Mooooooo

I am a cow. A milking cow. Every 3 hours (except at night - I skip one session at night), I hook my breasts up to a pump that takes the milk out of my breasts for 10-15 minutes and puts it in little 2 oz bottles that are provided by the hospital (thankfully; otherwise that would get expensive!). It's a bit tedious pumping 7 times a day, but I can watch tv or go online at the same time, so it's not too bad. Of course I'd rather be actually breastfeeding, which should start happening in the next couple of weeks. I get on average 100-120 CC's (2 oz = 120cc) at every session. When Sophie was eating before the surgery, she would get 55 cc's at a feeding (every 3 hours). You can do the math - I have a lot of extra milk saved up. At one point the hospital told Keith I had a week's worth of feeds saved up. A week ago they told me to stop bringing what I pumped at home into the hospital. So I am freezing it at home. As I write this I am helping to make room in our freezer by eating ice cream (yes, it's a tough job, but someone has to do it). I'm not sure how we're going to use up all of that milk, but it lasts 6 months in the freezer, and up to a year in a deep freeze. Since her surgery Sophie hasn't been getting any milk, so even more is going into the freezer.

Until today. Sophie's recovery is going well, so they gave her 5 cc's of milk this afternoon. She seemed to tolerate it just fine, so they will continue to up her feedings, slowly. She was much more alert today than yesterday, and continues to get various tubes taken out of her. They let me try holding her today, but she was too uncomfortable, so she went back in her bed.

Before I went to the hospital today, Owen and I went to the new aquarium in Tempe (he has this week off from daycare). Owen wasn't as excited as I was expecting, but I think that was because it was a bit overwhelming for him. It wasn't busy, but they have loud music in the background (that was annoying to me), and it really is a different experience for a toddler, especially a shy one like Owen. His favorite part was the sharks, which there were a lot of.

Tomorrow Owen and I will be going to Sedona with my parents. It will be nice to get away for a bit, if even for just 24 hours. Although I will miss Sophie, of course.

But maybe we'll see some cows along the way and I can say hi. Mooooo.

From Europe September 2006

Poop!

The nurses at the NICU sometimes joke about how much of their day and conversations revolve around poop. It really is an important measurement of a baby's progress - it's color, consistency, volume, & frequency can tell you a lot. Unfortunately I wasn't there for it, but I bet there was lots of hullabaloo today - Sophie pooped twice. This is a really good sign, and wasn't really expected yet. It shows that her digestive system is starting to work again. It was still pale (which is a symptom of biliary atresia because of the lack of bile), but they wouldn't expect it to be much different at this point.

Sophie is also progressing in other areas as well. The doctors took her off the ventilator (which breathed for her), and she is now receiving oxygen through a cannula (the two prongs that go in the nostrils). They were able to wean her to a lower dose of pain medicine, which means she is a little more alert. She will probably start getting food on Wednesday. (She is now receiving liquid nutrition through an IV.) I can't hold her yet, so I stroke her head a little, and put my finger in my hand, which she grabs. I've started reading "Sophie's World" to her in case she can hear me. We started this tradition with Owen - Keith read "A Prayer for Owen Meany" to him after he was born.

I didn't get to spend that much time with her today because our family trip to IKEA took longer than I expected - including travel time the trip took 4 hours! That did include lunch at the IKEA restaurant (the Swedish meatballs are really good!). Owen had a ball, especially in the beds and kid's sections, but was overtired by the time we got home.

I think Owen is starting to catch on about having a sister. The teachers at school said that Owen spent most of the day Friday with a baby doll he called Sophie. One of the nurses at the hospital gave Owen a little stuffed dog, and said it was from Sophie, which he got a big kick out of ( he ran around saying "Sophie gave me a doggy!!"). She also gave Sophie a little stuffed horse (a really sweet gesture), which Sophie was grabbing today.

So overall Sophie is doing really well with her recovery, and we are in good spirits. Keith, Nana and Owen all have this week off from work/school, so we will likely spend some good quality family time together. Tonight we were taking a family "nap" (laying on the floor) together. I started getting emotional thinking about when Sophie comes home and our family will finally be whole - that still seems so far away, but with the liver surgery behind us, it is a big step closer to reality.

