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:

And join in praying the Novena with us here:

                                                        Our little Lillian Faustina Maria