A blessed and happy Easter to all of you!
The good news: Lily has great doctors taking care of her.
The bad news: We keep having to meet new ones.
Lily had her four month pediatrician check up on Monday (a month late- she turned 5 months on Wednesday!). She hasn't gained much weight and he has asked us to start supplementing one bottle of formula a day. He has also recommended we start occupational and speech therapy (to assess her ability to eat with a spoon and to help her in this goal), along with the physical therapy Lily is currently receiving. Lily's doctor is also concerned about the shape of her head (it's longer instead of roundish) and that it's not following the curve on the growth chart. He referred us to a pediatric plastic surgeon who we met with today.
The plastic surgeon told us Lily needs a CT scan to see the bones in her skull to determine whether she will need surgery to correct them or if she'd be able to just wear a helmet. He's been doing this for over 15 years and is fairly certain she will need surgery. We will have to go to Miami for the sedated CT scan at the end of May and the surgery, which lasts a few hours and requires a 2-4 day hospital stay, will be at the beginning of July. Apparently this is a surgery that is done every week, but that only offers some comfort...strangely enough, something about operating on skull bones and also involving a neurosurgeon is unsettling.
Prayers that Lily happily drinks the formula and gains weight are appreciated. We were told that Lily may lose the ability to eat on her own as she gets older, and that has been a constant worry.
Our Lady of La Leche, pray for Lily!
Thursday, April 24, 2014
Friday, April 18, 2014
Divine Mercy Novena
We invite you to join in praying the Divine Mercy Novena with us, which begins today.
Divine Mercy Sunday, the Second Sunday after Easter, held no particular meaning for us until last year, when we found out we were expecting Lily that day. We feel it was no coincidence. We would have five children, ages 6 and under- yes, “Jesus, I trust in you!”
As we were discussing names, we had settled on Lillian, but I (Laura) wasn’t sure about the middle name we had picked. I started thinking about the Divine Mercy and really felt like we needed to name Lily after St. Faustina, the apostle of Divine Mercy.
This year is especially significant because Pope John Paul II, who canonized St. Faustina and who declared Divine Mercy Sunday, will be beatified on this day.
You can find out more about Divine Mercy Sunday here: https://www.ewtn.com/devotionals/mercy/feast.htm
And join in praying the Novena with us here:
http://www.praymorenovenas.com/divine-mercy-novena/
Our little Lillian Faustina Maria
Divine Mercy Sunday, the Second Sunday after Easter, held no particular meaning for us until last year, when we found out we were expecting Lily that day. We feel it was no coincidence. We would have five children, ages 6 and under- yes, “Jesus, I trust in you!”
As we were discussing names, we had settled on Lillian, but I (Laura) wasn’t sure about the middle name we had picked. I started thinking about the Divine Mercy and really felt like we needed to name Lily after St. Faustina, the apostle of Divine Mercy.
This year is especially significant because Pope John Paul II, who canonized St. Faustina and who declared Divine Mercy Sunday, will be beatified on this day.
You can find out more about Divine Mercy Sunday here: https://www.ewtn.com/devotionals/mercy/feast.htm
And join in praying the Novena with us here:
http://www.praymorenovenas.com/divine-mercy-novena/
Tuesday, April 1, 2014
Hearing Test
Lily had her hearing test today. She was only asleep for about an hour and so they weren't able to do all of the testing that they need to do, but it was confirmed (again) that there is moderate to severe loss in her right ear, and that there is some loss in the left ear.
Because it's just nearly impossible to get good readings from wiggly babies, and because she needs to have the full range of decibels tested, we're going to have a sedated hearing test (it will only last an hour or so). That test will enable the doctors to figure out what kind of hearing aid she should have.
The sedated test won't be done until the summer.
Thanks for your prayers! We've had a busy last few weeks!
Because it's just nearly impossible to get good readings from wiggly babies, and because she needs to have the full range of decibels tested, we're going to have a sedated hearing test (it will only last an hour or so). That test will enable the doctors to figure out what kind of hearing aid she should have.