A weekend of rest for Sophie

Today Sophie had her liver surgery. They did the cholangiogram, which confirmed the diagnosis of biliary atresia, so then they did the Kasai procedure to fix it. Sophie left her room in the NICU to go to the OR a little after 10am. A little after noon we were told they were starting the Kasai procedure. The six of us (both sets of grandparents were there) took a welcome break from the hospital and went to Applebees across the street for lunch, knowing we wouldn't hear anything more for at least two hours. Sophie finally came back to her room about 4pm.

The doctor explained that the blockage seemed to be between the gall bladder and the intestine, which was good news (meaning the liver itself and the main ducts that come out of the liver are more likely to drain properly when attached directly to the intestine, which is what the Kasai procedure does). He said they could see bile draining from the main ducts, which is encouraging. It'll be a couple of weeks before we get preliminary news if the procedure worked, and months before we get a better idea of how successful it was, but everyone's spirits were much higher after the surgery than before. It's always good to see the surgeon smiling after surgery.

It was interesting being in the room as the nurses were getting Sophie settled back into the NICU. There are multiple tubes going in and out Sophie for various reasons (catheters, IVs, breathing tube, etc.). It took several nurses to keep track (and "chart") what medicines she got and which tube to put it in. She didn't get any blood during the surgery, but they were going to give her some afterward to give her more strength. They were still working on everything when we left the hospital at 6pm.

To us Sophie looked really good after surgery. She was puffy and a bit pale, which actually made her look more like a normal baby (she was dark and a bit skinny when she was born). They said she will probably come out of her trance sometime this weekend, at which time they would try to take out the breathing tube. Based on how she reacted to the morphine they gave her yesterday (to attempt to put in an IV, which was unsuccessful; Sophie has very small veins), she will be resting in a drug induced state for a while (they had to warm her and give her oxygen yesterday because she was so relaxed from the morphine). She won't get food (but will get nutrients through her IV) for a few days until her digestive system "wakes up" and starts working again. I was surprised at how big her scar is (9 cm), but the doctor's assured us once again that babies heal better than adults do.

I was definitely upset this morning when it was time for her to go to the OR, but having supportive family around was very helpful. I am also extremely happy with the care that Sophie, and us, as parents, are getting from Scottsdale Shea. The nurses, doctors, various therapists, lactation consultants, social workers, etc. have all been wonderful. I believe God brought us there for a reason. It was hard to leave her tonight, but it is good for us to get away from the hospital (I spent last night at the hospital in a nesting room). And I know she's in good hands.

Here are some pictures from yesterday and today:

From LGA Arrives!

We brought Owen to the hospital the day before the surgery because we realized we didn't have any pictures of him and Sophie together. We didn't pick her up because she was so out of it from the morphine.

From LGA Arrives!

The morning of the surgery. She did pretty good for not being able to eat after 4am.

From LGA Arrives!

Sophie relaxing after the surgery. You can see how big her scar is.

Surgery #1

Sophie has her first (and biggest) surgery tomorrow (Friday, Aug 20th) at 10am. They will be doing a cholangiogram to confirm whether she has biliary atresia (bile ducts that are no longer working or "blocked"). If it is confirmed, (and that is what the doctor is expecting), they will then do the Kasai procedure.

Talking to the doctor on Tuesday about the procedure was a reality check for me. He didn't really tell us anything we hadn't heard or read already, but it finally sunk in. My hopes of getting everything fixed before she came home and then living happily ever after were pretty much smashed. Even if the Kasai works (which happens about 1/3 of the time), we will always have to keep a close eye out for issues and follow up with doctors (which could lead to a relatively "normal" life I suppose). But the doctor said that 1/3 of these surgeries last for a period of time, and then a liver transplant is needed, and another 1/3 of the surgeries don't work at all and a transplant is needed. Those are not the best odds. And that's just the liver issue - there may be other issues/syndromes that pop up as she grows up.

