whatsthenealio will keep you updated on our family status. It's most likely that it will revolve around Micah's progress and health updates.
Micah had his first playdate this Wednesday morning with baby Nate and Carlton. While Nate probably didn't get much out of the experience, Carlton and Micah seemed to enjoy each other. For example, Carlton thought that it was so cool that Micah got to wear a "ball" on his head. And, Micah thought Carlton's toes were simply awesome! We moms had the best time of all, no doubt!
Pictured, they are Carlton, 6 mos., Micah 10 mos., and Nate, 7 weeks.
Heather
Jared was on staff at Parkway for two years and we became good friends with the King family. Jim is Micah's "Pops" and Linda hasn't chosen a name yet, but I'm pushing for "Honey" or something equally... well, sweet. In a baby dedication at Parkway, the entire congregation is included and everyone knows that they are a part of an important day, not only in the family's life, but in the church's life, also. It's a reminder to continue loving and nurturing each other as much as we want to nurture and love the new baby.
Because of RSV season and that pesky 4.5 months in the hospital, Micah wasn't formally dedicated until April 19th. Some of our family were there and a special friend from NICU brought her son Krystopher, whom we refer as Micah's brother. It was the first time that the boys had met outside of the hospital. And, it was the first time Krystyn and I had held each other's babies. Honestly, that moment was every bit as special to me as the dedication was. Krystyn and I had very uncommon experiences and we shared in a lot of loss, not the least of which was a "normal" pregnancy. So, we have a very good understanding of each other's experiences and a special love for each other's sons. When our time at Northside NICU was almost up, depending on our nurse, we got to unplug Micah and take him for walks down our hall. We always stopped to wave at Krys. One of the photos from Micah's dedication is of our boys holding each other, which they did all by themselves, as if they knew how special the day was, too.
Heather
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For Micah's first Easter, we celebrated with our Parkway family and had dinner with the Kings afterward (where Micah refused to eat, but loved being loved on!). Micah's adorable little outfit was purchased from a consignment store in Waycross near where the old Strickland's Diner was. Sorry that I can't remember the name of it, but I did love that store! It's sort of silly to even mention that, but I'm so thrilled that I get to do these frivolous things like "Easter outfits."
Vanity aside, Easter was very, very special for us. Jim talked in his sermon about the power of God being so overwhelming. He asked us to imagine watching a child, our child, suffer in true agony and then said to now try to imagine not helping your child. That's what God did. In order for Christ to be a sacrifice for us, God had to momentarily bottle up all of his power and some still seeped out in the earthquake and the tearing of the temple curtain. It was a very impressive image for us of God's power and of God's love for God's Son. Jared and I could not keep from thinking about our own suffering son. We watched him crave his own life when there was absolutely nothing else medically available to save it. We were desperate watching him try to survive everyday. We are so glad, especially in light of God's own sacrifice, that our son was spared his life. We witnessed the passing of several babies in NICU. I don't know why such horrible things happen to anyone. But, I know that God knew my grief and that God knew my love for my own son.
People have always said, "It's different when you have a child." I didn't know that "it" meant "everything."
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We've struggled from the very beginning to feed Micah. It took a lot of work and attention to make sure he acquired and maintained the desire to suck. He never really mastered sucking and latching on well (hence he eats from a bottle instead of a boob). But, lately he's been eating much, much worse from a bottle. As with everything else, Micah's eating is on a "corrected age" chart. He should be eating at least 25 ounces of formula each day for his corrected age, which is about 7.5 months now. For the past three weeks, he's averaged about 10 ounces a day, not good. I added in an additional spoon feeding, now he has three, which has a lot of calories. But, he's deciding what exactly he likes to eat now, too. He does not like to eat fruit with oil, but will eat fruit with chicken. He will eat veggies with oil, especially organic carrots. Yes, he prefers the organic carrots to the conventional carrots. Clever, clever boy. We add oil to add calories. At 120 calories per Tbsp, it's a pretty fair increase over what he used to eat.
