Thursday, December 25, 2014

Merry Christmas!

We had the blessing of being able to visit the Shrine of Our Lady of La Leche in St. Augustine, Florida this past weekend. Our Lady of La Leche has special meaning to us because a little over a year ago, the NICU nurses thought Lily wouldn't be able to use a bottle, let alone breastfeed. After a novena to Our Lady of La Leche, she did! That enabled her to come home, where she's been exclusively breastfed. It was such a joy to be able to nurse Lily at the Shrine of Our Lady of La Leche, and thank her for her intercession. Thank you for praying that novena with us last year.




Our Lady of La Leche, Mother of our Savior and Mother of Mothers, pray for us!

We also want to wish you all a very Merry Christmas! May our Lord and Savior Jesus Christ bless you this coming year!

 

Monday, December 1, 2014

Coming up next....

Lest you think that things might be slowing down around here now that Lily is one….

Lily’s recent CT Scan shows that one of the sutures (the metopic suture) on her skull has closed, resulting in the sort of pinched look of her head, forehead and up. We’ll be getting an MRI done soon to check on her brain and fluid in some ventricles and to see what the neurosurgeon thinks about it all. The plastic surgeon is pretty sure she’s going to need to have surgery to correct the shape of her skull, in order to give her brain as much room as they can for it to grow. If there is too much fluid, there may be shunts placed. We won’t know what is going to happen until after the MRI and meeting with the neurosurgeon on December 31st. (Happy New Year’s Eve, I guess.) We have a surgery date scheduled for January 12th, just in case.

We’ve increased Lily’s physical therapy to two times a week and have started the process of getting a customized wheelchair for her. She is not getting the support she needs from the highchair for feeding and being able to interact with us while she’s in it. She’s outgrowing her car seat carrier, and without good trunk and head support, she won’t be able to ride in the stroller comfortably.
We will continue to work on getting her sitting and mobile, but this is the best option for her and us at this time. If she does walk, she’ll be the cutest little girl walking around. If she never walks? She’ll be the cutest little girl in a wheelchair. Win win, right?

It has been discovered that she’s gotten bored with bananas, so we’re branching out. Current favorite food- mangoes. At our follow up with the GI doctor two weeks ago, we found out she has gained about two pounds and 4 centimeters in the past two months. She's on the low end, but she’s on the chart!
Her head has also grown another half centimeter.

Seizures are still happening- she’s had a few since our last update. Now that I’ve done a little research, I know that they are tonic seizures, and though scary when it’s happening, she’s fine when they’re done.
This post was written by another mom of a child who has seizures. It's definitely how I feel about it all.

As always, thank you for your continued prayers!

Monday, November 24, 2014

Lily's Birthday Party


We had a little party for Lily on Sunday afternoon. Nothing fancy, just a time for friends to play at the playground and have a cupcake (or two).
After a nap, Lily had a great time! Each time someone came up to tell her Happy Birthday, she smiled and got excited. She doesn't mind being the center of attention! She also loves to be outside, so she was quite pleased.
We're not quite ready for Lily to be eating cupcakes yet, but she did have a little taste of the frosting....and what kid doesn't love frosting?

All in all, we had a lovely time and it was indeed a happy birthday.


Pre-party nap
Mommy and Lily

video

Sunday, November 23, 2014

Happy First Birthday!

At 1:37 pm on November 23, 2013, Lily was dead.
At 1:37 pm on November 23, 2014, Lily is alive!

This year has been heart wrenching and beautiful. It has been pretty much exactly the opposite of what we expected it to be on November 22nd last year, yet a complete blessing, after what happened on the 23rd.

We’ve learned a lot of medical terms, met a lot of doctors, learned a lot about ourselves, our children, and our family as a whole.

We have been blessed with meals, childcare, house cleaning, Christmas presents, money, time, and prayers. We are so thankful for all of you who have cared for us, the other kids, and Lily.

