us find a way. I don’t feel ‘called on’ to be a SAHM right now.

SO — I called my boss and explained to her Noah’s situation. The fact I need to be with him more than a typical baby even when he doesn’t have appointments. I am going to attempt to work 3-1/2 hours a day, 6 days a week every day I don’t have an appointment in Charlotte for Noah. My mom took the CPR course at the hospital with us, and she is going to babysit the kids while I work. I am going to reevaluate my work life regularly, and and if at any point I feel called to be at home by God or the situation changes I’ll reasses. In the mean time, I’ll be working on my plan for residual income over time and a WAHM lifestyle.

IMG_7844b&wJosh and I still appreciate all of your prayers and thank you all for caring for our family!

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Goodness! Okay, that’s all I got. Good job for making it through all that! Shew!

Noah’s Story
What is Wrong with Our Baby Boy?
Baby Boy Eagle Has A Name! He’s Born!
My Two Day Old Warrior
Totally In Love, Noah’s Improving at 5 days old
Noah’s Moving On Up
There’s Hope In Progressive
The First of the Setbacks
Back on the Road to Recovery
Slow and Steady Wins the Race
Steps Toward Home
Noah’s First Week Home

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2 thoughts on “The Therapy Journey Has Begun”

  1. I am so impressed with your wonderful attitude. You are blessed to have a mother who is able to help you out. I know she loves all of you and is a wonderful help to your family; that sounds like God’s answer to me! I will keep all of you in my prayers.

    1. Thank you Julie! I remember your family dearly, especially Abby being close in age to myself. I am very grateful for my mom as I know not everyone is blessed with family like her. Kara adooooores her (and all the grandparents) but life would be a lot harder without her!

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