But we can't dwell on the "ifs". We just have to live day to day. I know that God will give us the strength to deal with whatever comes our way. He has already blessed us with so many gifts (wonderful family and friends, Owen, good finances, and each other).

Terrific Twos

This blog has so far been most about Sophie, so this one will be dedicated to Owen. He is being as adorable as ever. Don't get me wrong, he is definitely in the terrible twos (at least for him), but he makes up for his tantrums by saying/doing cute things.

As I believe I've mentioned before, Owen is repeating a lot of what we say. Owen's teachers say the classroom is a bunch of parrots. That brings a lot of laughter from us, as it's humorous how he says some words. We've taught him his full name, which sounds like Owen Benty Apple (his middle name is Bentley). Today, while I was on the phone with a nurse, Owen repeated "displaced anus" (one of Sophie's conditions), which the nurse heard and got a kick out of. That's all I need - Owen going around school saying "Sophie has a displaced anus!".

Owen is, as usual, reading a ton. He loves going to the library or getting new books. He is also getting really good at puzzles - he loves his fish floor puzzle and his block puzzle. He knows all of his letters and is getting better at his numbers - he can now count to 14.

I love to hear him sing. His current favorites are "Twinkle, Twinkle, Little Star" and, of course, "Old McDonald", which is just as often about Cars (the movie), then it is about animals. He can sing most of the ABC song, although he sometimes skips letters.

A friend once told me that it's not worth fighting kids over food. You're not going to be able to force them to eat something. If you keep offering them good foods, they will eventually eat what they need. I've found that is true. We definitely have to say "no" sometimes ("no fishy crackers before dinner"). But if he says no to something, we try to keep things on hand that are relatively healthy that he will often say yes to (bananas, avocado, yogurt, cheese, edamame). It's definitely frustrating at times, but overall I think we're doing pretty good. It helps that Owen doesn't seem to like too many sweets (he has refused ice cream every time it's offered). And he inevitably makes up for the frustration by doing something funny. Tonight at dinner we said something about putting milk in his belly, at which point he proceeded to giggle and point his sippy cup at his belly, which, of course, made us giggle!

One thing that Owen has done recently that at first was amusing, but now worries me a bit, is falling over onto us. The first time he did it the three of us were on the couch, and Owen would stand up, then literally just fall over or jump onto us (usually backwards). It started to worry me when he did it to me on the tile kitchen floor (I caught him and made him stop). Then he did it with Keith on the bed at Nana's house (he was getting pretty energetic with it, so I made him stop). Wow, what trust kids have. I don't think I could do that (you will never catch me bungy jumping)!

It is really cute to talk to Owen on the phone now. Before he used to just listen intently to you on the phone for a minute then put down the phone and go about his business. Now he'll answer you if you ask him a question. Still only one or two word answers, but really cute.

So overall living with a two year old hasn't been too bad (although we'll see what he's like when Sophie comes home!). I think we've dealt with the tantrums ok, mainly by using distraction techniques. Getting ready for school is usually an exercise in distraction: he doesn't like regular clothes (he'd rather wear pajamas), so we have to distract him with something while getting him dressed. Plus he never wants to leave his toys to go to school. Today I was able to get his sandles on and get him outside and into his car seat all with a cup of apple juice (after saying he didn't want to wear shoes and didn't want to go to school). Score 1 for Mommy!!

What's in a name?

Who are you? She had no idea. She was Sophie Amundsen, of course, but who was that? She had not really figured that out--yet. What if she had been given a different name? Anne Knutsen, for instance. Would she then have been someone else? -Sophie's World

