A Little Something Extra

Thursday, March 20, 2008

Sorry

Has it really been two weeks since my last post? It’s been a bit hectic around here. I’ll do my best to make this easy to read.

Nashville ambassador to Jennie – My dear friend, Mary, came to visit and it was a huge ministry to my heart. She thought she was coming here to “work,” but the biggest blessing was simply her presence. Nathan cried when she left. He wanted to go with her to visit “Gam and Daydee” (that would be Graham and Brady to the rest of us).

Adopting our family – One of the most amazing things that has gone on for the past few months is that Mary coordinated a “shower” for us where we were adopted for various people for a week and they showered us with cards, encouragement, gifts for Nathan, phone calls, meals, gifts for Micah, gifts for us, etc. It’s been incredible. Thank you to those of you who have joined in. I’m WAY behind on thank-you notes. I’ll get there eventually, but please know how much we appreciate the love that has been poured out. And the meals people have brought over have been a HUGE help. It’s now going to be a bit more challenging (see Diet section below).

Feeding Micah – Aside from congestive heart failure, the worst thing going on with Micah these days is that his tummy seems to be consistently crummy. He no longer will come close to taking a full feed orally (it’s been 2 weeks since that last happened). I think it’s because his tummy feels awful when food gets in there. He screams so we vent his tube and he kicks out a ton of air/gas bubbles. Then a couple of days ago he spit up for the first time ever. And last night he was quite “urpee” and nothing calmed down his tummy except sitting upright, so I snuggled him most of the night (barring a break to calm Nathan down because he woke up crying too). It was a long night. He’s on day 6 of Prilosec (after a week of Zantac did not help).

Diet – Micah has been receiving fortified breastmilk since the about the middle of February, to get his calorie count higher without having to increase his fluid intake too much. It was one thing to go from 20 calorie breastmilk to 22 calorie fortified mix. But a week ago his cardiologist wanted to go from 24 cal to 27 cal. I don’t think he’s tolerating the 24, so I cheated and gave him just breastmilk for a few days to see if it changed things but it hasn’t. He’s still screaming. And Micah rarely wakes up hungry anymore. Since medicating hasn’t helped, it’s time to try changing the diet, both his and mine. So now we’re going dairy-free. I’m not sure that will change things, because he was getting straight breastmilk throughout his NICU stay and he didn’t have these problems then. His pediatrician said that many babies with g-tubes are “urpee.” Great. Maybe someone could have warned us about that. So, now we are going to cut dairy from my diet and fortify the breastmilk with soy formula. We won’t be pulling anymore milk from the freezer (I have TONS frozen from while Micah was in the NICU and on lower volume than he’s on now). I have cut back to pumping 3 times a day and I’m about 2-3oz/day short of what he needs to consume. So I’ll have to figure out whether I want to try to increase my supply or just increase the amount of formula he takes. The feeding part of this is quite time consuming. We spend up to 30 minutes letting Micah try to take food orally. Then we “tube” the rest. But in the process of tubing a feed, he exerts a lot of energy screaming and pushing his stomach contents out through the tube. Just when you think you’re able to add more milk to the syringe, he screams again and kicks it back up. Then you have to wait for him to calm down and gravity to push it back into his stomach. Many feeding sessions take an hour. Combine that with pumping, and I really feel like I spend the majority of my day feeding Micah. It’s quite draining.

Cardiologist – After raising Micah’s medication doses every week, this week we were told that he didn’t need to go back to the cardiologist for 2 weeks and his meds don’t get changed. I guess that’s a good thing. His respiratory rate continues to be high and I hate seeing him breathe so hard. I think we’re still looking at May for heart surgery, but he definitely needs to grow more. He made it up to 8lbs 11oz yesterday but was only 8lbs 9oz today (yes, it makes a difference whether he is weighed before a major diaper change).

