Sunday, November 4

Last day in NICU

Last day at hospital

Eating at home!

SO CUTE!! Love those big, bright eyes

Ashton's signature look

Friday, November 2: Four Weeks Old

Well, it's been a long time since I've updated the blog! It's been a busy but great couple of weeks. We took Ashton home on Friday, October 19--exactly two weeks from when he was born. It was so nice to finally have him home! He came home on oxygen, and he's still on it, although it's barely even anything. We're weaning him off of it, and he's doing really well. He can actually last a couple of hours without it now before he starts dropping on his saturation levels. We're really hoping to have him completely off of it this next week.

Having Ashton home has been really great. I almost feel like we missed parts of his life in the beginning since we weren't able to be with him all day and night. I love having him here and being able to get to know him better. It's funny, because I always thought that newborns were a little boring. I didn't think they had much of a personality, and that all they did was sleep all day. I couldn't have been more wrong! Ashton has tons of personality. When he gets hungry, he is ravenous and gets really aggressive. He throws his head from side to side and growls and grunts, and it's almost impossible to get the bottle in his mouth, let alone get it in right with his tongue in the correct position. We've also learned that, unless he's completely out of it and in too deep of a sleep to care, he can't fall asleep unless his feet and arms are free and out of the blanket. He hates having his legs and arms bundled up. He's pretty much adorable :-)

One of the funniest moments for me since we've brought him home happened when we were giving Ashton a bath one night. I was holding the towel and as Kirk was handing him to me, Ashton started peeing. A fountain of urine went all over Kirk's chest and stomach. I could not stop laughing, and for the rest of the night I would just burst out in giggles every time I thought about it. So far, he hasn't peed on me, but he has done a few nice numbers on our sheets, quilt, and bedspread. That kid has great bowels!

We took Ashton to the pediatrician for the first time two weeks ago, and he weighed 6 lbs 2 oz. Then, we went back one week later and he was 6 lbs 15.5 oz! I can't believe how fast he's growing, and now he's four weeks old and I feel like the past month has just flown by. Pretty soon, he'll be walking and then talking and then, before I know it, he'll be graduating high school! I wish he could just stay like this forever--an adorable, innocent little baby.

The past few weeks have definitely been pretty exhausting, and I feel like I'm running on adrenaline with some added energy in the form of Mountain Dew, but I wouldn't trade it for anything. Some nights I actually look forward to waking up multiple times in the middle of the night to feed Ashton and change his diapers (I'm pretty sure that will wear off soon enough). Ashton has been such a blessing in our lives, and has brought so much joy to us already in the short amount of time he's been with us. We love him so much, and I'm so excited to watch him grow and get stronger (and cuter) every day.

Tuesday, October 16: Learning to Eat

Wow, I'm a slacker! It's been a few days since I've updated the blog, but not much has really changed. Oh ya, except that I've become Ashton's personal milk cow, always armed and ready at his beck and call. :-) We could actually take him home right now with the oxygen he has (there is a possibility that will happen), except that he has to be eating completely on his own first. And we're getting there! He's been doing so well the past few days, and he's continually getting stronger and building up his endurance for his feedings. He usually does really well with the bottle, but he's starting to get the hang of breastfeeding, too. At the rate he's going, it might only be a few more days until he gets to go home!

Oh, yesterday Ashton had his first bath! His nurse said that he didn't really like it at first, but that by the end he was really loving it. So now he smells all yummy and fresh :-) Truth be told, I actually preferred the way he smelled before the bath...he still had that really sweet, newborn smell. Sometimes when I'm holding him I seriously just sit there and smell his head, and I can't get enough of it!

Yesterday, Ashton also passed his hearing test on BOTH ears!!! Yay! In related news, over the weekend he also peed on his face and into his mouth. I could not stop laughing as the nurse was changing his diaper, because he did NOT like it when that happened. The nurse probably thought I was mean for laughing so hard, but I couldn't help it...it was too funny to watch his facial expressions.

