We're on our way home.... literally (I'm using a wireless card on a laptop... isn't that crazy?!). Micah is very much asleep. Before his 1:00 feeding, he was given a Tylenol suppository to relieve the next invasive procedure which involved two shots. Poor little boy. Then he was completely awake for almost an hour and will hopefully sleep all the way home. I'll post some photos later.
The discharge process has begun and we will be taking Micah home on Friday. Yes, home home. Not to another NICU. I did all of his g-tube care and feedings today, along with giving him his medication this afternoon. Tomorrow we'll do the car seat study (he has to spend 2 hours in his car seat to make sure he doesn't desat, etc.). I haven't decided whether I'm going to "room in" with him on Thursday night. They're leaving it up to me, but the neonatologist said that if I wanted one more night of sleep to feel free to take it. :-)
Micah actually did pretty well with his oral feeding today. Over his 3 mid-day feedings he took about 80 cc's orally. Not bad. He probably would have taken more but I stopped his last one because he was breathing too hard. When he gets to that point, he's probably burning more calories than he's getting.
I'm so excited to get on with our next phase. But it involves so much more than when we brought Nathan home from the hospital. Home health will be coming in twice a week to weigh Micah and check our supplies. Micah is on three medications for his heart. There will be speech therapists and physical therapists visiting Micah at the house (and eventually occupational therapists). There will be visits to the cardiologist. There will be visits to the surgeon for follow-up. Feeding him is a bit more involved than feeding a "normal" baby. And nevermind the fact that he has a button on his belly with a flip top that opens directly into his stomach. Whew, that makes me overwhelmed to put it all down in print. But it's a good reminder that God's grace is enough: He will provide me with the strength I need for each day (and hour and minute). "Therefore do not worry about tomorrow, for tomorrow will worry about itself." (Matthew 6:34)
Micah is doing quite well today. He is only on Tylenol for pain relief. His first feeding was at 10:00am this morning and he wasn't too interested in eating, so he received his first g-tube feeding. He tolerated it well. He ate (orally) about half of his 1:00 feeding, a little of his 4:00, and practically none of his 7:00. He'll be up to his new volume by early in the morning and he gets his last dose of antibiotics tomorrow (I think), so he should get his IV line out tomorrow. The neonatologist hopes to send him home at the end of the week. Wahoo! Thanks for your prayers, everyone. [By the way... Micah now weighs 7lbs 14oz]
We (Mark and I) arrived in Milwaukee yesterday afternoon (we were about an hour or so behind Micah). The NICU here is PACKED and he's sharing a room. They moved one baby out this afternoon so now there are just two of them in there. But his roommate is fairly high maintenance and cries a lot so it's rather loud in there. Anyway...
We were at the hospital rather late last night because it took a while for Micah to get "cleared" by the cardiology team. And as Mark says, the surgery is sort of the side show... the main event is the anesthesia. So we spent some time with the anesthesiology team this morning. They changed his anesthesiologist this morning. Not sure if it was intentional, but he ended up with the Chief.
Micah made it through surgery just fine. He has been very uncomfortable most of the afternoon, though. I think they shot low on the dose of morphine due to his heart condition, and adding a dose of Tylenol didn't improve things much. It was so hard hearing him scream in pain. He's usually a pretty laid back baby. They up'd his morphine and he seems to be settling in well this evening. He had an elevated temperature and an elevated heart rate around 5:00, but both are back to normal now.
The surgeon went ahead and put in a MIC-Key button (which, strangely, is a K-C product). I had been told that he would likely get one in a few weeks and that he would start with the feeding tube being longer while the incision healed. I guess that's one less thing to take care of later. The button is basically resting against his skin and has a sort of cap to open and attach a feeding tube (making it less bulky under his clothing). Micah is receiving IV fluids today and they'll begin feeding him through his tube tomorrow. We don't know how long we'll be here, but I'm hoping it's just a few more days. It all depends how quickly Micah's system handles the recovery from surgery (aka, how quickly food makes its way through his system).
It's interesting being back after being in Neenah for 3.5 weeks. The baby who was next door to Micah back in early January is still in the same location and it was fun to see her mom again. And we have gotten some double-takes from some nurses to whom we then say, "We're baaaack." Micah's nurse overnight was someone we hadn't met yet, but we have a mutual friend: she attends church with a friend of mine from jr high / high school and this nurse has been praying for Micah since before he was born (our friend put him on his church's prayer list). Isn't God awesome!?
