Tuesday, October 28, 2014

Answers To Questions about Kieran's Asymmetry

There were a few questions on my last post about Kieran's MRA results, and instead of answering them individually, I thought I'd answer them in a quick post. 

The most common question/comment was that all faces have asymmetry. This is totally true. No face is perfectly symmetrical, and most of the time, you can hardly notice the differences. Kieran's face, however, is pretty noticeable. I don't like to post pictures of him on such an open blog, but I've included one below so that you can see the difference. 

The right side of his face is a lot larger than his left, especially in the cheek area. His eye socket is larger, and at certain times, the right side of his mouth droops lower than the left. After his doctor noticed the differences, we remembered that in the hospital after birth, Kieran had difficulty opening his left eye for about a week. I thought it was due to him being stuck in the birth canal for so long (and it might be!) but it's something I want to bring up to his doctor when we speak to him. We've also noticed that Kieran moves his right arm much more than his left. Of course babies don't have hand dominance yet, but again, it's something I'm going to mention. 

Another comment was from a reader whose daughter was born with a flat spot on her head and had a bad case of torticollis (a twist and weakness in one side of the neck.) I did ask Kieran's doctor if he had a flat spot in his head that could be causing the asymmetry, and while he does have a small one, it's not large enough to cause any changes to his face. 

The good news is that the scariest option has been ruled out. The blood flow in his brain is good on both sides and there are no masses. I haven't done any research because I don't want to know all of the worst case scenarios out there, so we're going to wait and see what our doctor suggests next. 

Thank you all for your prayers, thoughts and kind words! <3

Monday, October 27, 2014

MRA Results

Keegan talked to our doctor's nurse today and finally got the official results from Kieran's MRA (for some reason it took over a week for the hospital to fax them over to our pediatrician.)

The results are good. Everything in his brain looks perfect; good blood flow, his brain is developing as it should, no masses.

As happy as we are to receive good news, it doesn't explain the asymmetry. We're not sure what our next steps are because our pediatrician clinic is a father/son team, and we've been seeing the son primarily, but the father was the one who reviewed the results today and told us the news. It'll be the son who decides what our next steps are and he's out of town right now.

So now we wait again. I will update when we have more news!

Tuesday, October 21, 2014

Our MRA Experience

The day started at 4:30 am when I got up to feed Kieran. I was told it was ok for him to eat up to an hour before we got to the hospital and I wanted to fill up his belly as much as possible so that he wouldn't be too hungry while we were waiting for the MRA.

We arrived at the outpatient surgery wing of the hospital just after 5:30 (was told to be there between 5:30 and 6,) and the intake nurse was surprised to see us. She said that most of the radiology staff wouldn't be there until 6:30 and they had Kieran scheduled at 7. We considered packing up and grabbing some breakfast, but the only place that was open was McDonlads and neither of us felt like loading up on grease, so we sat and waited. We were called back by a radiology nurse at 6:30 so that we could sign the paperwork and be ready for them to take Kiearn at 7.

While we were filling out the paperwork, the nurse asked when was the last time he ate. I told her it was around 4:30 and she paused and let us know that he shouldn't have eaten after midnight. I let her know that when the hospital called to confirm his name and insurance information, I specifically asked when was the last time he should eat and was told up to an hour before. The nurse said that she would check with the anesthesiologist to see what their recommendation would be, that there was a chance we'd have to cancel, but we'd go ahead and fill out all the forms anyways.

Around 7, we were moved back to a room in the MRI department. It was pretty sparse, just a bed, two chairs, a TV and equipment needed for monitoring vitals. Keegan and I sat down in the chairs and waited until someone told us what was going to happen. Eventually a nurse came and said that the anesthesiologist wanted to wait long enough for the food to make its way through his system which meant our 7 am appointment would have to be moved back to their next available which was at 9:30. It was inconvenient, but I'm happy they got us in at all!

The next few hours were spent trying to console a baby who was hungry, tired and cranky. Unfortunately I forgot his pacifier at home, but I thankfully brought a bottle of pumped milk for after the procedure (thinking he was going to be too groggy to nurse,) so I stuck my finger in the bottle nipple to prevent him from sucking in air, and let him suck on it. Keegan and I both walked many laps around that tiny room trying to bounce and rock him to sleep.

