Monday, September 27, 2010

The Light at the End of the Tunnel

Sorry for taking so long to write another post. Sophie is recuperating pretty well from her surgery on Wednesday. She started eating on Saturday with a small amount of milk (10CCs), which they are increasing every 6 hours. She should be up to her full feeds (~75CCs) by Wednesday night. She's been pooping a little, which bothers her, but her surgical scars are healing nicely. The G-tube is in, and we use it for her medicine and whatever portion of her feeds that she doesn't take from the bottle. Since the surgery she has had periods where she gets really upset and shrieks her loud cry. (They even had to move her out of one pod because another baby in the pod needed quiet!) Normally she quiets down as soon as you pick her up, but not so during the last few days. But it has been less than a week since surgery, so I suppose she is allowed to complain. :-)

I have thought several times how she now looks like a "normal" baby; she's 8 lbs, can open her eyes wide, and now has nothing on her face, really for the first time since her birth:
From LGA Arrives!


The current plan is for her to go home on Friday. Yay!!!!!! That is very exciting, and at the same time, scary. No more monitors to tell me she's fine (which I'm not really worried about, but you do get used to them), and no more nurses to help (although we will have some nurses come to the house). One big convenience of having Sophie at the hospital was that everything came to her - all the doctors, all the tests, and all the medicines came to her bedside (or maybe downstairs). We will now need to keep track of her medicines/vitamins (I can think of 4 off the top of my head) and doctor's appointments (surgeon, gastroenterology, speech therapy, developmental specialists, etc. plus the normal pediatrician appointments). But at least now we can walk around with her, take her outside, and go places. Although I'm not sure how much we should be taking her out in public to keep her from getting sick. I am a little worried how she is going to fare going from the sterile hospital to our anything-but-sterile house. But at least I can keep her on clean blankets.

We have been trying to warn Owen of the change by telling him that Sophie will be coming home soon. I'm not sure how much he understands that. I'm sure he will adjust pretty well, although I'm sure there will be some jealousy. Owen started sleeping in his big boy bed (out of the crib) this past weekend. So far Owen has done really well in his new bed, but I'm scared for the time when he actually realizes that he can get out of it by himself in the middle of the night. Odds are very big that he will be jealous of where Sophie will be sleeping (our room).

Owen is continuing to delight us. I love hearing him sing (Itsy Bitsy Spider and Twinkle, Twinkle Little Star), and he constantly amazes me with his memory. We have a Winnie the Pooh book that he recites whole sentences to us as we are reading. I tried playing Go Fish with him last weekend. Even though I had to pretty much walk him through the whole thing, it's exciting to know that we can now introduce more games to him. Let me know if any of you parents have recommendations on board games for this age, as I'm starting to think about Christmas presents.

This past weekend we were at a baby shower for a friend where the guests were asked to write down words of advice for the new parents. My advice was to remember that all phases will come to an end. So hang on through the bad times and cherish the good ones. I am happy to report that our "NICU phase" (which hasn't been all bad) is soon coming to an end.

I can see the light!!

Tuesday, September 21, 2010

Decisions, Decisions

First off, happy 2 month birthday Sophie!!

Boy, what a crazy day! It started with a call from Dr. A (one of the neonatal pediatricians at the NICU) that said he had talked to the surgeon, Dr. Egan, about Sophie's surgery. Apparently Dr. Egan had thought that he and I agreed to not do the G tube (a feeding tube that is surgically inserted into the belly) and would instead only do the NG (the feeding tube that she has now that goes down her nasal passage and into the stomach). So he scheduled the analplasty (the surgery to correct her anal opening) for tomorrow at 7am. But Dr. A told Dr. Egan that it was his understanding (and recommendation) that she get the G tube. So they needed us to clarify our decision. Today. Because if we did do the G tube, the surgery couldn't be done tomorrow. So I told them I was leaning towards the G tube, so let's delay the surgery. I figured that would also give me more time to make the decision. But then at 3:30pm they told me they could do both surgeries tomorrow, so I needed to make a decision tonight.

I vaguely remember my discussion with Dr. Egan, but it was a couple of weeks ago, back when I had hope that Sophie could come home without any tube. Unfortunately that is not the case now. She will hit the "deadline" of 41 weeks tomorrow and has not shown a ton of improvement in her volume of nippling (although her technique does seem to be better). Until today I didn't realize that she could go home at this point with just the NG tube, and not a G tube.