Oh, and we did get into the Ronald McDonald House again. What a huge blessing! It definitely has helped us that we have arrived on a weekend day both times we came down here. Mark headed back to Neenah this afternoon and he'll come back to get us when Micah is discharged.
Thank you for your continued prayers for Micah. We can't wait to bring him home.
Micah's surgery to insert his g-tube is scheduled for Monday at 9:00am. We are leaving for Milwaukee at 11:00am Sunday. They say we'll be there 3 days after surgery and that he'll be discharged from there.
Micah's heart is definitely getting weaker. He's sleeping A LOT and isn't too interested in eating most of the time (though when he engages in his feeding, he does very well, so it's not that he's not capable of the suck/swallow/breathe thing). It's pretty scary, actually, thinking about your son going in for another surgery when he's weaker than he was when he was born.
I'm bummed that he's getting a g-tube. We really wanted to avoid that. But I'm even more bummed that he NEEDS a g-tube. It means his heart is too weak to eat enough. Our biggest fear is that we'll miss out on some critical months of mental development while he's not strong enough to engage in life.
I'll find out tomorrow whether I'm able to get into the Ronald McDonald House. If not, I'll be crashing with my future sister-in-law. Mark is planning to meet me down there to bring Micah home, but we'd rather save his time off for after Micah comes home.
It's time for Micah to get the g-tube so that he can come home. The surgical team in Milwaukee could have fit him in tomorrow, but the NICU is full. We hope to hear today whether they can schedule it on Monday or Tuesday.
Please pray that he can get in soon so that we can get him home. Also, I have a cold and I haven't been able to spend much time with Micah (I haven't fed him since Tuesday). His little body can't handle a slight cold so it's important that I not get him sick. We're going to protect him as well as we can, and that probably means staying home for the next few months until he can get his heart repaired. Please pray for sanity for me as I won't be very mobile.
It appears we were making the right decision by not giving Micah oxygen if he didn't need it (i.e., if he had desats, which he doesn't often have). According to his cardiologist, with his left-to-right shunt, his lungs are getting quite enough oxygen, thank you very much. Not all heart defects are the same. And not all babies are the same. As his nurse said today, oxygen is a drug and needs to be managed accordingly. [to the person who posted a comment anonymously, though I appreciate your concern for Micah, I really don't appreciate you passing judgment and suggesting that I might have caused his setback... and in the future, when criticizing someone, you might consider using a positive sandwich... but thanks for commenting].
Micah's cardiologist came by again today. She had expected to see his heart rate drop with the meds, but it hasn't yet. And his respritory rate has gone up (not so good) and she can now hear his heart murmer (which is supposedly a good thing, but I don't understand that part). But Micah's weight has gone up today (7lbs 9oz) and he's taken a bit more from the bottle. If he has a stellar night tonight, we might be able to avoid the g-tube, but it appears we're headed back to Milwaukee. The neonatologist is going to contact the surgical team tomorrow to see where they could fit Micah in the schedule. If we're definitely headed to the g-tube, I'd just assume get it scheduled sooner rather than later. But I think his cardiologist wants to get him regulated on these meds first. Oh, and he's up to 24 calorie formula being added to the breastmilk. They don't want to tax his system by increasing the volume so they're fortifying the volume he currently gets. The hospital is out of the 24cal. Wonder how hard it's going to be for us to find it. And there's a possibility they'll increase that to 27cal. Yikes.
On a more pleasant note, Micah had a good snuggle with Granddad today:
Here's our little guy in his adorable outfit (thanks, Mar). I forgot to take a picture of his back. There are little angel wings on the back of the shirt. The second photo is of the bottom of his feet. So cute.
We had a Care Conference yesterday. It was organized by the social worker, and participants included the neonatologist, cardiologist, cardiology nurse practitioner, physical therapist, genetic counselor, discharge manager, and a nurse. This was scheduled a few days ago, prior to Micah's setbacks of the past couple of days. He didn't eat very well on Tuesday. And when I arrived on Wednesday morning, I felt like I was bombarded by the speech therapist (ST) and Micah's nurse. The ST seemed pretty upset that we had stopped using the nasal cannula for his feedings (to give him an extra dose of oxygen). One of Micah's nurses and I made that call on Saturday because he had been doing better (no desats while eating) and he seemed to dislike the nasal cannula so much (wouldn't you?).