We don’t know how many days, weeks, months, or years Lily will have with us. We know that every day we have with her is a blessing, and that her worth is not dependent on what she can or cannot do.

Many thanks again to the doctors and nurses that saved Lily’s life last year, and those that continue to care for her.

Though we were warned that she would be basically vegetative…she is anything but. This little girl has strong opinions, the best smile, tries hard, and loves loves loves.

Happy Birthday, sweet baby! We love you so much it feels like our hearts might burst!

St. Lillian, St. Faustina, Our Lady of Loreto, and her Holy Angel, pray for her!


And though she be but little, she is fierce.   
- William Shakespeare, A Midsummer Night's Dream




Monday, October 27, 2014

CT Scan, take 2

Thank you all for praying for Lily this week, with special intercession from St. Jude.
We met with the neurologist on Friday and he said we can up her dose one more time, if she has another seizure (she had one on Wednesday). We're also looking into some alternative medications, since the other two prescription medications he suggested have pretty depressing potential side effects.
We did find out that Lily has gained about 11 ounces this past week, and is now over 15 pounds! Her head circumference has also grown about a half an inch. We are very happy about this!
She has had a renewed interest in food the past two weeks and her speech therapist said Lily is doing a very good job. Lily also rolled over again, though she was unhappy once she got to her tummy. Little inch-stones, making progress.

Tomorrow morning Lily will be having another CT Scan, to check on her skull bones. She will most likely have to be lightly sedated for this, which means no food 4 hours before hand. That could mean a grumpy Baby and frazzled Mom. Your prayers are appreciated (it's at 11 am).

Happy Feast of Sts. Simon and Jude tomorrow!

Sunday, October 19, 2014

Seizures and St. Jude

This month Lily has started having two different kinds of seizures, along with the little jerky ones she has everyday. One of them has her leg muscles tighten and her feet turn into each other. It happens quickly and in a cluster of 4 or 5 times, usually after she wakes up. It has only seemed to bothered her once so far. The other type is a lot more disconcerting, as she goes blank and rigid, and either holds her breath or can't breath, for about 15-20 seconds. This has happened three times so far, again, not long after she wakes up from a nap. A trip to the ER and a call into her neurologist, and her anti-seizure medicine has been upped again. When we brought her home, she was on .51 mL, now she's up to 2.7 mL. There is going to be talk about adding/switching medicine when we meet with the neurologist next Friday.

So- today starts a novena to St. Jude, patron of Hopeless Causes and Desperate Situations. Would you join us in praying and asking for Lily's seizures to stop? All the prayers can be found here, and you can sign up for reminder emails.

Thank you!



Thursday, October 2, 2014

Prayer Request

For the past couple of weeks, Lily has been having really intense gas that causes her to cry for anywhere from a half hour to an hour and a half at a time. Often this occurs in the evening when we are already exhausted from the day. We've tried every kind of technique to relieve her discomfort, but all to no avail. Eventually she becomes so exhausted herself from crying for an hour straight that she falls asleep. Sometimes we are able to get her to burp and that will make her feel better, but again, it usually doesn't happen for a good amount of time.

Lily has also not been sleeping well on her own. She will sleep in Laura's lap sometimes for a half hour to forty-five minutes, but this means Laura is unable to do other things during that time. When Lily is laid down when she is sleeping, only five minutes later and she will wake up. To make matters worse, she is not yet able to sit up on her own or crawl around and doesn't like to lay on her back all the time, and only occasionally will she sit in a baby chair without getting upset. This means she has to be held constantly when she is awake--and she is always awake during the day.

As you can imagine, this is very stressful and overwhelming for Laura when I am not around to help due to work, class, or working on my dissertation.

So we are asking for you to please pray that Lily will sleep better and longer on her own, that her gas problems go away, and for strength and perseverance for Laura and that she does not feel overwhelmed every day.

Thank you.