At 9:30, a nurse came in to get Kieran. She had us change him from his snap up PJs, to a onesie that snapped at the crotch and pants. I'm really glad I brought them because otherwise he would have had to be wrapped up in an adult hospital gown! This was the hardest part for me. We weren't allowed to go to the procedure with him, and I was afraid that he would freak out being surrounded by people he didn't know doing things to him that were scary and he couldn't understand. We kissed him goodbye and the nurse took him away. I had a mini breakdown and cried in Keegan's arms for about 30 seconds, and then we sat down to wait.

We were told the procedure would take about 20 minutes and then he would have to spend some time in the surgery recovery room to make sure he was coming out of the sleeping medications ok. 20 minutes passed. Then 40. Then an hour. We started getting worried and wondered what was going on. After an hour and a half, a nurse came in to tell us that he had just gotten out of the MRA and that he was in the recovery room doing well. They had to wait until he was awake enough to cry for a while and then they would bring him down to us.

Another half hour passed and we finally heard the wheels of his bed rolling down the hall. The nurses had "swaddled" him up in a huge heated blanket and his little head was poking out the top. I wish I had gotten a picture, he looked so tiny! He was making these little whimpering noises, ones that resembled the noises a young puppy makes. His eyes were shifting everywhere, kind of like he couldn't focus on anything. We knelt down to his level, spoke softly, and gave him lots of kisses. He was still hooked up to an IV and what I think was a pulse ox machine, so the nurses had to unhook him before we could pick him up. The only time I really heard him cry was when the nurse had to take the tape off his hand that held the IV.

We were told that we had to stick around until he could prove that he could swallow. We took out a bottle of pumped milk and tried to get him to eat. He had a poor latch because he was falling in and out of sleep, and he kept trying to breathe while he ate which caused him to choke and sputter. We did a lot of burping because he was full of gas and after a while, he eventually ate an ounce out of the bottle. I also let him breastfeed for a few minutes because I was horribly engorged after not feeding for almost 9 hours.

After we were discharged, we packed everything up and left around 12:45. We stopped for lunch because Keegan and I hadn't eaten yet, then headed home. Kieran slept during lunch and the entire ride home, but then woke up once we were home to eat. He eventually became more alert and gave us some smiles, but he was pretty quiet all day. He went to bed early around 8 and passed out immediately.

Thankfully the preliminary results show nothing is wrong in his brain. We haven't spoken to his doctor yet, so we're not sure what the next step will be. Overall, the entire experience wasn't as bad as I expected, but it's not something I want to have to go through again. Thank you all for your thoughts and well wishes!

Friday, October 17, 2014

It Could Be Nothing...

...or it could be something.

That's the limbo we're currently living in.

On Wednesday, at Kieran's 2 month doctor's appointment, Dr. S noticed that his face is asymmetrical. His left eye socket and cheek are noticeably smaller than his right. When he mentioned it, I didn't think it was that big of a deal. Babies are constantly growing, so I figured it was just a growing pain of sorts, and would even out eventually.

My care free attitude changed when Dr. S had another doctor come in to make sure he wasn't "seeing things." She agreed that she could see the difference and they started throwing around terminology that I didn't understand and can't remember.

Dr. S said that the difference could be caused by any number of things, but the most common is a blood restriction to one side of his body. He threw around a bunch of other ideas, including something about the "strawberry" birthmarks Kieran has on his face and how they can occur inside the body as well (as opposed to just on the skin.) Unfortunately I didn't process much of what he was saying and came out of the appointment very confused and worried. Dr. S said that an MRA (similar to an MRI, but provides images of blood flow in the body,) is the best way to check things out, but that would mean Kieran would have to be sedated and it would cost over $1,500, so it would be a last resort.

This morning, I got a call from Dr. S's nurse who said an MRA is scheduled for Monday at 5:30 am. I want to think that Dr. S ordered it just so we can get the best idea of what's going on, but a tiny bit of me wonders if he thinks things are worse than he's letting on.

I've stopped myself from Googling anything because as we all know, Dr. Google will say that you have cancer no matter what the symptoms are. Thankfully my dad is much better at wading through the worse case scenarios and gave me some information about what might be going on.

