Game Day

It's a big day at the Northcutt's. It's the first college game day of the season, which means that now is the time to start molding Miles into becoming an OU fan. I realize the challenge is going to be a difficult one, given that his daddy loves the Longhorns, but I will be putting up a strong front for the Sooners, and I think the fact that Papu has season tickets gives Oklahoma the edge on winning Miles' loyalty. Nevertheless, here is a cute pic of Miles and Jeremy watching ESPN College Game Day together. The first of many I have no doubt.

Miles made his first trip to Starbuck's yesterday, and I must say he didn't seem quite as thrilled as I was. He was conked out the whole time. I even offered to get him a toffee nut latte or a blueberry coffee cake - but nothing. No excitement. Not one eye opened. Oh well. Other than that, we are still just working on his little internal clock. He actually does pretty well, but somehow he didn't get the memo that 4:00 in the afternoon is NOT bedtime and NOT the time for a marathon nap. It feels kinda mean to try to wake a peaceful, sleeping baby - but for his mother's sanity and well-being we need to get this straightened out. He's trying hard though, and he will get there before we know it.


This is pretty typical of Miles' playtime. All these fun toys right in front of his nose, but he'd rather make sure he knows what's going on all around him. Maybe he's going to be the next Jack Bauer.



He'll hate us later for these I'm sure, but how adorable is our little puppy?? I'm taking full advantage of dressing him up like this before he can really put up a fight. It's for the sake of the scrapbook. :)

Home Sweet Homecoming!

There's no place like home! After 3 weeks and 3 days in the hospital, finally our NICU days are over! Woohoo!


Miles was moved to CCN Friday afternoon and did great through the night. Dr. Rosenfeld decided to have him stay Saturday night as well, and early Sunday morning we got the call that we could come get our sweet baby! Jeremy and I were still asleep and actually heard the message being left on the answering machine, and when we did our eyes popped open and we were on our feet getting ready in no time. Here are a few pics of Miles' last few moments in NICU.


I've often wondered what outfit I would bring my first baby home in. When my nephew Lawson was born and I really started looking at all the cute baby clothes available in the world, I started wondering how anyone ever chooses. In the back of my mind for some reason, I had this image that the outfit was supposed to be delicate, soft, and mostly white with maybe some baby blue gingham or an embroidered bear on it somewhere. I know, seriously. But when Jeremy and I saw this onesie the other day, I just knew. Given all the obstacles Miles has been through and overcome in the last 24 days at Parkland, we thought the Superman insignia was more fitting.

So, how are we doing now that we have him home? Well, the last 24 hours have been fun (and LONG I can't lie!). My parents were in town this weekend, so it was fun for them to be able to see Miles in his new environment. Once they left, Jeremy and I definitely had that "Now what?" moment, but the thought didn't last too long as Miles has no problem letting us know if he has a need that needs tending. We have both been pretty exhausted today as we're working on establishing some kind of routine for him. But exhausting as it may be, we couldn't be happier to finally have him home, sweet home!!

We Can See the Light!

So, I know it's been a week since I've given an update. Sigh. Thanks for all the reminders to stay on top of it and for everyone still showing interest in Miles. I definitely had intentions of updating more often, but life has stayed a little hectic lately as you can imagine. I am back at work now until Miles is discharged from Parkland. I just couldn't stand the thought of using my maternity leave without my baby at home, so I asked to go back until that happens. It's definitely made each day a little more exhausting for me, but it's more than worth the weariness to gain that extra time at home with Miles.

He's getting so close! The next couple of days after my last entry were still rough as far as feedings go, but over the weekend it was like the lightbulb came on. He is breastfeeding exceptionally well and taking his bottle without any struggles now. In fact, on Sunday Jeremy was holding him and Miles got one of his little fingers around his feeding tube and just pulled it right out! It was like he was saying, "Here you go guys. I won't be needing that anymore!" His primary nurse decided she wouldn't put the tube back in unless she absolutely had to, and guess what? It's been out ever since!! He's taking full feeds every time with absolutely no problems. Yay! They also moved him to a new room at the end of the hall. It's really a room for chronic babies who have been in the NICU for months, so the room is a lot more quiet and most of the babies are in real cribs and have toys and bouncers to help with their development. At first I was worried that this meant they were anticipating that Miles would be in NICU for a long time, but I was quickly reassured that he was moved because a spot happened to open up and they just thought it would be nicer for him. And it is!! Not nearly as many beeping alarms and whistles going off, and it's a lot more private for us as well.