Anyway... the ST and his nurse informed me that they were now supplementing his breastmilk with formula and that he wasn't to take any more feedings without oxygen because he wasn't eating well at all. He didn't perk up during the day. And yesterday morning he was not himself. He's usually pretty self-soothing but he was very fussy most of the day. And he didn't take anything from the bottle. He seemed like he had a belly ache. They ran a CBC and there are no indications that he has a virus or an infection. I've asked the doctors to consider whether the bellyache relates to the formula fortification or possibly reflux.
His cardiologist stopped by to see him around lunchtime. She thinks that his heart is working harder and that is the cause of his lethargy. She started him on two medications (low dose to start), with the option to add a third. She's a cut-to-the-chase sort of person. If Micah doesn't show significant improvement over the next week, then it's likely that we'll have to go back to Milwaukee for 3 days for him to get a G-tube (a tube inserted into his belly and it doesn't go through his nose; rather, it comes out his belly). It's a surgical procedure and due to his heart defect, he needs an anesthesiologist who specializes in pediatric cardiology.
A G-tube is something we had really hoped to avoid. But it's much more important that we get him home. As I said to the attendees in the meeting, he needs to be a baby. He needs to come home and see things other than the mobile over his crib. He needs to be able to use some of his energy to play, not just eat. Right now, we're not doing much interacting with him... we're trying to give him a break so that he can use his energy to eat. That's just not good for his overall development.
So, it sounds like we'll either be home in two weeks or on our way back to Milwaukee for a G-tube.
Today was officially Micah's due date, though my c-section was scheduled for 1/31. He entered the world back on 1/5. Here are some new photos:
Oma finally got a break from Nathan duty!
Nathan visited Micah by looking through a window to the family room (I was able to wheel his crib down to the room)
Micah's crib (pun intended)
We have a "Care Conference" coming up later this week where we will meet with the neonatologist, nurses, social worker, genetic counselor, speech therapist, physical therapist (?), and I don't know who else. It's sort of like a merging of the minds to make sure we're all on the same page with expectations. We can invite anyone we want (I might want to ask if Micah's cardiologist or a PA could be there). It's tough to know which of the four whammies are affecting his stamina most: prematurity, duodenal atresia, heart defect, or Trisomy 21. [By the way, I hate that we have that fourth one the most.]
Micah continues to improve gradually in his feedings. He tires fairly easily and eats best following a bath (he's super alert then). He weighs 7lbs 6oz. They've increased his milk intake to 66 cc's every 3 hours (60 cc's is equivalent to 2oz). I'm looking forward to our Care Conference to find out everyone's opinion on whether Micah is going to be able to take this sort of volume orally or if we need to get comfortable with the idea of a G-tube. His neonatologist was not ready to give in to that and wants to hold out almost at all costs. But he needs to come home sometime.
I'm very tired and therefore quite edgy. Mark has been sick with the flu since Friday so he's run-down too. Nathan's eyes are looking a bit sunken this evening and I just pray he's not getting sick.
Micah's PIC line was removed this morning. It's nice to be able to see his right foot! And we received a bit of information from his latest echo. Not much has changed in his heart situation except that the left side of his heart used to be a bit weaker than the right, but that is no longer the case. Most importantly, nothing has gotten worse.
I spoke with one of Micah's doctors this morning about the game plan. I basically asked how long we ride this out before he would need to get a G-tube inserted to be able to go home. He said a few more weeks. We'd rather avoid the G-tube if we can, so we'll wait and pray that he gains the strength required to orally take all the food they want him to take.
There was a nurse visiting the NICU today with her 2-week-old baby. Her due date was next week, close to mine. I was so jealous. There she was, visiting her co-workers to show off her new baby, same size as our little Micah, but in a car seat, with no wires, and out in public.