I'm convinced that being a NICU mom is more time-consuming than if I were to have Ashton home with me. I'm not saying that new moms who get to take their babies home right away have it any easier, but as we've moved into the learning-to-eat phase, I'm having to be at the hospital all day, every day. It usually takes me an hour to feed him, since first we try breastfeeding and then after we usually have to supplement with a bottle. It's quite a lengthy process--especially when you factor in the time it takes to undress and redress him with all of his cords and tubes and such. Then I have to pump afterwards, which takes about half an hour when it's all said and done. By that time, I have just a few minutes to either run home and grab something to eat, or take a quick, 10-minute nap, and then I'm running back over here to do it all over again. And I can't sleep at night for more than six hours, because I have to pump. And there's no point in going back to sleep after, because by the time I'm done I'm either not tired anymore, or I don't have enough time to go back to sleep before having to be here for rounds that morning. It's pretty exhausting!! But he's definitely worth it. Hey, at least I'm getting six, really good hours of deep sleep since I'm too tired to ever wake up during the night, right?

We're hoping that by this weekend, we'll be able to finally take our sweet baby home!

Friday, October 12: Out in the Open!

Ashton graduated from his incubator today! I was so tired yesterday from being at the hospital all day and not getting much sleep because of having to pump (which is why I didn't blog last night), so I didn't make it in to see him until almost noon today. When I got here, our nurse was super excited and said she had a surprise for me. I went in his room and he was out in the open in a little bassinet, and he also had a much smaller cannula (oxygen tube) in his nose! So he has hardly any oxygen support. We're super happy about that :-)

We're also trying to breastfeed some more. He tried once yesterday and twice today and is doing much better, but he still has a ways to go before he can get his feeding tube taken out. But once he learns how to eat, he can go home!

Not much else has happened since Wednesday...We're still waiting for the chromosome tests to come back. We got a basic report, but it didn't show anything, so they're running a different, more in-depth test to see if they can find anything. We also got the biopsy results back from his branchial clefts (if that's for sure what they are), and all it said was that they aren't sinuses/cavities as we had originally thought. So tomorrow the doctor is going to take a look at the results and see if he can find anything more significant so that we can have a better idea of what we're dealing with. But it sounds like the biopsy didn't really reveal very much.

Kirk and I are definitely starting to feel the effects of being at the hospital day and night, and these last couple of days have been exhausting. I never knew how tired I could get from constantly pumping, trying to get Ashton to breastfeed (and learn how to myself), and then running to and from the house to eat and such. I'm hoping it will get a bit better once he's home, but I'm not really counting on it! I guess they weren't joking when they said that being a mom is the hardest job in the world...but I'm convinced that it's completely worth it!

Wednesday, October 10

Wednesday, October 10: He Can Hear!

Today was such a good day!!! Ashton was given a hearing test this morning, and they basically set him up to fail so that they could make sure the audiologist would make it a priority to get in to see him. And guess what? He passed in his right ear!! We're so happy about that, because even if he has hearing problems in his left ear, at least he has one good ear! They think he may have fluid still in his left ear, which could be why he failed. But it's very common for newborns to fail the first test, so we're not too worried about it. The biggest reason we're so happy about him passing is because that rules out so many syndromes, since a lot of them have hearing loss associated with them. So the audiologist will come in tomorrow afternoon to examine his left ear and make sure there aren't any internal defects. Fingers crossed!

Ashton was also lowered on his respiratory support to only 3 liters of oxygen, which means he can start to try breastfeeding (which means no more tubes down his throat)! So we tried that today a little bit, and I couldn't help laughing the entire time because he looked so confused and was very hesitant about it. He definitely has a weak suck, and he only got a couple of drops in (the rest was all over me, thanks), as he was mostly just sucking on his bottom lip the whole time. But he acted like he really wanted it, and so hopefully we'll try again tomorrow and make some progress. He was super cute during the whole thing, though, and was very comfortable and relaxed. Even though he doesn't have any more tubes in his mouth, he now has his feeding tube in his nose, since he obviously still needs it.

Tonight the ophthalmologist came and looked at Ashton's eyes. Kirk and I weren't here, because the nurse advised us that we might want to sit this one out. They had to clamp his eyes open and even though his eyes were numbed, I guess even the nurses have a hard time watching. But we're told it went very well and that she didn't find anything wrong! That means we can rule out a few more syndromes!