They continued to wean him off the Methadone slowly over the weekend, and today they discontinued it completely! Dr. Rosenfeld caught me on my lunchtime visit this afternoon and had a big smile on his face and told me that "Miles is doing great!" He said they will monitor him for the next 48 hours to make sure he does fine completely free of the Methadone, and if he does well they will move him to CCN (Continued Care Nursery). This nursery is actually outside the NICU, and is for babies who just need to keep eating and growing. Dr. Rosenfeld said a couple days in there and approval from Miles' cardiologists and he'll be good to go! Praise God! Like we've said before, Dr. Rosenfeld is very conservative. So to see a big smile on his face and to hear him tell me to get Miles' bed ready at home - well it felt like he was telling me we had just won the lottery! But this is so much better! We can't wait to be overwhelmed at home with a new baby to care for.

Week 2

This week we have experienced some other firsts...

I'm most proud to say that Jeremy changed his first diaper! Go Dad! I don't know what made him do it, but he stepped up to the plate Monday night and was a natural. :) Yeah, so he got lucky with just a wet one, but seriously I was impressed at his skills! Of course I had to capture the moment with a pic. He's definitely hired!

We also get to bring clothes for Miles now. So all the cute little things that have been waiting for him at home are now making their way to Parkland. Not exactly what I had in mind, but a way for us to bring home to him since we still can't bring him to home. And to answer the question everyone is asking (including us), we still don't have any idea when that day will be. It just depends on how quickly he can wean off the Methadone and start taking full feeds every time by nipple. Good news is that his withdrawal scores have stayed low enough that he has now gone from 4 daily doses of Methadone to three. They will continue to score him and once those scores stay low for a few days they will wean him again. He is feeding better - not much regurgitation but he's still pretty picky about when and how much he'll take by nipple. Sometimes he eats like a champ, and other times he eats half and then becomes disinterested or sleepy. So then of course they have to gavage the rest.

As for Jeremy and I, we are holding up. We trust in the care Miles is getting, but it's now been two weeks in NICU and it's frustrating not having any sort of idea how distant the light at the end of the tunnel might be. In the beginning Miles' was taking major steps forward every single day it seemed, and that kept us so encouraged. Now it's tough because the signs of progression are a lot more difficult to see, and we just have to ride out the storm. And for me, that storm gets stressful as you sit and wonder when the thunder is going to clap again. Is he really just withdrawing? Could his symptoms instead be neurological? Will he recover completely? It's draining, I can't lie. But with all that said, at the end of the day we still believe with our whole hearts that Miles is one of God's many blessings for us and we trust and pray that He will heal him completely. Here are a few pics from the other night when Miles was wide awake. He is such a joy!

New Room!

Miles upgraded to a room in the Acute Care Nursery! Basically there is a hierarchy of nurseries within the NICU. Intensive Care Nursery, or ICN, is where he was previously and this is the nursery for the babies who require the most care. Usually these babies are hooked up to ventilators or are unable to feed and require nutrition through umbilical lines or IVs. The next step up is the ACN, where Miles is now. This is for babies who are line free and off the ventilators. Miles got his last IV out this morning, so now he is completely off of all fluids. They are starting to nipple feed him some, but the feeding tube is still there as backup when he won't take to a bottle. As I mentioned in the last entry, the nurses have started scoring him for withdrawals from the two sedatives he was on, and his scores were high enough that they now have him on a drug called Methadone that should make him more comfortable as he comes down from those. After a few days if his scores are much lower they will drop a dose of the Methodone - right now he is getting 3 doses a day. It seems to be calming him down, but it also makes him very sleepy and they attribute that to him not eating from a bottle every time.

I gave Miles a bath yesterday - my first time to do it! I just knew he was going to scream the whole time, but suprisingly he only fussed a little when I took his diaper off. Once he was in the warm water he calmed down and stayed awake and just looked around the whole time. Of course, it was a pretty major scene as there were two nurses there to help me make sure his IV didn't get wet and to guide me through the best way to bathe him and hold him at the same time! I'm not really sure how clean he was at the end of it all, but I loved feeling like a real mom to him. Jeremy even stepped in at one point and washed his hair! And of course he had to style it into the faux hawk like his own (when he's not buzzed). Needless to say, Miles is a cutie and evidently gets LOTS of love from the nurses...

CPAP Free!