Monday, September 15, 2014

Summer Update

Our main excitement: Three weeks ago, Lily got a fever and was vomiting. Though her fever had been low, it spiked the second night and she woke up at midnight and started having a febrile seizure. It was terrible. We called 911 and the EMTs were able to stop the seizure in the ambulance 20 minutes later. She arrived at the hospital wet from being doused with water and surrounded by ice packs trying to get her 103.8 fever down. Tests were run and she had a bad urinary tract infection. After being poked six or seven times trying to get an IV in her little dehydrated veins, the nurses gave up and gave her a shot of antibiotics. They were finally able to get the IV in the next afternoon on the first try, though she had still been vomiting throughout the day. More antibiotics, anti-vomit meds, and lots of snuggles, and we were coming home with a much happier Lily after two and a half days in the hospital. She seems all better now and we'll just have to be extra careful to keep fevers down and if there is any more vomiting, we'll be going in for tests and an IV before things get out of control.


Feeling better at the hospital
Chewing on her hands

After looking closely at Lily's 8 hour EEG, the neurologist determined that she is actually having seizures (small ones between 10-15 seconds). We upped her medicine pretty quickly and the seizures seemed to get worse- they bothered her more than they had previously. She's been on the higher dose for over a month now, and while she's still having seizures (between 2-3 seconds), they're back to not bothering her. We meet with the neurologist in a week and will probably be increasing her dose again. We'll just do it a little slower than before. If we can't get them under control we'll have to switch medicine. The good news is that apparently the seizures aren't causing any new damage, but are just a result of the injury.

Lily was measured for a helmet but then her measurements were just a little too good and it was denied. She was remeasured (just to make sure) and we haven't heard back yet. It feels like the ridge is getting a little flatter, but maybe we're just imagining it.
Her head circumference is pretty small and hadn't grown any at her last checkup a few weeks ago. This isn't surprising, again a result of her injury.

Physical therapy is going well when Lily is in the mood for it. She's getting better head control turning from side to side, though she still turns really quickly, or gets tired and her head gets droopy. She has a hard time keeping it mid-line. She still doesn't like to be on her belly, but is able to lift her head up well through the fussing. Lily can prop sit for a few seconds and is getting better about putting weight on her arms, but it will still be a while before she is actually sitting. She isn't very strong in her trunk, so it makes balancing difficult.

We had started puréed food with her and she seemed to really like it, taking little tastes. She was able to eat 5-7 teaspoons throughout the day, but recently has been much less interested in eating from the spoon. I don't know if I'm just timing it wrong or if it's a sign of things to come. She is still nursing well. However, she isn't gaining as much weight as the doctors would like (she was just under 13 lbs at her 9 month check up). She is getting longer though, and looks proportional, not real skinny.



Sarah likes to help feed Lily

One of the biggest problems right now is that she isn't napping well. She will sleep for a half hour if you hold her or 10-15 minutes if you try to put her down. Every once in a while she'll have a good long nap, but it's few and far between. This is exhausting for us and for her- she's just not getting the sleep she needs. She does okay during the night about half the time. It's just tiring and frustrating.

She was fitted for her hearing aids 3 weeks ago (just before ending up at the hospital), and there is some confusion as to whether she will need to have another sedated hearing test (at a hospital over an hour and a half away) or not. Each audiologist feels a different way about it and doesn't trust the ability or opinion of the other. We're stuck in the middle of it and can't get anything done- I can't believe it is this difficult. Throw in needing prescriptions from the pediatrician and a new ENT over an hour away that we'd have to see and...who knows what will actually get done.

Even though Lily is getting closer to a year old, in lots of ways she's still sort of like a 3 month old in her physical abilities and she still looks much younger than she is.



At home, she loves the vacuum and the ice dispenser. At Mass, she loves the loud organ and everyone singing- she likes to join in! She thinks we make funny faces and sounds and Danny got her to laugh when he blew on her belly. She usually just gives a smile and a little "heh!" Sometimes her shoulders go up when she does it- it's pretty funny.