We are just so happy with all of the progress he's made today, and it finally feels like we're nearing the end (well, the end of the NICU at least). He has come such a long way in the five days he's been here, and we know that it's because of all the prayers that have been offered on our sweet Ashton's behalf. Thank you, thank you, thank you!

P.S. Oh, and our nurse today told us that most kids who are born with a white/blonde patch of hair always have it. So basically, Ashton will be the coolest kid ever because he'll have two different hair colors!

Tuesday, October 9

Blue lights! 

Real men wear pink :-)

He is just so yummy! Cutest ever!

Tuesday, October 9: Back to Reality

Well, Kirk had to go back to work today. I guess the world didn't stop spinning just because we haven't had a life outside of the hospital lately! I think it's good for him though to have a break and be able to focus on something else for a little bit. So I'm staying with Ashton all day. Today he is under the famous blue lights for jaundice. He looked a little yellow yesterday, and when they tested him this morning his levels were borderline, so they just decided to get it under control now and hopefully he'll just need it for today. I sure hope he's off it tomorrow, because while he's under the bili-lite we can only hold him for a half hour :-( Boo.

This morning the geneticist came by to examine Ashton...something that for me, at least, was a little stressful. It's not very fun to hear about all of these different syndromes he could have that could cause developmental delays, hearing loss, etc. To me, he's absolutely perfect, and the only thing wrong with him is that he has the branchial clefts and nevus sebaceous--both of which can easily be surgically removed. I don't want to think about the possibility that my perfect baby could have poorer quality of life due to hearing loss or mental issues. The good news is that so far, all of the ultrasounds have come back normal. That means that if he does have some type of syndrome, it's probably not going to affect his health at all. And that's a blessing.

The ENT (ear-nose-throat) specialist also came by today to examine Ashton. He wasn't able to give us much information, as everyone is kind of having to wait to see if he has anything genetically wrong with him before figuring out what to do next, but he was able to let us know that he strongly recommends waiting until Ashton is 3-5 years old before removing the branchial clefts. Depending on how far into his throat they go (which they won't know until they remove them), they might be having to go around important arteries and nerves, and that's pretty difficult when they're so tiny. So at least we know that for a few years, we'll be having to care for them and prevent infections by keeping them clean and such. The ENT will follow-up with him every so often and he'll teach us how to do all that fun stuff. Also, the dermatologist came back today to do a biopsy on the branchial clefts to determine what kind of tissue it is. That will confirm that they are in fact branchial clefts, or let them know if it happens to be something different. And by the way, it was not fun watching them numb him and listening to him cry. But he actually did really well and calmed down really quick afterwards.

So it looks like we're all just anxiously waiting for the genetics results to come back! Everyone's kind of in limbo until we know something, so it will be so nice when we have a definitive answer. Our neonatologist said that he's asked an ophthalmologist (weirdest spelling ever) to come and make sure that everything looks good with Ashton's eyes. Just something else we can hopefully rule out in this genetics puzzle. So Ashton's family now consists of a neonatologist, dermatologist, geneticist, ENT specialist, and now an ophthalmologist! What a great team! Only the best for my sweet little baby :-) And now we sit back and wait (rather impatiently) for tomorrow, when we get the hearing test done! We're praying for good news, but we'll deal with whatever the outcome is. The important thing is that Ashton is here and is doing much better, and that's all that really matters right now.

Monday, October 8: Three Days Old

Today Ashton is three days old. It's crazy to think it's only been three days since he was born. So much has happened and we've been physically and emotionally exhausted, so the days have just blended together into one big mess. It's hard to keep track of everything and try to remember which doctor said what and what they think is going on now--it's pretty tiring!