Talking about names to one of my friends who just had a baby reminded me that I haven't posted about how we came up with Sophie's name. We really had a hard time with this one. It also took us some time with Owen, but I don't remember it being as hard. We pretty much just had to choose between Owen and Luke (Keith liked Owen, but I had to be convinced). This time we had a list of names, but neither of us really felt any of them were all that good. The main ones on the list were Audrey, Ainsley, Chelsea, Sophie, and Estelle. For a while I was pushing for Ainsley, but Keith thought it was weird to pick a name that was really only known on tv (the blond Republican on The West Wing). I also found I couldn't get over the blondness of the name and couldn't use it for a black-haired baby. If she hadn't been born so close to Chelsea Clinton's wedding we may have ended up using Chelsea, but I was never a huge fan of the name. Keith was fixated on Estelle for a while after she was born (he liked that it was uncommon, but people still recognize it), but we were worried that other people wouldn't like it (the grandma-ness of it; plus for me it didn't pass the yell test). Audrey was a nice name, but didn't have any draw for me. Sophie was too close to Sophia, which is a VERY popular name (which we wanted to avoid). Since none of the names really appealed to us that much, we briefly tried some off-the-wall names like Coral (Keith wouldn't allow us to name our child after the mother in Finding Nemo, even though he came up with it).

In the end we let Owen decide. Before the baby was born we would ask Owen, "Should we name your baby sister (insert name)?" Sophie was the only one he consistently said yes to. On our way to the hospital after my water broke, Owen was still focused on Sophie. That was what eventually convinced me to pick it, and I convinced Keith to go for it. We had originally said we would use Virginia as a middle name (we wanted something that meant something to us, and that was my grandmother's name, plus growing up I vacationed in Virginia to visit my grandparents). We decided to use Estelle since we liked the name but couldn't quite pull the trigger. We figured that if she didn't like Sophie, she could go by Estelle.

For the first couple weeks of Sophie's life, Keith said he didn't like it and even talked about changing it. Luckily he couldn't come up with anything to replace it with, so it's staying. I later had a nurse at the NICU tell me that before we named the baby, she was telling another nurse that she looked like a Sophie (she didn't know it was on the list). She was super excited when she found out we did name her Sophie. And I took that as a sign that we did well.

In case you're wondering, Sophie (or actually, Sophia) means "wise".

In other news, we met with the geneticist, Dr. Aleck, today. We had already heard the results of the chromosomal tests (everything was negative for the tests they did). To me that was good news, and he agreed, but it was interesting to see his take on it. To him her medical issues were a bit of a mystery - since he couldn't find a known "syndrome" that explains her set of issues, he seemed almost disappointed. I asked if it was possible that they were just a coincidence - and didn't have to be explained by a syndrome - but his answer was a bit vague (which I guess in this case reality is vague). He pretty much said it depends if other medical or developmental issues pop up as she gets older. He recommended that we bring her in to see him every 6 months to a year. I'm not sure how to take that. Do we really need to worry about her as she grows up, or is this a case of having too much information, and looking for a solution (or cause) when there isn't a problem? I guess we just need to be aware of how she develops over time, which really isn't that different than any baby.

Owen seems to be developing just fine, although in the "feeding himself" development he's taken a step back. He now requests us to "feed me". Even with his milk bottle sometimes. I chalk it up to him being a two year old, and I am hoping it's just a phase. It's a little weird because just a couple of weeks ago I thought he was moving to the "I want to do everything myself" phase. Ah, life with a two year old. He keeps us on our feet!

And then there were four

It struck me today as I was signing thank you cards that we are now a family of four. How wonderful is that! It still doesn't feel totally complete yet, though, since we're not all together very often. Owen visits Sophie 1 or 2 times a week, so it's usually my "Owen family time" and then "Sophie family time". Sophie doesn't feel completely "ours" yet - that won't happen until she comes home.

Which, unfortunately, will be a while. We were spoiled by Owen being able to come home from the hospital so quickly. Today we had a family meeting with the pediatrician at the hospital. We didn't have any new info, but it was good to get everything explained again to make sure we understood everything. The current plan is to do the anal repositioning surgery not this week, but next week. They would do the cholangiogram (to take a closer look at the liver to see exactly what the issue is) at the same time. If it does turn out to be biliary atresia, they would do the Kasai surgery to fix it about a week later. She would then be in the hospital to recover probably two weeks after that. Which totals up to 4-5 more weeks, getting her close to her due date. She's already been in the hospital for 2.5 weeks. That's almost two months! Which is both long and short at the same time. I'm sure the remaining time will go quickly, but it still sounds weird to say my baby will be in the NICU for two months. But I am reminded daily how lucky we are by Sophie's pod-mate, Gavin, who has been in the NICU since 4-5-10 (born at 27 weeks; he will hopefully beat us home). His other pod-mates are triplets - I definitely don't envy them either!!! :-)

It's a longer commute, but my boss is much, much cuter!!