A dear friend of mine's father sent us a new devotional book (thanks so much, Brad). He first read my friend's copy, who received it from another friend of ours, who heard about it from her neighbor. It's a wonderful devotional that is written in first person from Jesus. It's called "Jesus Calling: Enjoying Peace in His Presence," by Sarah Young. I hope she doesn't mind me sharing yesterday's devotional here. It really spoke to me:
"Come to Me for rest and refreshment. The journey has been too much for you, and you are bone-weary. Do not be ashamed of your exhaustion. Instead, see it as an opportunity for Me to take charge of your life. Remember that I can fit everything into a pattern for good,including the things you wish were different. Start with where you are at this point in time and space, accepting that this is where I intend you to be. You will get through today one step, one moment, at a time. Your main responsibility is to remain attentive to Me, letting Me guide you through the many choices along your pathway. This sounds like an easy assignment, but it is not. Your desire to live in My Presence goes against the grain of "this world, the flesh, and the devil." Much of your weariness results from your constant battle against those opponents. However, you are on the path of My choosing, so do not give up! Hope in Me, for you will again praise Me for the help of My Presence." (italics hers, bold mine) scripture references: Romans 8:28; Psalm 42:11
It was a month ago today that Micah entered the world. He weighed 5lbs 6oz. Today he's up to 7lbs 3oz. He's doing much better with eating. He's getting a bit stronger and the antibiotics seem to have done their job because his blood work shows much improvement. And as of yesterday, he's no longer receiving any nutrition through his PIC line (hopefully the line will be removed in a couple of days). His milk intake is 2 ounces per feeding (every 3 hours). That's a lot for a little guy! He's getting another echo of his heart done later this week.
It's nice to be home. Here are some photos. The first is Micah's last visitor in Milwaukee (thanks for all your help, Julie). The second is of Micah "packed for transport" from Milwaukee to Neenah (he slept the whole way). The third is of Grammie and Pop with Micah in the Theda Clark NICU. The last photo is to show off Micah's funky hair and gigantic cheeks.
Looks like the infection control director's grandson has an infection. They haven't identified it yet, but he just had round #2 of antibiotics today. This could explain why Micah has been so lethargic this week. Last week he was much more alert. It's been much more difficult to wake him up for feedings, and he hasn't taken much orally. He seems capable of digesting whatever goes into his stomach, whether orally or through his NG tube. But the neonatologist decided not to increase his volume today. And he now has a nasal cannula back in because he has a lot more desats these days (where his oxygen concentration goes under 90%). He also has a lot of air in his stomach (the nurse can tell when she draws out from his belly before his feedings to check his "residuals" - how much is still in there from the prior feeding). I'm going to ask the dr about that tomorrow.
New NICU comes with new rules. One is that Nathan can't visit at all (in Milwaukee, siblings over 2 could visit... here it's over 4). Another is that Micah can only have visitors if Mark or I are with them (in Milwaukee, we could specify anyone who could visit Micah even if we weren't there). And we don't have a phone number so no one can reach us if we're there (in Milwaukee, there was a phone in Micah's room that was specifically the parents' phone). Two people called me in the NICU today and I was lovingly chastised before I left today that trying to find me takes time away from the babies. I was discouraged enough about Micah's lack of feeding progress. I didn't need someone telling me something I already knew and just needed to communicate to people. Seriously, folks, I just got here. Cut me some slack. Anyway, if you need to reach me, just call my cellphone and leave a message. I'll try to check it every three hours or so.
In other news... Nathan is quite happy to be home. He didn't even want to go to Grammie and Pop's house yesterday. On a normal day, he'll be halfway to the mudroom to get his coat if you start to say, "Nathan, do you want to go to Grammie and Pop's house?" But he was just too excited to be home and play with his trains and the rest of his toys.
We're going to try to get into a routine with visiting Micah. Our intention (on weekdays) is for me to go in around 8:45 and be there for his 9:30, 12:30, and 3:30 feedings. We'll skip the 6:30 feeding and give Nathan some sense of normal evening routine. Then Mark will go feed Micah at 9:30. That makes for a rather late night for Mark, though. I'd like to ask if they could change his feeding times to the tops of the hours. But that time slot is already taken by another baby so we may have to wait.
Welcome to our family blog. We have three boys: Nathan (7), Micah (4), and Matthew (3). Nathan is our energetic, sports fanatic first-born. Micah is our charming little guy, who happens to have an extra 21st chromosome (aka Down syndrome) and multiple associated health issues. Matthew is our big-boy-wanna-be. I started this blog the day after we found out that Micah has designer genes (Trisomy 21, aka Down syndrome). We've been through a lot of ups and downs (and a lot of time in the hospital), but God is faithful and continues to show His love toward us.