The most common thing that causes blood restriction is blood vessels being too small, but it can also have to do with his heart or something in his brain. Of course there could be cancer or a mass, but that's a worst case scenario and I'm not letting myself go there.

We have to see what the MRA says before we can make a plan of action. If it is a worst case scenario, we're only 3 hours from St. Judes in Memphis as well as 3 hours from a wonderful hospital in Birmingham, so I'm not worried about being able to find good care.

So basically, we don't know a whole lot right now, but are hoping to figure things out on Monday. Dr. S said that the treatment of restricted blood flow is normally surgery, so I'm hoping that it won't have to be on his heart or in his head.

On Monday, if you could send us some good thoughts, prayers or juju, it would be very much appreciated.

Thursday, October 16, 2014

Kieran Two Months

Height: 23 inches
Weight: 10 pounds, 8 ounces. (I'm pretty proud to say that he's gained a pound and an ounce in 1 month! I was getting worried about his slow weight gain, but he's chunked up again.) 
Head circumference: 16 inches
Clothing: He's exclusively in 0-3 and 3 months clothing now. I think the newborn clothing would still fit him around his waist, but he's long, plus the added bulk of cloth diapers, so we've had to move up to the 3 month clothing for the length.
We've also exclusively cloth diapered since he was about 2 weeks old. While it is more laundry, we absolutely love it, especially since we're not running to the store to buy diapers every week!
Nicknames: Fussy Pants, Chunker, Chunk-a-monk, Chubby Cheeks, Chubby Cheekers, Little Love, Baby Boy, Bubba, Bubsy...I don't think he will know his actual name with the number of nicknames he has.
Food: Exclusively breastfed. I'm still pumping to try and build a frozen stash, but it's not going too well. We only freeze if I get 4+ ounces in a day, but that doesn't happen often, so we feed him the random 1 or 2 ounces in a bottle. He's had no nipple confusion or preference, and he'll take the milk cold from the fridge. 
Sleep: It seems like he's regressed back to a newborn sleeping pattern the last half of this month. He was sleeping from around 10 pm to 4 or 5 am, eating, then getting up around 7 for the day. Now, he's getting up multiple times a night (sometimes as many as 5!) and it's wearing me out. We've started putting him to bed between 8 and 9 because we noticed he was getting really fussy if we kept him up until we went to bed around 10 or 11.
Naps: Naps are hit or miss. I've started to notice a pattern where he'll nap about 2 hours after waking up, around 1 or 2, and then again between 4 and 6. Nap length varies widely (anywhere from 20 minutes to 3 hours,) and he naps better when we're at home. When he comes to work with me, napping is a fight, and I think that's because there are so many distractions that he doesn't want to miss out on. No matter where we are, he always sleeps better on me, whether that be on my chest while we lay on the couch, or in our Ergo carrier at work.
- We're getting smiles! We're getting both recognition smiles (like when Keegan walks in from work,) and smiles when we "boop" his nose or tickle his chin.
- He's also drooling like none other. He's constantly chewing on his hand or arm, and has once sucked on my wrist while I was holding him.
- He's also been sticking his tongue out, and will mimic when we stick out ours. Keegan will sit Kieran on his chest and play a sticking tongue out game. 
- He's able to see farther now, and he absolutely loves our ceiling fan and lights. We'll be sitting on the couch having a "conversation" and all of a sudden he'll lean his head back, his mouth will form into a big "O," and he'll stare at the fan for minutes at a time.
- He's cooing up a storm. When he's in a particularly talkative mood, we'll talk back to him and have conversations.   
- He's started batting at the toys that hang down on his playmat. He's not consciously reaching for objects yet, but his flailing arms seem to have more direction.
- I went back to work at the beginning of October on a Monday/Wednesday/Friday schedule and he's coming with me, for now. Working with a baby has been a big adjustment and I don't get as much done during the day as I used to, but I'm so thankful that he's able to come with me.
- We're pretty sure he has Grandpa eyes! Keegan's grandfather's eyes change color from blue to green to gray. Keegan's eyes do the same as do a few of his cousin's. We were really hoping that Kieran would get them as well and it looks like he might have. We see gray and blue pretty consistently, and have just recently started seeing green. We know that his eyes won't be his permanent color until he's around 6 months, but we hope that he keeps his Grandpa eyes. 
- We "decorated" for Halloween / fall with this cute craft:
Likes: Snuggles, eating, sleeping, bath time, tummy time, his Kick and Play Piano playmat.
Dislikes: Getting his clothes changed (he doesn't like things going over his head,) getting his diaper changed, being cold, being left alone while I try to get something done.
I absolutely love this age. Sure, I loved the newborn sleepy cuddles, but having Kieran react to the noises and movements I make is awesome. His smile is the best thing I've ever seen and it makes my heart so happy to see it. I can only imagine how much fun he's going to be when he starts laughing.
Mama Update:
This month was pretty rough for me health wise. I had mastitis and 1.5 UTIs (one full blown one and one I caught early enough that it wasn't too big of a deal.) My incision still isn't healed and I just found out that I have a cavity I'm going to have to get filled at the end of the month. Besides all of that, things are going well. I feel like we're getting in a good rhythm with things and we're lucky that he's such an easy baby. Sure, he cries, but 99% of the time I can calm him down with a boob or cuddles. We've started putting him to bed earlier which has allowed Keegan and I have to have at least an hour of time together. Most of the time it's spent watching TV in bed, but it allows us to catch up and cuddle. I'm constantly amazed that this little boy is ours and I'm head over heals in love. 