I emailed our dietician on Monday, but I suppose that email was lost. In desperation, I called the office. Fortunately, Thursday is her only day in the office and I was able to reach her this afternoon. I'll now add a scoop of formula to each fruit spoon feed instead of "scoop" of oil. Each scoop of formula contains 45 calories and is completely balanced with the nutrition Micah needs. This should also prevent us from having to use vitamins, which aren't complete and Micah despises (as do we).
In a move of true desperation, having not heard back from our dietician, I headed to the grocery store to get some ready to eat formula. Turns out that stuff is very, very expensive. One of my NICU mom friends has a baby that has consistently refused powdered formula and will only eat the ready to eat stuff. So, I tried it today and Micah finished off over 3 ounces of formula in 15 minutes, which is absolutely phenomenal for him! There's a chance that it's just a fluke, so we're going to continue with the ready-made formula through the weekend. If Micah improves his bottle eating significantly, then we'll get a prescription from our doctor for it and WIC* will provide the formula that Micah needs.
I didn't think I would be having this much difficulty with feeding Micah at this point. I really thought his eating habits would improve, that he would want to eat more as he got bigger and older. Nope. Not this kid. My biggest hope at this point is that Micah will think that ready-made formula is the most rockinest stuff on the planet and gobble it all up!
*Micah has been on WIC since we left the hospital. His disabilities qualify him for the service from the government. And, while I hate the "educational classes" that I have to sit through and the dingy, nasty health department where I have to wait with poor mothers, scanky mothers, and desperate mothers like myself, I love that Micah can have such expensive formula readily available to him and even have it ordered by our pharmacy. So, regardless of any person's party affiliations, I am as glad now as I've ever been for my personal support of government assistance programs. It means something totally different when you're in it.
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Due to severe storms that took out the electricity at the medical office, Micah got his helmet this Tuesday instead of Monday. The fitting appointment lasted a full hour and was clearly uncomfortable for Micah. The inside of the helmet is like tight, hard styrofoam that the specialist files down with a special machine to fit the strange contours of Micah's head. We've been increasing the amount of time that Micah is wearing the helmet daily. Tomorrow he has to wear it for 4-hour stretches with a one hour break in between. Saturday he has to wear it for 8 hours twice with a one hour break in between. After that we have to try to increase to the full 23 hours a day. Since Sunday is Micah's baby dedication, he gets a break. Eventually, this helmet will smell like a horrible, rotten gym sock. Yessss!
Usually, it takes an average of 3 months to correct the shape of his head. Nearer the end we may be able to use the helmet only at night. Since the summer is going to be ridiculously hot in that helmet, we're really hoping that Micah can have a few good growth spurts and grow his head in the right direction. That's how the helmet works. It's not like braces. It doesn't change the shape of his head. It touches on the bulges and doesn't touch on the flat places. That way, when his head grows, it grows into the free space.
As you may expect, Micah hates the helmet. Getting it on and off is the worst part. Once he has it on and is playing, he's usually okay. Occasionally he remembers it and gets very upset and tries to push it off.
Today we had physical therapy and the ENT follow-up from Micah's tubes. Fortunately, both appointments are in the same office building, which is at Scottish Rite. If you've never been there, the scene is very impressive, especially if you set foot inside of the hospital itself. We were in the medical office adjacent to the hospital. There are a lot of children of various ages in wheelchairs, some with leg braces, and other obvious issues. To this point, Micah has looked like most of the other kids showing up for appointments in the building. While his helmet is awkward and a nuisance, it doesn't really offend me. But, it was interesting to be the spectacle. I watched and listened as parents shushed their children when they asked about "that baby's weird hat" and scolded them not to stare. It's just an orthotic helmet. And, Micah wasn't the only one wearing one today. For the record, kids are curious and their questions should be answered whenever possible, especially about simple helmets. A couple of the kids really liked Micah's helmet, which was funny. A little boy whose age I'm guessing is about 8 said, "Hey, that looks like a boxing helmet! Cool!"