Today the dermatologist came by to look at the red sore on his head. She is pretty sure it's a nevus sebaceous, which is defined as being a congenital, hairless plaque that typically occurs on the face or scalp (thanks, Wikipedia). Kirk's brother was actually born with a smaller one on his head, and his hair around it just covered it as he got older. It's something we can definitely have removed later on, and it usually doesn't develop into anything serious. However, the doctors are a little concerned about it just because of the fact that Ashton also has branchial clefts, a patch of white hair on his head, a possibly underdeveloped jaw, and a slightly abnormal ear. All of these together may point to some syndrome, but they aren't sure what. And there's a chance that they could all be independent of each other. The jaw may actually be fine and he may just be really small and hasn't grown into it yet; the nevus sebaceous could be hereditary, as could the patch of white hair; and the branchial clefts could have just been a random mutated gene. But doctors like to connect things and have an actual diagnosis, so they are just trying to rule out anything that could lead to potential problems in the future--and that's great that they're being thorough. It just makes it a bit more stressful to us as we have to listen to all of these scary disorders and syndromes that Ashton could have. We just want to know what, if anything, is wrong with him so that we can deal with it and figure out where to go from there. Not knowing is definitely the worst.

They also did an ultrasound of his kidneys today to make sure everything was ok there. Kidney problems have been associated with syndromes that include branchial clefts, so they wanted to make sure there was nothing abnormal there. Everything looked good, which is awesome since now we can start ruling certain things out. We have this huge puzzle, and every piece helps us figure out how to put it together!

Ashton is continuing to be weaned off his respiratory support, and he's getting stronger and more active every day. He'll probably have a hearing test on Wednesday, which is something we're very anxious to have done since we aren't quite sure whether he responds to noises or not, and hearing issues are often associated with branchial clefts. So we're very anxious to get that test done so that we can hopefully cross that off the list! We appreciate everyone's support and ask that you continue to include our sweet Ashton in your prayers!

Sunday, October 7

Eyes open!

Sunday, October 7: Making Progress

Ashton is doing so much better today! He's slowly being weaned off of his respiratory support, and he's really starting to like being fed (he must be my child). He's started to fuss a little about 10 minutes before his scheduled feedings, so that's a good sign! He's also becoming more active and alert and observant of what's going on around him, and he's been opening his eyes quite a bit today, which has been really fun :-)

Today they did a head ultrasound to make sure his brain looked like it had developed normally. Everything looked structurally normal, but we obviously won't be able to tell if there's any development delays until we either find out through the chromosome tests that he has a genetic disorder that causes development delays, or we start to notice delays as he grows. But right now it's looking good, so no reason to worry just yet (easier said than done). 

Today was the first time I did skin on skin with Ashton, and I absolutely loved it! I think he did too, because he was super relaxed the whole time and his respiratory rate was at an all-time low which was awesome. I know I keep saying that he's such a sweet baby, but seriously, he really is. Hopefully things continue to progress--we just have to take it one day at a time. 

I was discharged from the hospital today, so I got to go home and see my finished house for the first time! My family did such an amazing job at getting it all cleaned and organized, and I'm so thankful for all of their help. As nice as it was, though, it was hard leaving Ashton at the hospital. When you have a baby, you're supposed to be able to take him home with you when you leave. Luckily our house is only 3-4 blocks away from the hospital, so it's not hard to go over anytime we want. That's definitely been a blessing, and Kirk and I are so grateful to everyone for their thoughts and prayers. Know that they're working!

Saturday, October 6

First time holding my perfect little angel :-)

Daddy holding Ashton for the first time!

First family photo....precious!

Saturday, October 6: Holding Ashton

Well, today was a much better day. Ashton is already looking better, and you can tell it's easier for him to breathe. We were super excited today because it was the first time we were really able to hold him :-) He is SO sweet and perfect! He rarely fusses, and when he does get upset he just scrunches his face as if he's preparing to scream and then he'll relax again and he's fine. Gotta love a happy baby!

So today they sent off some blood to Primary Children's to test the chromosomes and see if they show any chromosomal abnormalities (which would mean a genetic disorder). The soonest we'll get those results back is next Friday, but it might be into the following week. Then they did an echo of his heart to make sure it looked normal (they're just trying to rule things out), and the preliminary results were good and didn't show anything out of the ordinary. They sent a copy to Primary Children's for a second look just to make sure, but things are definitely looking up! We're so grateful for all of the prayers and support from everyone--especially to our family, who has been working non-stop to get our house ready for us! Thank you thank you thank you!