There are pros and cons for each, and I had (and am still having) a hard time making the decision. [Let me clarify that I discussed this with Keith, but ultimately it would be my decision since I will be the one taking care of her the most.] My first reaction was to say if we could avoid a surgical procedure, let's do the NG. But the pediatricians recommended the G tube, mainly because they believe it could be a long time before she nipples her whole feeds (months). The NG can be a hassle because the tube can come out, and the baby does not like it when it is reinserted. The G tube could always be inserted in a few weeks, but that would involve another surgery, so it's best to take care of it now that she's already going under anesthesia.

I made an appt to talk to the surgeon tonight, and before that I talked to our friend Harry who is a pediatrician (who was very helpful). I decided to go ahead with the G tube because it seemed like it would be easier for us, and probably more comfortable for Sophie (barring any infection and after the initial effects of surgery). I really hope that she proves the pediatricians wrong and starts nippling her full feeds soon and the G tube is deemed unnecessary, but I have prepared myself for the possibility that it could be quite a while before she does that.

The good news is that this means Sophie will be coming home soon. They figure she should be ready about a week after surgery. We're mostly ready, but have a lot of last minute things to do (cleaning, buying nipples, etc.).

If you had told me two months ago that Sophie would still be in the hospital at this point, I wouldn't have believed you. And it would have depressed me. At this point I've learned to expect the unexpected and that really it's not something to get depressed about. Sophie is a wonderful blessing in our lives!!

Wednesday, September 15, 2010

Happy Due Date Sophie!

Today was Sophie's due date. It is also her 8 week birthday. For Owen's due date we took a picture of Owen and I with one brownie with 40 on it, signifying how many days old he was, and one brownie with a 0 on it, signifying his adjusted age:
From Owen


Today I put sprinkles on a cookie to make a 56, Sophie's age in days. We're not supposed to have food in Sophie's room, so it's covered in plastic wrap (and I quietly took the picture while the nurses weren't paying attention. Shhh! Don't tell! ).
From LGA Arrives!



For Owen, his due date was sort of a celebration. Today was more of a commemoration, as it's not exactly a happy occasion. To me it just accentuates the fact that she's still in the hospital. She is still working on nippling her feeds. She is doing better - I can tell her technique is improving - but she still tends to fall asleep half way through her bottle. It's looking more and more (to me at least) like she will be coming home with a feeding tube. The good news is that they can't find a reason for her not to be nippling better (the EEG and MRI of her brain look good, which was a big relief), so she may just be a slow learner or is still affected by the surgery. I was encouraged today by how long she was able to latch on to my breast when we tried breastfeeding - still not getting much milk, but that was definitely the best she's done so far.

In other news, Nana and Sophie now have the same haircut. :-) Unfortunately you can't tell from today's photo (who hired this photographer, anyway??):
From LGA Arrives!


I was feeling a bit depressed when I came home from the hospital tonight (Sophie was wide awake when I left, which makes it hard to leave), but I got home in time to put Owen to bed, which made me feel better. When Owen first started going to school (before he could talk very much), I dreamt of the day when Owen would be able to tell me what he did at school. Up until now he's been able to answer our questions about school, but mainly with one word answers. Tonight, as we sat in the dark in his room, he told me all about his day: reading to Sophie (the doll), playing with the parachute, playing with Ms. Jenny and cars, and what they did when the fire drill went bzzzzz like a bumble bee (they went outside). What a joy!!

Thursday, September 9, 2010

The Waiting Game

Today was a frustrating day for me. The main thing keeping Sophie in the hospital right now is her inability to nipple her feeds. I was at the hospital for 3 feeds today, and the max she took from the bottle was 15 CCs (her total feed is 64CCs now). If you ignore today and yesterday's daytime feeds she is still improving (they tell me she has nippled a full feeding several times at night), but I haven't been able to see the improvement the last couple of days. Part of the issue is that the docs thought she might have a Urinary Tract Infection (UTI). In order to test for a UTI, they took a urine sample from a catheter on Tuesday. She was not happy during that. That sample came back positive, but since they had a hard time getting the sample, they don't think it was a clean sample. So on Wednesday they took another sample, this time giving Sophie a sedative to calm her down. So far that sample has come back negative, but we won't know for sure until tomorrow. In the meantime they are giving her additional antibiotics (she was already on amoxicilan for her kidney) through an IV in case she does have a UTI. Hopefully tomorrow it will come back negative and they can take the IV out.