Heather
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While still in the hospital with Micah, we were told that April would be a safe distance from flu and RSV season to begin taking Micah out. We still have to be very careful with germs so Micah has very limited physical contact with people and you won't see us without sanitizing wipes AND lotion. Still, we're trying to get out and be a part of our world again.
On April 1st, the first possible day of "safety" we took Micah to the outdoor egg hunt at church. Since our kid obviously can't walk yet, let alone walk with a basket and pick up eggs, we went for the photo opportunity! Our wonderful deacon weaseled some eggs into Micah's basket from her daughter's (thanks, Maddie!). We said that wasn't necessary. She explained that part of being a parent is eating your kids' candy. Now we know!
Micah met Carlton, seen with him on the swing, for the very first time. Carlton and Micah went home from the hospital on the same day. Carlton was a newborn; Micah was over 4 months old. (Carlton has a tooth. Micah has none. We're sooo jealous!) We have big plans for Carlton and Micah to be good buddies. :)
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On March 19th, Jared and I shared some of our family story since Micah was born and some of the spiritual lessons we learned. Micah was hidden away and brought in just for the testimony before being hurried away again. He did very well, except for talking during Uncle Matt's prayer. These are a few photos.
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When we left the hospital with Micah in October we had several specialists to help us care for him: cardiology, pulmonology, gastroenterology, ophthalmology, endocrinology, ENT, urology... I'm forgetting something... We have celebrated being rid of some specialists already, most excitedly the cardiologist! We've also added a couple, like physical therapy and now a specialist for Micah's prosthetic helmet to reshape his head.
As long as there are no new issues, we'll be free of the gastroenterologist this month. Our only requirement was to stay off of Prevacid until April. From here on out the pediatrician can adjust the more benign medications that Micah is on. Yahoo!
It's surprising even to us that he's doing so well. I mean, sure he still hates to eat, but with his genes that's bound to change soon, right?
We have what we hope will be a final checkup with the pulmonologist at the end of the summer. It's still A LOT of appointments, but we're thrilled to see them dwindling!
Heather
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Those of you who have been following our family know that we've been living on a roller coaster, especially in the NICU, and that our biggest worry has been Micah's weight gain. Well, he finally made it to 13 pounds! And, he measured in at 24 3/4 inches long, growing a full 1/2 inch in a month.
Sadly, Micah has been enduring his first cold. After a couple of trips to the pediatrician, the diagnosis is official. Micah has a real cold. I broke down and cried. Bless our pediatrician's heart, she just let me cry it out. It may sound a bit ridiculous to most of you, but the fear of what this cold could turn into is devastating. Micah's lungs are still damaged and under-developed. The diagnosis was official last Thursday with a two-week suffering through the cold promise. Micah seems to be feeling better already, though. He spent a lot of time playing with lots of toys while he sat up (supported by Mommy).
Our doctor also said that Micah would stop eating and that it would be a long time before he ate as much as he used to again AND that he'll lose 1/2 pound in the next week or so! I think that's probably what pushed me over the edge. This baby is eating 6-8 ounces of food less than he should be for his corrected age as it is!
So, here is a sweet photo of Micah at 13 pounds. Hopefully he'll get back up to that weight again soon.
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Sincere thanks to my dear friend Brooke for filling me in on a great product: the breathable bumper pad! AMAZING! I have only just ordered it (get yours at target.com), but can't wait for it to get here. Micah keeps getting his tiny limbs caught in the crib slats when he rolls all around. I'm hoping this magical invention will spare us from crib injuries. I really wish I hadn't shelled out so much money on that nice crib set now, too. All I'm using is the skirt and sheet, which I could have gotten for what? $30 at Target, right?
Heather
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