From the perspective of the specialists...

...our daughter is doing great! As we went from one MRI follow-up appointment to another this week, I was so thankful to hear how pleased everyone is with her progress.

On Monday we saw the neurologist. He said that the MRI showed "stable vascular anatomy without new aneurysm or other adverse change since March." He is pleased with her physical, neurological and emotional development. (She was quite a flirt with him, which allowed him to see her precious personality.) He does not have any immediate plans to rescan her and would like to see her again in 6 months.

On Tuesday we saw the dermatologist. He said that he too was pleased with the MRI results, but felt that the hemangiomas on her cheek, neck and eye looked a little enlarged. He has put her on a two-week regiment of oral steroids with the hope this will give involution a boost! I will talk to him over the phone in two weeks to tell him of the progress and then he will see her again in 6 weeks.

On Wednesday we saw the ophthalmologist. She said that she was also pleased with the MRI results, but agreed that the hemangioma on her eye looked a little larger than it did a month ago (she actually got out the Christmas picture I sent her to compare...smart lady!). I also talked with her about our daughter's constant teariness, so she prescribed an additional topical steroid that we will drop in our daughter's nose in hopes that it will shrink down any swelling around her tear ducts. We will see her again in two months.

After finishing with all of these appointments, I called and talked with our pediatrician to update her on the new medications. She is so fantastic to talk with me and answer all of my questions. I am once again reminded of how blessed we are to have a medical team giving us a consistent message. Thank you God for doctors!

Now, for the best news of all...our daughter started saying "ma-ma-ma-ma" today! Hooray! This is probably the best Christmas gift she could give her mom!

Finally!

We've known since this summer that our daughter would have another scan in December to evaluate her hemangiomas, carotid artery and aortic arch. She was originally scheduled for a CT Angiogram for 12/6, and then scheduled to see her dermatologist, neurologist and ophthalmologist all on 12/9. We were so excited to get all of these appointments in before January 1st! What a great plan!

Then, after attending the PHACE Family Conference in Milwaukee this fall, Jason and I wondered about the possibility of changing the order for the CT Angiogram to an MRI/MRA. From what we learned, we thought an MRI/MRA would likely be able to see all the necessary images, but with MUCH less radiation. So, we asked our specialists, and we were told that we could easily change the orders without a problem. Woohoo!

Unfortunately , the orders for the new scan did not come through until 12/2, which meant we had to choose a new day for the scan. After some rescheduling and flexibility on the part of many specialists, we were able to get every appointment rescheduled for this week, but we would have to drive to San Marcos first thing Monday morning to make this happen. When I took our daughter on Monday morning for her MRI/MRA in San Marcos, she had quite a bit of congestion and a low grade fever, so the paramedic opted to delay the scan due to fears with the anesthesia. (I am thankful that they are cautious!)

So, once again, we relied on the flexibility of others, we moved the scans and all of the specialists appointments for the 3rd time and tried again.

Today we were successful. Our daughter was able to have her scans. The radiologist was able to get all of the pictures requested by the specialists. The paramedics that helped us were super kind and we were even able to do a blood draw for a PHACE Syndrome genetics study.

This 3rd round of rescheduling appointments with our specialists means that I will have to stay home with our daughter next week while Jason travels with the boys to Missouri to see family for the holidays. I hate that we're going to be apart for a few days during my holiday break, but I am thankful that all our our specialists are so accommodating and are "fitting us in" during this busy time of the year!

We received a call tonight from our daughter's pediatrician that the MRI/MRA report has already been received and that everything looks stable. Good news! We will see our specialists next week and will learn more details about the test results in the week to come. Stay tuned!

Who Knew?

So, I had the boys at the dentist over the Thanksgiving break for their regular check-ups and cleaning. While we were there I mentioned that they had a little sister at home. I said something like, "she is only ten months old, but she DOES have eight teeth". They practically insisted that I bring her in immediately. They informed me that they begin seeing children as young as six months.

So, yesterday our daughter had her first dentist appointment. It was almost comical. Though we do see a pediatric dentist, I'm not sure the dental hygienist has had previous opportunities to work with many babies. She asked me questions like, "Does your daughter currently take a pacifier, still drink from a bottle, suck her thumb or drink from a sippy cup?" REALLY? She's 10 months old...she does ALL of those things! The sarcastic side of me wanted to proclaim that our daughter is proudly drinking from our crystal stemware, but I withstood the temptation and politely replied that in fact our daughter does currently do all of those things, but that she's already learning to use a straw.

Then, when the dentist came in, I sat our daughter in my lap facing me. I then laid her down in the dentist's lap for him to do a quick exam. He was pleased with her teeth so far and we'll be back in 6 months. Who knew that babies so young were supposed to see the dentist?!?

A week of firsts

This week was a week of firsts for our daughter!

1. Our pediatrician was PLEASED with our daughter's weight...woohoo! She's gained enough weight and is now back on the growth curve (3rd percentile), which is a true answer to prayers.

2. Because our daughter has gained weight, she is now big enough to move to a "big girl" car seat! This caused some rearranging in the back seat of the Tahoe!

3. Because our daughter is no longer in the car carrier, she got to sit in a real high chair at a restaurant for the first time!

4. Our daughter's first Thanksgiving was spent in Houston with both of our families. She was given LOTS of attention by LOTS of people who love her! We tried giving her the turkey and rice dinner (baby food jar), but she would have NOTHING to do with it. She shuddered with her first few bites, then refused to eat any more.

5. FORWARD PROGRESS! I don't think it can officially be called "crawling", but she is making forward progress and is heading for toys. Her brothers have no idea what the next few months will bring them as she heads for THEIR toys!!!

