Update on L*ily's Ultrasound

Last Wed, L*ily had an ultrasound done on her head as a follow up to the one done the night of her birth. The purpose of it is to check on the ventricles in her brain. Her ventricles were enlarged throughout the pregnancy, which was the reason for all the ultrasounds and the fears of the unknown related to it. When she was scanned on Oct 29, they found that the ventricles had dramatically decreased in size and decided then to do nothing but wait and rescan at 2-3 months. They felt that the additional fluid on her brain had decreased enough that they didn't need to do anything more and were hopeful that it had resolved itself. I spoke with our pediatrician by phone last Thursday to discuss the results of last week's scan - she had talked to the radiologist - the scan showed that the fluid in the ventricles has increased slightly since birth. She had put a call in to the neurosurgeon we met with after my MRI during pregnancy to see what he wanted to do next. She called back on Saturday to let us know that the neurosurgeon has decided he doesn't need to see her yet but wants us to wait another month and have her rescanned then because the increase is slight at this point. The pediatrician feels that the fact that L is doing so well developmentally is encouraging in the face of this news and advised us to try not to get too anxious at this point. I was very glad she didn't wait until Mon to call us, but the report, while it may be nothing, was hard to hear. We were hopeful that this issue was resolved. We are praying that her ventricles do not enlarge anymore, and that this issue continues to resolve itself as it appeared to have done at birth. We are encouraged that L is doing so well otherwise and as I said last post, is on track developmentally - smiling, cooing, drooling, and very strong. Please pray for peace for us as we continue to rest in yet another still unknown prognosis.

Happy New Year! (and an update on L*ily)

It's still January so its not too late to say that! Sorry we have been "away" from the blog - we had lots of holidays, which were lovely followed by a week of appointments for L*ily (5 total - 6 if you include the one that got rescheduled after we got there!)

So here is L*ily's update, and I have also posted some about the holidays so keep reading...

Last week, L*ily had 5 appts - 3 of which are related to 2 of what I've been referring to as "the big 3" - heart, ears, and brain. These are the areas L*ily needed additional follow up in. So Monday the 4th, we headed to the clinic in subzero temps to see the audiologist (ears) and then the pediatric cardiologist. When we arrived for the audiology appt, we were told the audiologist was not there (I found out later she got her schedule mixed up), and we would need to come back the next day to see her before our ENT (Ear, Nose Throat) appt the following afternoon. So, I read a magazine for the first time in a long time, pumped in the bathroom (lovely - sorry, TMI?) and went to the cardiology appt only to find out that they had the time wrong (my letter from them said a different time than their computer did). It was a long, crazy day and I was kicking myself for not bringing a book, but I did get lots of apologies, 2 free parking passes (it would have been about $7 with validated parking) and $5 to Brueggers Bagels - a perfect place for someone who can't eat wheat! (I got the soup instead).

HEART: L*ily had an EKG and echo-cardiogram, and then we met with a cardiologist. The echo showed that L still has a small VSD - a hole or a murmur. However, the EKG determined that the murmur is not affecting her heart's functioning. Because of this, the cardiologist said it may still close on its own and we don't need to come back for a year. She (the cardiologist) also shared with me that her cousin who is 40 days younger than her has Down's Syndrome, and we had a wonderful discussion about how her cousin has affected her life. L is a wiggler, so during her EKG, she would get the first of the prongs off by the time they got to the 6th or 7th. The nurse finally had to get another person to help!

EARS: L saw an audiologist for an ABR test and then she saw an ENT. The ABR tests her hearing at high, medium, and low frequencies by measuring brain waves. L had previously failed the newborn hearing screen in her left ear - twice. This time, she passed at the high and medium but not the low. It does appear at this point that if she has an actual hearing loss, it is minor. Both the audiologist and the ENT were pleased but want to retest her within a couple months because her small ear canals make it difficult to get an accurate reading.

L also went to her pediatrician for her two month check. She was 8 lbs 11 oz! She is gaining well - she is in the 4% for a 2-mo old and the 50% for the adjusted Down's growth chart. L showed off for her again - smiling, holding her head up, and even drooling - all signs that she is on track developmentally right now. The pediatrician kept telling me what a "good baby" I have and was so excited to see her hitting these milestones. We also met again with L's early childhood teacher from the school district. They will continue to come out once a month until L's 3rd birthday to help monitor her development, etc. D*ave was able to be there and L was awake for the visit this time, and it was nice to report L's developmental milestones to her. Our next meeting with them will be with the OT.

Yesterday, we went to the hospital for a follow-up ultrasound of L's brain to see where things are at with the ventricles that were enlarged before birth. We are waiting on the results of that scan. All in all, the appts went fairly well - it is hard not having definitive answers for much of this, but we are learning to rest in the unknown and we take comfort in the good reports so far and the excellence of care we are receiving.

Ch*ristmases

We had 3 C*hristmases as usual this year: with Dav*e's mom, with the P*atricks, and with the S*undseths. My brother, M*ark, who moved to B*oston in Nov '08 came for a week at C*hristmas. It was a very special time with him and Z*oe was so excited to see him. For weeks ahead of time, when asked about C*hristmas coming, she would say "Un*cle M*ark is coming from B*oston!"
And L's other uncles (P*hil and J*oel respectively):

I am quite proud to say that one of Z's favorite gift categories is still books! (Hers and L*ily's!)
I think her cousins feel the same way:

Z also loved her new kitchen!
Here is Z and L's cousin, O*liver, age 4.75:
And his twin brother, N*oah:

Every year we buy Z and now L an ornament. This year it was sock monkeys (both also have big sock monkeys made by auntie E*mily). When I told Z this, she picked one out for herself and hung it on the tree, and then put L's next to her in the bassinette.
L after the big C*hristmas meal:

When it was all said and done, it was a beautiful C*hristmas season. We were so blessed to spend it with all of our family and to have beautiful memories of and for Z and now L.

Ch*ristmas Program

Z sang in the C*hristmas program at church - well, sort of. She sang at all the practices but she was mute for the actual performance. Then she sang the song all the way home and still asks me to sing it with her when we sing each night before bed. Oh well. It was fun to do and she was adorable.

Annual Cookie Bake

Every year, the women of my (J*en's) family get together to bake cookies. This year we were at E*m's new house for this (and later for C*hristmas). Needless to say, I (J*en) contributed the least amount of labor but had a blast anyway. The rest of the bunch were quite focused and after several years, I think we finally have a bit of an increase in efficiency.
L*ily came along too, and as you can see, she was a big help with sifting powdered sugar for the Mexican Wedding Cakes (Gluten Free!)

Z*oe and A*uggie were also big helpers. Auntie M*eagan gave each of them a plate of their own to decorate. Of course it was more like decorate one, eat one, decorate one, eat one.
M*eagan has wonderful tools for some serious cookie decorating. You can see how well we did! (I mean "we"!)