We finally got to see Miles' bright and shining face free of all tape and tubing! Well, almost. They moved his feeding tube from his mouth to his nose, but he is completely off the CPAP and his breathing and gas levels have been good. I couldn't seem to look at him enough, and Dad went camera happy as you can see. This was a big day for us to finally see Miles' little face completely. Of course we think he's beautiful, and he was awake for a good 20 minutes or so which is the most alert we've ever seen him. Also, when we left last night they were about to take out his UVC, which is the last line that was going to his artery through his umbilical. Yay!!


Unfortunately, not all the news is good. Miles is showing signs of withdrawals from the two sedatives he was on. He has the shakes, he is not showing much interest in sucking (although he will take a paci for a minute or two then spit it out), his breathing rate per minute is higher than they'd like, and he started vomiting yesterday after his feeds. So they have a way of scoring the symptoms of withdrawals and began doing that last night. When I called this morning his scores were a little high. We were told that if they are high they will probably put him on another medication to help him come down off the sedatives slower than just quitting cold turkey. Most of us know someone or have at least seen on TV how uncomfortable and difficult it is for someone who is going through withrawals from medication. While we hate the thought of Miles' going on another med, we also don't want him to suffer coming off the sedative. So of course we will do whatever it takes to make sure he's not in pain.

These pics are my favorite yet! Everyone says he looks like Jeremy. I was holding out at first, but now that I can see his whole face - I guess I'll concede. He's such a little sweetheart! But he does have a set of lungs we found out... :)

Happy One Week Birthday Miles!

It is late morning as I'm writing this, and as of right now we haven't made it to the hospital yet to see Miles. Since I am unable to drive just yet, a typical day has been for Jeremy to pick me up sometime after lunch and we head over to Parkland. He comes up for a quick visit and then leaves me for a few hours while he finishes up afternoon appointments and what not for work. Then he comes back, we stay a bit longer, go home for a couple of hours, and then back to Parkland around 8:00 p.m.

I always call in the mornings to check on Miles, and as of early this morning there weren't many changes and the doctors hadn't made their morning rounds yet where they discuss the daily plan for each baby in the NICU. So hopefully I'll have more good news to share later in the day. But Jeremy and I are thrilled to be celebrating Miles' one week birthday today!! No doubt it's been the longest, most emotionally rattling week of our lives to date, but we are just so thankful for our new joy! I thought I'd post a few more pictures we've taken of Miles over the last week.

August 6, 2008

Miles is so sweet! He looked visibly better yesterday and today than two days ago. The swelling has gone down some in his little face, and yesterday he was fed a small amount of breastmilk for the first time through a feeding tube (see picture). He is proving that he is able to tolerate it, and today they went up on his dosage and started to wean him off the TPN and lipids. So, I am diligently pumping at home and taking all the frozen milk up to the NICU when we go so that they have plenty in stock for his feedings. If all goes well at his feedings tonight, they may take the line out of his umbilical cord that is giving him those other fluids. Last night they took the first of the two lines out of his umbilical cord. So he's almost line free from that site!! They have completely stopped both sedatives, so we can see him slowly coming off of those. The last two days we've seen him, his little body has the shakes, but the nurses say that's normal for someone coming out of sedation and it just takes time. But tonight he was the most active we have ever seen yet! When we arrived for round 2 at the hospital, the nurse was giving him his first bath and he was NOT liking in one bit! :) She gave him a good scrub and washed his hair, and I'm telling you that when his hair is dried it was blonde!! What? We kinda knew it had a blondish tint in the light, but until tonight I guess it was still kind of matted down and sweaty and I swear looked brown. He had his eyes open too and kept them open longer than we've ever seen. It was the cutest moment, but wouldn't you know it was the ONE visit we forgot the camera!! Aw! He is repsonding well to touch now and makes little faces with his mouth. It is such a joy to see those little signs of life! He is breathing room air now, and today they took him completely off the nip-v, which is what was giving him those 10-15 breaths a minute if he needed help. So he is on CPAP only which is just a little flow of air through the nose tube that puts a little pressure on him to breathe. But he's getting no help other than that, and so far his blood gases are coming back with the CO2 levels decreasing which means he's starting to clear it fine on his own. Hopefully in the next day or two he will have the breathing tube completely out.

Oh, I got to hold him for 2 1/2 hours both yesterday and today while Jeremy did some work. It's the best feeling (even though machines beep all around me and alarms go off sporadically and nurses and doctors in and out constantly - there are several other babies in his room, so not a lot of privacy but Miles and I just learn to create a little bubble around us and we still bond :))! Jeremy holds him at night when we go the second time, and he loves it too. He's going to be a terrific dad! Although he hasn't jumped on a chance to change a diaper yet...