Once a day I try to put Sophie to breast to get her used to breastfeeding. She typically will latch on and suck for a few seconds, then spit out the nipple. She'll repeat that a few times then either become too upset or fall asleep. I am having a hard time seeing how the progression from bottle to breast will go. I know it should eventually happen, but it seems like a long way off.


From LGA Arrives!
Sophie "smiling" at Nana.

I am also missing frisbee. Fall league started this week. This is the 4th league I will miss since I tore my ACL in July '09. I didn't really mind not playing while I was pregnant because, well, pregnancy is a happy thing. Now I'm not playing because my injured leg is still bothering me. It's just not strong enough. I sometimes limp just walking around, let alone running. I know it will get better with exercise, but that, once again, seems like a long process.

I thought the good Lord had already blessed me with a good dose of patience, but apparently he wants to teach me more. :-) That's ok with me, as long as He helps me through it all, which I know He will.

Owen now has an attachment to a little dollhouse baby that he found at my parents. He calls her Sophie. He sometimes reads to her, and has her help him with the puzzles. It's really cute, but the doll is so small I'm worried we'll lose her (or that he'll choke on her!). I bought him a bigger doll to hopefully replace her, so we'll see.

We're a little worried about how Owen always wants us to help him with things. "Feed me" and "No, you do it!" are not uncommon words from his mouth. He's not very independent, which goes along with his shyness. So today we were surprised when he wanted to go down the stairs all by himself. (He did great, holding on to the railing and being careful.) So maybe there's hope!!

From Summer 2010

Owen with the little "Sophie".

Saturday, September 4, 2010

My favorite!

Owen loves his cars. That's his toy cars from the movie Cars. He currently has 2 Lightening McQueens, Mater, Sally, the Sheriff, Sarge, Fillmore, Ramone, Flo, Red, Tex, Chick Hicks, The King, and Mack Truck (and 20 more that he doesn't have yet from a bulk Ebay purchase). Keith loves how Owen says "Dustin Mellows" (a delivery truck from Radiator Spring's hey-day; a very small character, who appears in the movie for a total of two seconds), so he started calling that his favorite. It got to the point that Keith only had to ask, "Owen, can you do daddy a favor?" and Owen replies "Dustin Mellows!" (it really is incredibly cute!). (My second favorite is Alarm Clock for much the same reason) Now everyone has a favorite - Owen's is Sally; mine is Flo. I have no idea how Flo (the only car with an ultimate reference of course) became my favorite. That's just what Owen decided. (If anything, Mater is probably my actual favorite; but that's taken - it's Toolman's favorite.) Nana's favorite is Tex, which I rationalized as her dad (my grandfather) worked for Texaco, not that Owen would know that. Grandma's is Ramone and Grandpa's is Doc Hudson. So now every day I come home from the hospital, Owen comes running to say hi, then immediately runs and gets Flo and hands her to me. My response, of course, is "Flo!! My favorite!!".

And much like how everyone has a favorite car, everyone has an animal associated with them. Owen is, of course, a lion--king of our "jungle". I am a horse that he can ride. Joanne is a camel (she used to have a hump). The teacher at school is a sting ray (the teacher in Finding Nemo). Grandpa is a shark. Grandma is an elephant. Nana is unfortunately a piggy, but that's pretty good word association as her name is Peggy. But the most appropriate is for Tooman--dinosaur!

I'm not sure what Owen's favorite vegetable is (if only avocado was a vegetable... I would guess maybe corn, but he doesn't get that too often. I'll say edamame or sweet potato), but he's been pretty good at eating his lately. Keith found a trick to get him to eat his dinner when he was getting too distracted. Owen was naming the cars he had on the table, when Keith said, "Is that a green bean in your mouth?". This made Owen giggle and immediately stuff some green beans into his mouth. "Is that a carrot in your mouth?" In goes a carrot! Not sure how long this will work, but so far it's lasted two nights.


Yesterday we heard one of my favorite words these days: normal. As in Sophie's head MRI. Alleluia!!! That is such a big relief. Lord knows what myriad of things they could have found. Sophie is also starting to nipple better, so things are looking up. She still gets pretty upset with her gas, but hopefully the Mylocon they started her on yesterday will help. I'm considering giving up milk again (I used soy milk and soy yogurt when Owen was younger), but that still means a large supply of lactose-fortified breast milk that's in the freezer.