 Thank you for your continued prayers!

Wednesday, July 2, 2014

June and a little July

June has come and gone, and with it four doctor visits and weekly physical therapy sessions.
Lily saw:
- the NICU follow up nurse: The nurse was very pleased with how Lily is doing- following a black and white face from side to side, head control is getting better, and Lily started babbling to her when asked. We'll go back at the beginning of January.
- the ophthalmologist, who said that she can see (which we already knew) and that she has astigmatism in both eyes. We'll go back in six months to check on her again.
- the pediatric plastic surgeon, who was happy she doesn't need surgery for her skull and set her up to get fitted for a helmet. It will probably be a few weeks before she actually gets it, but it will be pink with butterflies on it and she will be as adorable as can be.
- the EEG nurses, since we're still concerned about the twitchy/jerky movements that are still going on. We weren't okay with starting a wean from the seizure medicine until we were for sure certain that the movements weren't seizures, since they seem a little different from how they were for the other EEG she had. That one was just an hour, so this one was 8 hours. The preliminary findings are that there are sharp increases in electrical activity, but not necessarily seizures. The neurologist has upped her medicine and we'll see if anything is different in a week and go from there. Most likely, we'll be heading in for a 24 hour EEG. We must get this sorted out. They don't usually bother her unless something else is wrong- if she's hungry, or mad Mom isn't holding her, or especially if she's tired.

PT is going well. We've discovered that Lily loves to bounce on a ball, and so we're working on trunk control and sitting on the ball. She's starting to get the hang of sitting on the floor and can prop herself up for a few seconds. All of the practice of rolling over from back to tummy has paid off: she rolled all by herself today! She's even tolerating being on her tummy more, though she maxes out at about 5 minutes.
The idea of Lily doing things on her own time is a little different from the reality of it, especially since the other kids met physical milestones right at or just before they were supposed to. Really though, we're thrilled at how far she has come and will take a roll at seven months! Hopefully she'll keep at it. She hasn't laughed since the first night and day after she did, but we still get lots of smiles.

In the past month, her head has grown half a centimeter, and though it doesn't seem like much, we're happy with any growth! She's gaining weight slowly but surely and is proportional with height/weight, though she is pretty small- just 12 lbs, 7 oz.

Thank you for rejoicing with us in Lily's accomplishments and praying for her and us. It means so much!

Continued prayers are appreciated for:
- her growth and development
- that she would do well at her feeding evaluation next Friday
- that the EEG would be clear and that the doctors will know how to help her


Lily and Jacob are best friends
                                                      

Lily making the EEG look easy


Lots of naps were taken during the EEG


Smiles with Daddy




Saturday, May 31, 2014

Results from Wednesday's CT Scan

Thank you all for your prayers Wednesday- they were absolutely tangible. Lily hadn't eaten in 13 hours and you would have never known...which is quite different from every other day! Really, the day couldn't have gone better behavior-wise with all the kids.

She slept through the CT scan and was sedated for the hearing test. After trying (and failing) twice before to get all the readings the audiologist would need for hearing aids, we wanted to make sure this would be the last try. Lily was just lightly sedated (she still wiggled a little and was waking up just as the test was finishing), so it was nothing to worry about. I wish they would tell you that beforehand- it would save me (Laura) unnecessary worrying. At any rate, the doctor got everything she needed and confirmed a lesser general loss in Lily's left ear and a greater specific loss in her right. The next step is getting hearing aids. I'm thinking bright pink!

Lily during the hearing test.