August 5, 2008

Update on Miles...

Yesterday around noon the breathing tube was removed from his mouth, but they replaced it with a breathing tube through the nose as he still needed a little help. When we breathe oxygen, we breathe out CO2 and he was having a little trouble clearing that CO2 to the doctor's standards. He is coming down off the sedative he's been on for several days, which still has him somewhat sleepy so he also just needs a little extra help from the tube to help him remember to breathe. No ideas when that can be removed, but it is a lot less invasive through the nose than down the throat. So, even though he is still pretty out of it, I have to think he's more comfortable even though it's still not pretty and covers most of his little face. As far as nutrition, he's still not eating but he's off the sugar water now and being given TPN and lipids through the IV. TPN has vitamins, calories, and nutrients - so a little more substantial than the sugar water. We don't
know yet when he can start taking breastmilk, but we've been told that it will first be through an IV until he can be off the breathing tube.

I know that's a lot, but the doctors still say that he is progressing well but it will take time. Our theme for all of this is "Hurry up and wait." That said, when I'm there the nurses let me change his diaper and take his temperature. So I love how that makes me feel like a real mother and not a helpless bystander. We also got to hold him for the first time yesterday! It was quite an ordeal bundling up all the intimidating cords and tubes, but his nurses are wonderful and seemed more than happy to help him get into our arms. It was so hard to give him back even though our arms were going numb and we couldn't rock or move him much :)

I was discharged yesterday, and I'm doing fine. The hardest part is just being apart from Miles, but he's in good hands and that's comforting. Thanks again to everyone who's been thinking about us and praying. We know that God's plan is being played out, and we find comfort in knowing that He's in control of all this.

Day 4 - August 3, 2008

Miles is continuing to improve. They machines are giving him only 50% oxygen, which is a big improvement from the 100% he was receiving initially. We've been told that once he gets down to 30%, they will remove his breathing tube. We are looking forward to that day because that is the day that Jeremy and I will be able to hold him for the first time. We are extremely encouraged and it looks like it will just take time for him to get better. Miles' attending physician, Dr.Rosenfeld, seems to be the most conservative in giving good news. But even he has said that unless Miles takes an unforeseen step backward, he is well on his way to being healthy. Interesting fact about Dr.Rosenfeld: Evidently he is a very well-known neonatal intensivist who has seen over 300,000 babies in his 35+ years at Parkland (he was there they day they brought JFK in after he was shot). He said he has never seen premature closure of the ductus, and could only find two case studies on it. It is something that has been studied more on animals than infants, so they are having to feel their way through this and use a little bit of gut instinct to know how to treat Miles. We are not being given a time frame at this point on when Miles will be able to come home. It was encouraging last night to see him more active - Jeremy and I saw his eyes open for the first time! Here is a picture we were able to get using night vision on our camera. We like to think he even smiled at us a couple of times, but even if it wasn't truly a smile it sure made us light up!

I am scheduled to be discharged tomorrow. I'm feeling fine. Thanks again for all the emails, phone calls, flowers, goodie boxes, and encouragement over the last several days. It's meant a ton!

Day 2 - August 1, 2008

First of all, thanks to everyone for your thoughts and prayers for baby Miles. He progressed well through the night and his "levels" are improving. The pressure in his lungs is very slowly decreasing and his blood oxygen saturation is increasing. He is on a ventilator, which is providing him 20 breaths a minute. He is breathing slightly over that, which means he is doing some of his own breathing. The picture you see are ones we took in the middle of the night when we went to see him. You'll see the breathing tube coming out of his mouth, and he also has two lines attached to his umbilical cord. This is where all his fluids are going through - he's on two sedatives to help calm him down and right now they are giving him sugar water which is also flowing here. These lines also serve as a place for them to draw his blood so that they don't have to stick him all the time. There is also an IV in his right hand and I can't remember what goes in there. You'll also see the little yellow earmuffs - like I said before, he's been awfully feisty, so the sedatives and earmuffs are to help calm him.

We hope you'll take time to stop and thank God for his blessings on Miles. Please continue to pray for his recovery, but we have been able to spend precious time with him much sooner than we thought possible. The doctors who looked at Miles' heart beforehand were preparing us for the worst, and their very words were that they were "extremely nervous" about our baby, but God is great. Thanks for being part of this with us.