She is feisty (and LOUD) when she is upset. She tends to get the most upset after her 5pm feeding. The other day I had to change her diaper three times for poops within a few minutes of each other. And yesterday she got so upset that she spit up part of her feed so we had to change her outfit (it's hard to tell if she spit up because she was upset, or upset because she needed to spit up). I used to think it was her vitamins that upset her so much, but last night she hadn't even had her vitamins yet. My theory is that she knows that's the time I want to leave, so she does anything she can to get me to stay (and it works!). :-) My favorite day will be when I leave and she gets to go with me.

Wednesday, September 1, 2010

First Day of School

Monday was Owen's first day of "school" (daycare) in a new classroom and with new teachers. Drop off went amazingly well. We had expected it to be an ugly affair (he had last week off and had a lot of fun), but he immediately started playing as soon as we went in, and was unfazed when we left. Yesterday was pretty easy too. [In fact yesterday was really cute - I was reading to Owen and his friend Ashlyn read with us. When it was time for me to go I gave Owen a kiss goodbye. Then Ashlyn said she wanted a kiss too! So I gave her one. :-) ]Today he kept saying he wanted to go back to his old classroom, so I think the novelty has worn off. But I'm sure pretty soon he will love his new teachers as much as his old (and he still gets to see his old teachers - they go out to the playground together).

Dad says:

The bigger change, though, is the pickups. Owen's always been happy to see me when I pick him up. That hasn't changed. But before last week, I think there was fewer than five occasions when we left BLC in less than 20 minutes. During cooler months, we'd sit outside and have a snack (the remainder of lunch). During the summer, it was a minimum of three books. Now it's been three days in a row of Owen being ready to go, right away, with eagerness to go the hospital "to see Sophie" (but really he means the Lincoln Logs) and no complaints about it being hot or requests to be picked up.

Last night Owen woke up at 5am pretty upset. He kept saying "Owl scared me!!". His first nightmare (that he could tell us about)! We tried to get him to go back to sleep by letting him in our bed, but it didn't work, so poor Keith got up with him (and did two puzzles with him. He's really good with the underwater puzzle [he can place all the pieces on his own, with an occasional prompt on what type of fish he should be looking for), and this morning we did the solar system puzzle for the first time). We're pretty lucky that this doesn't happen more often; hopefully this is not a sign of things to come. If so we'll have to make a decision on the "let him in our bed or not" issue. But of course we'll let him in the bed. I think. Actually, there may not be room for him, as we may be trying a co-sleeper for Sophie and have some expectation of having her in our room for a while when she does finally come home, so a talkative/playful early AM Owen and a sleeping Sophie just won't mix.

Sophie is doing well, but there is some concern that she is not taking more of her feeds from her bottle. For a couple of days she was only taking 5-10CCs from a bottle, and the rest of her feed from her feeding tube. She took about 25CCs from me today at one of her feeds, so she is getting better, but they are still going to do a MRI on her head to make sure there isn't any neurological issue that is keeping her from eating more on her own. It seems a bit like overkill to me, but I guess it's good to make sure. They are delaying the second surgery (to fix her rear plumbing problem) for a couple of weeks to see if she improves on her feeds. If she doesn't, they may insert a feeding tube into her abdomen at the same time they do the surgery. This will allow her to go home before she goes up to full feeds. I'd rather not have to worry about having a feeding tube at home, but I guess it's better than having her stay in the NICU for a longer period of time. As it is she will be here past her due date of Sept 15th.

Last night when we were talking to a neurologist, he started off by commenting on how large Sophie's chart is. I joked back that now we get to add an MRI to the list. I'm sure the doc has seen even larger charts, but he's right - it's a lot to keep track of. My Mom mentioned today that I need to keep track of everything because doctors will ask for that kind of thing. She's right - I'm going to ask the nurse practitioner tomorrow if she has any ideas on how best I should do that. I know they give a copy of Sophie's chart to her pediatrician when she is discharged, but I'm not sure if they give us anything (or at least anything that I would understand).

One of the things I've learned here at the hospital is that while there are plenty of babies better off than Sophie, there are also ones worse off. I was reminded of that yesterday when Sophie changed pods and got new roommates. One of the goals for a baby in the room is listed as "stay alive". Wow. I continue to count our blessings.

From LGA Arrives!