We then met with the pediatric neurosurgeon to discuss the CT results. We got to see the 3D scan of her skull and brain and received the news that the doctor doesn't recommend going forward with surgery, but rather waiting and watching. The bones are not yet fused together and so still have room to grow. The main problem is that her brain just isn't growing, which means that her skull isn't going to grow. She also has some fluid in the back behind her brain which the doctor didn't seem concerned about, and so we didn't ask any questions about it, but are now wondering about. After looking at the CT, the doctor also thought that Lily wouldn't be able to see, but when he saw her he could see that she was definitely alert and could see. We don't know what to think about the doctor thinking she wouldn't be able to see based on the CT, but we are pleased that Lily surprised him.

The neurosurgeon and plastic surgeon will be meeting on Monday to discuss Lily and see if they're on the same page about things. We have a NICU follow up on Tuesday and we'll be able to ask questions we've come up with since Wednesday.

Other than the exciting news of no surgery, the most wonderful thing that happened this week is Lily's first laugh! She had been making a little squeal sort of noise, but Tuesday evening we got real laughs. She laughed again on Wednesday, so we knew it wasn't just a fluke.



Please continue to pray for Lily's progress and especially for her brain to grow!

Tuesday, May 27, 2014

Prayers for tomorrow's tests

We have to leave before 6:30 in the morning tomorrow for Lily's CT Scan. We're actually able to get her sedated hearing test done at the same time, so two birds, one stone.

Prayers for a safe trip there (with a hungry Lily) and back, for the tests to go well, and for the other four kids (and us) to not go crazy while waiting at the hospital are most appreciated. (We're a little nervous, too.)

Thank you all so very much.


Friday, May 23, 2014

Neuro follow up

Lily had a follow up with her neurologist on Tuesday and it went very well. She's gained some weight from her pediatrician visit last month (we'll see what he says next week....Lily is not a fan of formula and so we've been keeping on just nursing), though her head hasn't seemed to have grown any. He thought it is a good thing that we're getting the CT Scan next week and that he's pretty sure that she'll need surgery, too.

The neurologist was "cautiously optimistic" about Lily. He tested her reflexes again and said that she was doing better than our first visit with him. He said again he wasn't concerned with her twitchy movements and that after her surgery in July we could start an eight week wean of her seizure medicine. That's fantastic! There's always a chance that she could have seizures later on down the road, but since she hasn't had any yet, it's probably better to be off the medicine than on it.

He said that he wouldn't discharge her until she was at least three, but that he even brought up the possibility (however small!) was very encouraging. We left there happy and the doctor said he would keep Lily in his prayers. Can't beat that.


Lily has been keeping up with PT once a week and has been improving. She can roll to both sides, from back to belly with a little help, and belly to back without help (usually). Her head control is getting better, though she can still be a little wobbly. She was able to sit by herself for a second a few times, but doesn't yet know how to put an arm out to prop her up or stop the fall.

The most exciting thing Lily is doing is bringing her hands up to her face. She was doing it a little while she slept or was sleepy, but she's now doing it while wide awake and she's working hard to do it! We get so excited when she brings her hands together or brings her hand up to her mouth or even rubs her nose. She's not able to keep them there for long, but we're seeing improvements every week.



                                                         Happy 6 month birthday, today!



Thank you for your prayers!

Specific requests:

We've got the CT Scan next Wednesday that she'll be sedated for- that it would go well and that the next steps for her care would be clear, that Lily would continue to gain weight and that she (and especially her head) would continue to grow.



Thursday, April 24, 2014

Good news, bad news

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!




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





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!

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!


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!


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.

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! 


Monday, February 10, 2014

Hearing Test

Lily had a follow up hearing test Monday afternoon to check her right ear. The two hearing tests she had while still in the NICU showed hearing loss in that ear. This test confirmed that she had mild to moderate hearing loss, but they're not sure yet what part is actually not working correctly. The eardrum is moving, and that's good, so we'll have to go back again to do another test to see if the bones are working. We only got halfway through the left ear test because she woke up and was wiggling too much, but so far that ear seems to be doing better than the right.