Miles Walker Northcutt

Miles was born this morning, July 31, at 8:46 a.m! He weighed in at 8 lbs, 6 ounces and was 20.5 inches long. He has lots of hair and chubby cheeks. The operating room was full of doctors awaiting his arrival. We learned after his birth that there were 8 doctors present just for Miles, and then 3 in the room for me. Upon delivery, we heard him let out about 3 or 4 little cries and then they took him into one corner of the OR to stabilize him. We were told that he was very blue when he was born, so they put a breathing tube down his throat, started giving him oxygen, and he "pinked up" after that. We were also told that he was extremely "vigorous" so they had to sedate him. They did a 5 minute echo-cardiogram on his heart to quickly try to determine his needs. So many doctors kept coming to our bedside while my OB was stitching me up to give us small reports. First it was that they were going to wisk him away to Children's Hospital immediately, then 5 minutes later another doctor told us that they decided to take him to the NICU at Parkland first before taking him over to Children's, and then another 10 minutes later they determined that he was stable enough that they were going to leave him in the NICU at Parkland until they did a more extensive echo later that afternoon. Each report was a little better than the last. I'm telling you, to hear those little cries was the best sound I've ever heard, because it meant our baby boy was alive! And finally, they brought him over to me as I was still on the table to let me have a tiny glimpse and to kiss his forehead before taking him away to the NICU. Jeremy and I were both overjoyed, to say the very least. Our baby was alive!

Around 4:00 that afternoon one of the cardiologists came in to our room to give us the best news in the world. Our baby's heart was fully functioning!! The official diagnosis was that he had premature closure of the ductus arteriosis. Here is a link that Jeremy found which describes it. http://www.thefetus.net/page.php?id=1071 Personally, I find it hard to understand, so here is my interpretation. Basically the PDA is one of two holes in the heart of a fetus. These holes are completely normal in every fetus, as they serve as a bypass for the flow of blood. The normal function of the right side of the heart is to pump blood to the pulmonary artery and out to the lungs. Since fetuses don't really use their lungs until after they are born, there is no need for the blood to flow to the lungs until after birth, so the PDA allows that blood to bypass flowing to the lungs while the baby is in utero. Upon birth, the PDA closes. This closure allows the high pressure in the lungs to drop immediately, and all the pressures and blood oxygen levels reorganize as infants take their first breath. In baby Miles, his PDA closed prematurely while he was in utero, and this caused that right side of his heart to work extra hard to try to pump blood through his pulmonary artery and out to the lungs. That is ultimately what caused it to become enlarged. Because his PDA was already closed, and because there is high pressure in his lungs (which should have normally fallen immediately upon birth as the PDA closes), it is called pulmonary hypertension. In a nutshell, after an extensive echo the cardiologists are saying that his heart is functioning normally - the holes are closed, and no arteries are blocked or narrowed. Instead, his sickness is the pulmonary hypertention that was caused by the premature closure of his PDA. Clear as mud? That's the best I understand it, but of course I may have some of that screwed up. So if you're a doctor and reading this - I'm sorry!!

Anyway, his heart is healthy. Praise God! Now we just need the pressure in his lungs to decrease and his blood oxygen levels to increase. The more the pressure in his lungs decreases, the less strain there is on his heart and it will be able to heal faster (remember his right side is still enlarged even though it appears to be functioning normally).

Tuesday, July 29, 2008

Today we learned that our unborn baby boy Miles has a congenital heart defect, but we won't know the extent of the defect until after he is born. Because he is so far along (38 weeks) and considered full term, the doctors are unable to get a good look at all the angles of his heart to be able to pinpoint what is causing the problem. What they see is that the right side of his heart is very enlarged compared to the left. The pediatric cardiologist who looked at the sonogram today told us afterwards that he is "very nervous" about our baby and that he will be born very sick. We've pretty much been given possible scenarios ranging from A to Z - everything from something that can be treated with medication to a defect that he will not be able to survive. And then everything in between, with the possiblity of a transplant somewhere in the middle. However, the outcome he did not mention, and what we are praying for, is that Miles will be born with a fully functioning, healthy heart. We believer our Savior can move the mountains, and that is what we are asking. We are asking that we will be able to hold our son alive soon after his birth. Either way, we know that our God's will is perfect and that His name will be glorified no matter the outcome. Miles will be born on Thursday, July 31 between 8:00 and 8:30, via c-section, at Parkland Hospital. I am delivering at Parkland so that he can be transported immediately next door to Children's. The plan is for him to be stabilized in the delivery room, with the cardiologists from Children's on hand to determine his needs, and then he will be taken over to Children's.