The sedated test won't be done until the summer.
Thanks for your prayers! We've had a busy last few weeks!
Monday, March 31, 2014
EEG Results
We just received the call about the EEG- the jerks that Lily is experiencing are not seizures, but just little jerks and the neurologist is not concerned about them. We are very happy about that! He'll be talking with us about them at her next neurology appointment in May.
Thank you, all!
Thank you, all!
Sunday, March 30, 2014
Last Week
Last week Lily finally had her first physical therapy appointment. The therapist is going to come to our house weekly, which makes things much easier on us. She said that Lily's muscle tone is good and our first task is to help her bring her head forward and straight, since she extends her head back to look up and her neck muscles are getting tight.
We also took Lily for an EEG on Thursday to check on the spasms that she has. We just want to make sure they're not little seizures, or if they are, get them under control. We haven't heard back yet about the results.
Since the last post, her gagging/mucusy cough has lessened considerably, to maybe once every few days. She is also getting so much better at being in her car seat, thank goodness.
This next week she has a big hearing test that she needs to be still (and preferably sleeping) for. Prayers that that goes well and we can be done in one session are most appreciated.
Thank you all!
We also took Lily for an EEG on Thursday to check on the spasms that she has. We just want to make sure they're not little seizures, or if they are, get them under control. We haven't heard back yet about the results.
Since the last post, her gagging/mucusy cough has lessened considerably, to maybe once every few days. She is also getting so much better at being in her car seat, thank goodness.
This next week she has a big hearing test that she needs to be still (and preferably sleeping) for. Prayers that that goes well and we can be done in one session are most appreciated.
Thank you all!
Friday, March 14, 2014
Cardiologist
Lily had an echocardiogram and EKG this morning to make sure the little hole that was present in her heart at birth had closed. It has! The cardiologist has declared her heart healthy and doesn't want to see her again. That's what we want to hear!
Thank you for you continued prayers.
Thank you for you continued prayers.
Tuesday, February 25, 2014
Neonatal Development Appointment
This past Thursday, Lily had a neonatal development checkup. The nurse practitioner adjusted Lily’s age back four weeks (since she was born at 36 weeks + 6 days) while doing her assessment and was quite pleased with how she’s doing. Lily was able to track a picture all the way across (when she was only expected to go half way), stopped when she heard a sound (and it was by her right ear which has the hearing loss), and she had gained almost a pound since her pediatrician appointment just a few weeks ago. Her neck strength and control is getting better, but she is still a bit wobbly.
So- Lily is doing well. That isn’t to say there isn’t anything that could be better though. She has little arm spasms that we’re pretty sure aren’t seizures and could just be a result of the brain injury. We’ll be asking about that at our next neurology appointment unless something changes that really worries us. She also has trouble with mucus getting stuck in her throat and she gags and chokes a little on it. This happens mostly in the morning just after waking, but does happen occasionally throughout the day. Lily also arches her back and neck. The nurse said that premature babies do this, though it’s likely connected to the brain injury as well.
There’s a prayer list for you then!
Lily’s next appointment is at the cardiologist in March for an EKG and echo cardiogram to make sure that the little hole in her heart has closed up as the doctors expected it to.
Here is Lily with her big sister Sarah who turned 3 this past week!
So- Lily is doing well. That isn’t to say there isn’t anything that could be better though. She has little arm spasms that we’re pretty sure aren’t seizures and could just be a result of the brain injury. We’ll be asking about that at our next neurology appointment unless something changes that really worries us. She also has trouble with mucus getting stuck in her throat and she gags and chokes a little on it. This happens mostly in the morning just after waking, but does happen occasionally throughout the day. Lily also arches her back and neck. The nurse said that premature babies do this, though it’s likely connected to the brain injury as well.
There’s a prayer list for you then!
Lily’s next appointment is at the cardiologist in March for an EKG and echo cardiogram to make sure that the little hole in her heart has closed up as the doctors expected it to.
Here is Lily with her big sister Sarah who turned 3 this past week!
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