It's a good thing my boss has a sense of humor. :-) And is understanding and flexible, along with everyone I work with at Freescale. I left them somewhat in a bind, as I wasn't able to train them on everything, and even for what I did train on, it's hard to fully understand right away. I'm surprised I haven't gotten more calls from them, but I know they will get through everything ok. But I'll probably be gone longer than I was for Owen. My paid (at 90%) maternity leave is 6 weeks, and then I can take 12 weeks of unpaid family leave after that. With Owen the 6 weeks took me to his due date; there was no way I was going back to work that soon (I started working part-time from home a few weeks after that). With Sophie, the 6 weeks takes me to 2 weeks BEFORE her due date. She may even still be in the hospital at that time. What sucks is that if Sophie was still in my belly, I would've been able to finish up some training, and then go on short term (paid) disability - right now I would be scrapbooking at home and getting paid for it, then I would still get the 6 weeks paid after she was born. But because she came early (and it's no longer MY medical issues, it's hers), I only get paid the 6 weeks. We have been blessed financially, so this isn't an issue for us, but I can see how much of a financial burden this is on other families.

Sophie is at Scottsdale Shea hospital. That's about a 20 minute drive without traffic, and about 30 minutes with. It's not really that bad a commute (and it's actually very pretty), but at first it was frustrating because we live within walking distance of Banner Desert. But from what I have seen & heard, we are at a great hospital, so I don't mind filling up the gas tank more often. I am very happy with the care that Sophie is getting. We were unhappy when Chandler Regional hospital sent Owen (a 34 weeker) home at 2 days old, and we had to go back into the hospital (this time Banner Desert), the next day. Plus, Shea is closer to both sets of grandparents, which is important for dropping off Owen (that definitely worked out well for the birth). It has been an amazing blessing to have both sets of grandparents here to help out with Owen. I'm not sure what we would do without them.

I generally leave the house shortly after 10am to get here in time for Sophie's 11am feeding. I then stay for the 5pm feeding, which gets me home in time for dinner. She gets fed every 3 hours, at which point I take her temperature and change her diaper. She has started to take part of her feeding from a bottle (usually between 10-20cc), and then the rest through her feeding tube (for a total of 45cc). I have also started trying breast feeding with her, which at this point is just trying to get her acquainted with the breast. All of this takes around an hour, and then at some point I pump so she can have a constant supply of milk. So it's a pretty busy day. On the "off" time I do some reading, blogging, eating, or exercise.

Although I have had some episodes of post-partum depression, I generally feel upbeat when I am at the hospital. The nurses and doctors are very happy and caring, which helps a lot.

Plus, my boss is getting cuter every day. :-)

From LGA Arrives!

Sophie's Birth Story

Before I forget the details, here's the story of how beautiful little Sophie joined this world.

Since Owen was born at 34 weeks, my doctor warned me that he would watch my pregnancy a little closer than normal, especially in the latter stages. Starting at 24 weeks, every 2 weeks I had a Fetal Fibronectin test done. FFN is the "glue" that holds the baby in the womb. In a normal pregnancy, the mother leaks out the fluid near the end of the pregnancy. If you have a negative FFN test, you statistically have less than a 1% chance of going into labor in the next two weeks. With a positive test it's more like 13%. On Friday, May 28th I got a call that I had a positive FFN test. TWO DAYS before I was supposed to leave for a week long vacation in Carlsbad with my family. I was devastated. I was really looking forward to the trip as a last hurrah before the baby came, and I had started to talk it up with Owen so he was excited too. Plus, with the vagueness of the test (13%??), it was hard to stifle the thoughts of just taking the risk and going on the trip anyway. But my doctor sent me to the hospital to make sure I wasn't having contractions, which I wasn't. Both my doctor and everyone at the hospital recommended that I didn't travel, so I didn't.