Friday, October 5

My poor baby...first night in the NICU looking so helpless

Friday, October 5: Happy Birthday Ashton!

Well, today was full of surprises! Yesterday I went in for my weekly prenatal appointment and my blood pressure was pretty high. That, along with my super swollen ankles and protein in the urine signaled that I had toxemia (preeclampsia), so the doctor sent me straight over to Labor & Delivery for an "evaluation." When I got there, I learned that an evaluation meant that I was going to be admitted for a 24-hour urinalysis, and that they were planning on inducing me in the morning (today). That definitely triggered a lot of emotions, and I became very stressed as I thought about our house that wasn't even close to being unpacked yet, and all of the things we still had to do to get ready for baby. I had thought we still had 4 weeks left! I guess I should have listened better when every week I would be sent emails that told me to start getting things ready in case something happened and the baby came early, huh?

So back to today. I was started on Pitocin at 8 a.m. and was told that it would take 12-48 hours to actually have the baby (and I had been so naive to think that it would only take 3-4 hours). Well, when I heard that, I decided that I wanted an epidural. So, they sent the anesthesiologist up about an hour later. When he got to my room, he informed me that he probably wouldn't be able to give me one (what???). Upon examining my back, he told me that there was too much scar tissue from my surgery (not to mention all the hardware) for him to feel comfortable finding the space to put the needle. He said that if he couldn't find it and went too far, he would hit my spinal cord, and we all know that's not good. So the only choice left was to go natural! At this point, I was a little overwhelmed with everything, so this just added to the list and I figured I'd just have to get through it and hopefully it wouldn't be too bad. I was definitely wrong about that!

I could probably write a whole page on how painful it was and how much I wanted to just die and not have to go through the pain anymore, but I'll just skip those boring details and get to the good stuff...like when Ashton finally made his appearance! It actually ended up only taking 8 hours for me to have Ashton (emphasis on only), and we were all pretty surprised at how fast I went from an 8 to pushing him out. The doctor barely even made it in time! When he came out, it was instant relief. I wasn't going to die! I was finally done! I held him for a few seconds before they cut the cord and took him away to look at him and make sure everything was alright. This part is a little hazy for me as I was a little detached and distracted trying to get back into a normal state of mind. But apparently the doctors noticed that Ashton was having a little trouble breathing, and he showed some signs of physical abnormalities that raised some concern. So they took him to the NICU, and Kirk and my mother-in-law, Nanette, went with him.

When Kirk and Nanette came back, they had a couple doctors with them. Dr. Eggert, the neonatologist, told us that there were a few things that were causing them some concern. One, his lungs, which is a normal problem for preemies, since the lungs really develop between 37-39 weeks (he was born at 36). Second was that he had two red bumps that looked like big sores on either side of his neck under his ears. Third, his jaw looked small, recessed and underdeveloped. Fourth, his ears looked a little deformed and misplaced; and fifth, he had another red, sore-like area on the back of his head. All of those things, minus the premature lungs, made the doctors worry that he had some kind of genetic disorder, and that they would be running chromosome tests and others to find out if he had any signs of any kind of syndrome. Poor little guy :-(

About an hour later, after I had had a chance to rest a bit, I was able to go to the NICU to finally see my baby. He was hooked up to several tubes and he was struggling to breathe. He looked so tiny and helpless, and there was nothing I could do to help him...I couldn't even hold him. That was when I kind of lost it. I just couldn't stop crying, and I hated that we were having to go through all of this. I was supposed to be holding my baby and feeding him and comforting him, but instead he was having to lay in a big room surrounded by nurses (awesome nurses, but still..) and annoying machines. But, that's our reality right now, and we're just going to have to push through it and know that it will all be worth it when we finally get to take him home healthy!

Today may have been the hardest and most miserable day of my life so far, but it was also the best. I have a beautiful, sweet little boy and already can't imagine life without him. I'm so thankful that he's as healthy as he is, and I'm so grateful to have such an amazing husband who is already such an awesome daddy. Happy birthday, Ashton!