Therapists – We’ve had our first visit with our Birth to Three service coordinator. In a nutshell, Birth to Three is a national program that is run by counties (so each county provides different levels of service). They coordinate physical, occupational, and speech therapy for Micah and they come to the house. Our service coordinator and a speech therapist were here yesterday for a speech assessment and saw one of Micah’s feedings (which included one of his better sessions with a bottle lately, as well as the standard screaming session). For those of you reading who are not familiar with all this therapy stuff, you might wonder why a newborn sees a speech therapist. Well, a baby’s ability to suck and swallow effectively can play a large role in his ability to speak later due to muscle development. So we really do care about how Micah is eating from a bottle. The speech therapist was impressed that we go through the effort that we do for Micah to eat orally and then tube feed him, rather than just feeding him through the tube. Apparently many parents don’t make the effort. A PT will be here tomorrow for his initial assessment. I don’t think the PT will be quite as impressed, since Micah seems to have very low muscle tone in his neck. Then sometime soon all 3 will come here and together we will develop a plan for Micah. I’ve heard through the grapevine that our county is not the best for Birth to Three. We’ll see. If we don’t like their plan, we can go with private providers.

Weather – Please, Lord, bring the spring here. We finally hit 40 degrees this week. I need to see flowers and grass. The snow is finally melting. But I don’t think the big parking lot piles will disappear until July at the rate we’re going. Once it’s warm enough to go to the park, then I’m thinking Nathan won’t be quite so, well, two. He’s more stir crazy than I am.

My mom – is my hero. I survived a few days without her here, but I didn’t have therapists visiting and Micah didn’t have as many doctor’s appointments as he did during the past week (but we have NONE scheduled next week). She has selflessly served us well.

St. Simons – Mark and Nathan are going to the beach in early April to visit Mark’s parents, who wisely vacate the state of WI this time of year. We have been looking forward to this vacation for a year since we weren’t able to go last year. Micah can’t travel, so I’m staying home with him. It will be Nathan’s first experience walking on the beach. I hate that I’m going to miss it. Mark proposed to me on that beach on St. Simons Island. I know he’s sad that I can’t go, but he needs a vacation. So do I, which is why…

Nashville – I’m going to make the trip to my 10-year reunion. I hate the thought of going to Nashville without Mark. But I’m looking forward to seeing friends. And it will be great to get on a plane without diapers. My mom is going to come back to help Mark since I’ll be gone for 4 days.

Now that you’ve made it through the lengthy update, here are some updated photos:
Okay, I'm ready to go home now! Family photo after Micah arrived home for the first time.
Micah's first visitors. Thanks, Charlotte and Ron, for taking such great care of Nathan.
First time in the bouncy seat. He doesn't like it as much as Nathan did.
Isn't this Bumbo seat for me? Thanks, Jim and Salina, for the Bumbo. Micah will get a lot of use out of it, I'm sure.
Micah with Mary
Mary with the boys
Check out Micah's right ear. He tends to turn his head to his right and his ear always ends up folded over.
Mary brought Micah (and Nathan) some Vandy sandals. It will be a couple years before Micah can wear his! :-)
Had to add this adorable pic of Nathan in his chair with "Thomas juice."

Nathan loving on his brother

Micah with his buddy, Brandon, who lives about 45min from us and was born in Milwaukee with duodenal atresia and Down syndrome just 5 weeks after Micah. It's so fun that God introduced our families to walk this journey together.

6 comments:

Beth said...

Thanks for the update! It sounds like things are going pretty well. The pictures are GREAT!!!

I have posted about it being World Down Sydrome Day on my blog and I included a link to your blog - I hope you don't mind, but if you do, let me know and I can take it off.

In Honor of World Down Syndrome Day

Beth

Jonathan said...

THANKS for the lengthy update. I'm so impressed. :) Miss you...you're in our prayers!

Jonathan's mom

Ami said...

Thank you so much for the update, Jennie! I've been checking regularly for one, and I love all of the pics. Continued prayers for your whole family.

Kacey Bode said...

I have been checking your blog regularly, sounds like you have been really busy, thanks for the updates and especially the pictures!!!! Your boys are beautiful!!!

Melanie said...

Glad to get this update...I have been checking your blog everyday and I was worried about you. Hope you can have an uneventful holiday weekend!

Gudlaug said...

Hi,
just wanted to share the following information with you about infant colic. I know your story is more complicated than most, but never the less - it might be worth the try.
http://fourtimesthefun.blogspot.com/2007/10/curing-colic.html
(scroll to the middle of the post)
I'm sending this link because I think it gives good explanations, hope you get the time to read it.
p.s. your boys are beautiful, such handsome little men.
GK