My next FFN test was negative, so I had thoughts again of travelling. My parents were going to San Diego for the 4th of July, so I was hoping everything would be negative until then so I could also go. Fortunately I was able to go, and I thoroughly enjoyed seeing my brother's family and enjoying the cool weather. A couple of days after we returned home, however, I woke up with a lower backache that would not allow me to sleep. I knew that was a sign of pre-term labor, so I called the after hours # for my doctor, and they said I should go to the hospital, so that's what I did (at something like 4am). I was having contractions, although at the time I couldn't recognize them as such. Over the course of the weekend they tried a few medications to stop the contractions, and on Monday sent me home with Terbutaline in pill form. They also gave me steroid shots that would help the baby's lungs in case she was born soon. My doctor said he wasn't putting me on strict bed rest (he said bed rest doesn't really prevent pre-term labor), but that I should pretend I have the flu - take it easy, no house work, but if I needed to make a quick run to the store, that was ok. So I did take it easy, but was still able to do some more training for work (part time from home), and enjoyed time with Owen, especially in the pool.

I was now able to recognize when I was having a contraction, so when I noticed a few in a row, I was supposed to lay down and monitor them. That's exactly what I was doing a week and a half later at around 6:45pm when I felt a pop like a cork and several gushes of water. I exclaimed, "Oh, shoot!! My water just broke!". Owen got a big kick out of that and like a true two year old started running around laughing saying "Oh shoot! Oh shoot!". It's a good thing a slightly different version didn't come out of my mouth! :-)

We then knew we had to get to the hospital, and that I wouldn't be coming home with a baby still in my belly. We didn't know if they would try and stop me from going into labor or not. I was at 32 weeks; with Owen, my water broke at 34 and they induced me because I wasn't having contractions. We drove to the hospital and Nana met us there to pick up Owen. At the hospital they gave me a larger dose of Terbutaline, but said that if that doesn't do the trick they wouldn't stop me from having the baby. They measured my cervix and said I was only dilated about 1 cm. The contractions continued, but were not painful, so at about 10pm I sent Keith home to get some rest and to get the camera (yep, the 2nd big event of our lives and we forgot the camera!). We really didn't think the birth would happen that night. But as I lay in a triage room mostly by myself (the nurses came by occasionally) the contractions got stronger and stronger. I was half a sleep when there were no contractions, so I really didn't have any sense of time or how many contractions I was having. I knew they were getting stronger, but I was able to lessen the pain with visualisation and controlled breathing. As long as I was on the beach watching the waves, I could handle the pain. It was actually quite interesting how well that worked. I think even the nurse didn't believe the monitors (or me when I said the pain was at an 8) because I probably just looked sleepy and not in pain. So it was a surprise to all of us when she checked my cervix at ~3:30am and I was 6cm dilated. I called Keith to get back to the hospital quickly, and they moved me to a birthing room.

They asked if I wanted an epidural and I said yes. I was tempted to say no and try more of the visualization, but I knew it would be a lot harder with all of the lights on and people around. I'm glad I went ahead with the epidural, as I was able to relax and actually enjoy the experience. Plus I was able to listen to the NICU nurse practitioner who came in to tell us what to expect having a baby at 32 weeks. Keith arrived shortly after I got the epidural, at around 4am.

Shortly after the NP left, I vomited (which is what I did with Owen). The nurse took this as a cue to check my cervix again, and not surprisingly, I was fully dilated and she could feel the head already. They quickly got the doctor on call in and all of the nurses in to take care of the baby. Even though he wasn't my OB, I had already met and really liked the doctor on call, Dr. Yosavich (sp?).

Once everyone was ready they told me to go ahead and push. Keith made some kind of comment about not messing up on the timing this time, alluding to Owen, where I pushed for 45 minutes, and he kept telling me, "You're almost there!" the ENTIRE time. This birth was a bit different, to put it lightly. I pushed once and the doctor told me to stop so he could do an episiotomy. I pushed two more times and out she slipped!! Total time from first push to birth: 1 minute! Time of birth: 5:15am.