Sunday evening Lily did a good job of turning her head to look side to side at two toys hanging on opposite sides of her play mat and was able to keep her head up straight while on her belly for almost a minute. She has also been able to roll herself over from tummy to back and scoot a little forward when she's on her tummy. She's building up her muscles and knows how to get what she wants!

Thank you all for your continued prayers.

Friday, February 7, 2014

Ultrasound Results

You all are some really good pray-ers (and God is good!). Lily did so well yesterday in the car and during the ultrasound. We just got the call with the results- there isn't any more bleeding! It's so nice to have good news.

Thank you all for praying!

Thursday, February 6, 2014

Prayers for today's ultrasound

Prayers would be appreciated today specifically for Lily to do well during the ultrasound of her brain, for the bleed to be resolved, and for her contentment in the car on the way to and from the appointment. Many, many thanks.

Saturday, February 1, 2014

Neurologist

This week Lily had her two month well child check up on Tuesday. She weighed 9 lb. 15 oz., which is just shy of half of what Jacob weighs, at 18 months! She’s also grown 4 centimeters since she was born.
Thursday was her first follow up with the pediatric neurologist. He has ordered another ultrasound of her brain to check the little bleed that was found on the MRI and brain ultrasound while she was still in the NICU, to make sure it’s getting smaller and not bigger. We’ll be doing that next Thursday, the 6th.
We also noticed that she’s got a bit of a ridge on the top of her head, and the neurologist wasn’t sure about it, but to ask the pediatrician. (He didn’t mention anything about it on Tuesday when we saw him.) If he thinks it’s not going to resolve itself as her brain gets bigger, then we’ll be referred to a neurosurgeon for his opinion, though we’d have to go to Miami for that.
We’ve got a follow up with the neurologist in 3 months and will schedule an EEG to see if Lily is having seizures (there was evidence of them when she was in the NICU) and whether she needs to be on the anti-seizure medication she’s currently on.
Next week Lily will have a developmental specialist coming to our house (this will be twice a month) and will start her twice weekly physical therapy sessions.

Please pray for her cooperation during the ultrasound, for the bleed to be resolved, and for her complete recovery! Thank you!

And now…smiling pictures!



Saturday, January 18, 2014

Colic and Smiles

Last Friday Lily’s cry seemed weak and hoarse, after sounding fine on Thursday. It didn't improve over the weekend and was so pitiful, we called the pediatrician on Monday to see if we needed to come in. We were able to get in and since Lily didn’t have any other problems, (no fever or cough, no signs of seizure, etc.), the doctor didn’t seem worried and that her voice just may have been hoarse from crying so much. The previous few days, and especially nights, had been pretty rough. We told him that if this had been any other child, we probably would have ignored it, (sorry, kids), but since it was Lily, we were concerned. He said that everyone is sort of on hyper alert with her, and that’s okay. He also said Laura could start drinking chamomile tea and that we could give some to Lily to help with the colic that she seems to have. The past few nights have been much better, thank goodness.
She weighed in at 9 lb., 4 oz..,so she’s still gaining weight well and the doctor commented that she’s got good head control.

We’ve seen a few sort-of smiles from Lily here and there but yesterday got some real ones (and a few oohs and coos!). Maybe we’ll get lucky and be able to get a picture soon. She is very good at focusing on faces and turns to look at all the kids when they come over and talk to her and tell her how much they love her. They’re even starting their own physical therapy with her, trying to get her to hold onto dinosaurs.

Saturday, January 11, 2014

Therapy

Lily is 7 weeks old today! She had her first Occupational and Physical Therapy evaluation appointments this week. The occupational therapist said that Lily was doing really well and that unless anything changes, she won't need to come for therapy, which is really good. The physical therapist said that one of her shoulders seemed a little tight and gave us different stretching exercises to do with Lily, mostly as preventative. We'll be going to physical therapy twice a week, but the therapist was again pleased with how Lily is doing.

Please keep praying for her!