Thursday, October 2, 2014

7 Weeks Postpartum

I still can't believe that I've been doing this parenting gig for 7 weeks now.

I had my 6 week postpartum appointment last Friday and overall, things checked out well. I'm back down to my pre-pregnancy weight (I actually was at my 2 week appointment,) and my uterus has shrunk back to size. 

The only worrying things were that my incision has not completely healed, and I had a bad case of mastitis in my left breast. Dr. L said that my incision not healing could be caused by my gestational diabetes, and that all we can do is keep it clean and dry, and wait. I'm still having discharge and blood periodically, so I'm ready for it to heal. Dr. L sent me to do a repeat glucose test on Monday to make sure my levels have gone back down, so we're waiting to see the results from that. 

As for the mastitis, I'm on a round of breastfeeding-safe antibiotics. I started feeling pain in my left breast last Thursday, which I thought was due to engorgement because Kieran had slept through the night (he normally wakes up at least once.) He was still sleeping, so I pumped to try and relieve the pain, but it didn't help. The pain increased throughout the day, and by that evening, my entire body was aching, my breast was swollen and hot, and I had red streaking on my skin. Thankfully it happened the day before my appointment, and the symptoms have subsided with the antibiotics. We had a few rough days of nursing because my breast was so swollen that Kieran couldn't latch on. It's also affected my already fluctuating supply, so I'm increasing my doses of fenugreek. If anyone has any other ideas for increasing supply, I'd love to hear them! 

Mentally and emotionally, I'm doing pretty well. I was braced to experience the baby blues and had Keegan on watch for anything extreme, but my emotions have been a lot more level than I expected. I think that it's partially due to the fact that I still haven't fully allowed myself to process the birth and our time in the hospital, but I'm afraid to let myself think about it too much because I know I did everything I could, and I don't want to shine a negative light on it. 

I have had a few teary moments when Kieran is crying and I can't figure out what's wrong, and breastfeeding continues to be harder than I expected. I also get emotional when I think about how much I love this little being, and how damn lucky we are to have him. I can't help but think about if we're going to try for a second, and my heart hurts when I think about having to do treatments again. We've discussed adoption, but I don't think we'll make any firm decisions until Kieran is a year old. Dr. L doesn't feel comfortable with me getting pregnant before a year because my uterus won't fully be healed until then. 

I started back to work Tuesday/Thursday this week, and then M/W/F beginning next week. My boss is letting me bring Kieran to work for a year, or until he's too much of a hassle for me to get any work done. Bringing a baby to work has been difficult as I explained in my last post, but I think we're slowly getting into a routine. I just need to keep telling myself that he's only little once, and I'm extremely lucky to have such an amazing opportunity.

I thought my period had started on Monday, but it turned out to only be two days of extremely light bleeding, not enough to full call a period. I decided against any type of birth control because I want to see what my body will do on its own. That may change down the road, but it work for us for now.

Overall, these last 7 weeks have been the craziest, most stressful, wonderful, amazing weeks of my life. I still can't believe that I have a son who I get the honor to watch grow up.