The nurses cleaned her up and checked her out while the doctor stitched me up. They said she looked great. Dr. Y had earlier explained that he'd be happy if she was 4 lbs at this age - she weighed in at 5 lbs 1 oz!! They let me hold her for a couple of minutes, and then they took her over to the NICU.

From LGA Arrives!

In Owen news, tonight before bed, Owen and Daddy spent several minutes making fake toots at one another. Owen would lift his leg and try and make a sound through his lips (copying Daddy). He thought it was histerical, which, of course, it was. Can't wait until Sophie gets home so I'm not outnumbered by guys. :-)

O, So Much Love

Welcome to my new blog, O, So Much Love (get it?? That's about as creative as I get!). Back when Owen was born, Keith and I occasionally blogged about having a new baby, but at some point the blogging went by the wayside. Then came Facebook, and with his own account Owen kept his friends and family informed of his doings himself. But then the FB nazis took away his account! I've been enjoying some of my friend's blogs on their kids, so I've been meaning to start back up again. With the arrival of #2, it's about time. Hopefully this one will last longer than my photo blog. :-) This blog will be about what Owen is doing, how Sophie is coping with life outside of the womb, and how Keith and I are surviving with two kids. Sophie is having a lot of medical issues, so I will try to be as accurate as possible, but a warning to any doctors or nurses out there, I'm probably going to mess up the medical terminology.


You may be wondering: Sophie and medical issues? Don't worry, she's doing really well right now, but there are some issues to be taken care of and some potential issues that are being tested.


1. First, a TMI warning: we call this one the Rear Plumbing Problem. To put it bluntly, Sophie's anus is in the wrong spot. It is closer to the vagina than it's supposed to be. The issue is that it may not be going through her sphincter muscle, which would cause issues down the road. To know the full extent of the problem they would have to put her under anesthesia. While she's under, if they can they would fix it. Since she's stooling fine for now, they are going to wait a couple of weeks (see #2 below). Here is more info on this condition if you're interested.


Because they found this birth defect, they have done more testing. The idea is that if there was one problem during fetal development, there could have been others at the same time. This is what else they have found so far (I won't go into the things they found which are "findings" but aren't problems at this point like an extra piece on her kidney and a bicuspid aorta valve):



2. Problems with her liver. Sophie potentially (most likely) has an issue called Biliary Atresia. Her liver appears to have a blockage such that it cannot secrete the bile correctly. They will need to do a surgery to first determine the extent of the problem, and then if possible, fix it by by-passing the blockage. This is definitely a bigger surgery than #1, but the doctor's assure us that babies handle surgeries a lot better than adults do. They may even be able to combine this surgery with #1. The current thought is to do the surgery in a couple of weeks.



3. They found some extra fluid in her abdomen, a condition called Hydrops (she also had extra fluid in her skin at birth). This can be caused by infectious diseases, cardiac issues, or chromosomal issues. They have ruled out any infections and cardiac issues, so they are doing a full chromosomal test (this is where the "syndromes" are found). This is very frustrating, because it takes at least a couple of weeks to get the full results back. We did, however, receive some really good news today: she is negative for Turner syndrome and Alajear syndrome (I have no idea how to spell that last one).



So Sophie will be in the NICU for probably at least 3 more weeks. I'll write more later on how we're handling that. As far as being a premie, Sophie is doing great. She never had to be on oxygen, and is now off her warmer. She has a feeding tube, but is starting to take some of her feeds from the bottle. The main cue that she is ready to go home (other than recovering from surgery) will be when she takes all of her feeds from a bottle or the breast.



Today is Sophie's two week birthday. I was hoping to get some pictures today, but I am sick, so I couldn't go see her. :-( It was scary coming home last night with a 103F temp, considering I had just spent the day with Sophie. Hopefully she doesn't catch anything.



As for Owen, he doesn't quite fully understand everything that's happening. He likes talking about Sophie, and visiting Sophie, but that's probably because they have Lincoln Logs at the NICU for him to play with. :-) He told his teachers at day care that Sophie was going to go home with Grandma and Grandpa, so I think he's in for a big shock when she does come home. So are Keith and I! :-)



That's enough for today. I hope to write up Sophie's birth story soon.