Jason and I are thankful for our family and friends who love us and have prayed for us and supported us this year. Thanksgiving has a new meaning for our family!

Two pounds

Well, it worked. Our intervention of extra calories really worked. Our daughter had a weight check with her pediatrician this morning and in the last two weeks she's gained almost two pounds. She's still in the "less than third percentile" group, but we've been asked to keep up the intervention and bring her back in a couple of weeks to see if she continues to gain weight with this increased caloric intake! So, the next time you see her, you may not even recognize her!!!

Our daughter is pretty precious these days. Some of her favorite things include kisses on the neck, laughing at her brothers, playing peekaboo, and squealing at our new kitten. She is learning to drink from a cup and eat finger foods and is even pulling herself up to standing with dad's help. We are having so much fun watching her personality develop every day!

Calories! Calories! Calories!

Today at our daughter's 9 month appointment (can you believe she's 9 months old?!?), we were again encouraged to pump her full of calories. She remains in the less than 3rd percentile for her weight, and even lost weight in the last four weeks. She currently weighs only 13 lbs, 13 oz.

SOOOOOO...We're adding formula to her cereal for extra calories. We're feeding her cereal with every meal for extra calories. We're even adding an extra bottle to her day for extra calories. Our pediatrician is determined that our daughter will gain some weight in the next couple of weeks. We need to do all that we can to ensure our tiny little girl is as healthy as possible!

On another note, our recent appointments with her dermatologist and ophthalmologist have been very positive. Both specialists are encouraged with our daughter's development. We will have another round of tests and visit to the specialists in December.

PHACE Family Conference

It's been a month of new learning for us! Jason and I were able to take our daughter to Milwaukee this month for the PHACE Family Conference. It was hosted by the Wisconsin Children's Hospital and was more than I could have ever imagined. There was not a cost to families for the conference, and the resources they provided to us were amazing! The 10-12 specialists there gave of their time to come and share with us. They were all incredibly kind to stick around and allow us to ask specific questions regarding our own children and their individual stories.

Some exciting things:

1. Our daughter's first plane ride...she did GREAT!

2. Some fun in a new city...we stayed one block of off Lake Michigan and took some time to eat dinner at Miller Park (wouldn't you know it, the Brewers were playing the Astros in Houston while we were there)!

3. Great weather...on the warmest day, the high was 68 degrees!

Some things we learned:

1. Doctors from around the world continue to collaborate regularly to create medical protocols to help families who have children with PHACE Syndrome. There is LOTS of research going on right now and 5 new articles have been published this year in medical journals.

2. Genetics studies are happening right now. The three of us were able to donate blood and be a part!

3. Through conversation with a specialist, we were encouraged to begin using our daughter's Timolol eye drop on her nose and lips to hopefully reduce the redness in these areas. This idea had never crossed our minds.

4. We are truly blessed to have the medical team who has been collaborating to care for our daughter for the last 8 months. We heard stories from families who have to truly fight for care for their children. Because of this team, our daughter began receiving care before she was three weeks old. We will never know how severe her hemangioma could have grown without this level of care!

5. Grammy & Grampy have enough energy to spend 5 days with the boys while we're out of town!

This photo was taken of the conference participants. The older children are sitting on the front row and many of the babies are sitting in their mother's laps on row two.

Blessed!

I've been reminded this weekend how lucky Jason and I are to be the parents of three precious children.

Thank you God for our oldest son. We are constantly amazed at his ability to reason and understand. I am thankful for his sensitive spirit and caring nature. He is a sports fanatic and will talk baseball with anyone who will listen! He is a true treasure!

Thank you God for our middle child who makes us laugh. His strong will lets us know that he will one day be a leader. He is snuggly and sneaks in extra kisses and hugs every night at bed time! His smile can turn any frown upside down!

Thank you God for our baby girl. We love watching her learn new things like rolling over and sitting up. Her squeals for attention show us that she loves to be in the limelight. She is a gift who reminds me each day of God's love for us.

I love being a mom and can't wait to see what God has in store for these precious children!!!

She's growing up!

Our daughter is so much fun these days. She watches her older brothers in amazement and loves the attention they give her. She coos at her daddy and tries to match pitch with us as we talk to her. She's also been learning to play with her tongue and make raspberry sounds which makes us laugh! This weekend, we worked on "mama, dada, and buba" with no luck, but it sure is fun watching her study our mouth as we make these sounds over and over and over. It won't be long before she's talking in sentences.

This weekend I was finally able to pack away her 0-3 month clothes. She fits pretty well in the 3-6 month clothes, so I decided it was time! I didn't cry (which is a miracle)...maybe it's because God gave me so much time with her being so tiny!

Tonight she rolled all over her room chasing her brother. She even got stuck under her baby bed. I can't wait to see the fun tricks she has in store for us! She truly keeps us entertained!

A round of 6 month appointments

The last two weeks were filled with appointments with all of our daughter's specialists to discuss the MRI results from their perspective. Here is a snippet of what we learned:

Ophthalmologist: The hemangiomas around our daughter's left eye are shrinking. We learned that the orbit hemangiomas are around the top part of the eye including the eye lid which is why it swelled closed so quickly in her first few weeks of life with the growth of the hemangioma. Our daughter seems to be using both eyes equally which leads us to believe her vision is good.

Dermatologist: The color of the birthmark on our daughter's face continues to fade. The hemangioma on the back of her neck is unchanged, all other hemangiomas have decreased in size.

Pediatrician: Our daughter continues to measure small in her head size and length (10th percentile). Her weight continues to fall off of the growth curve (less than 3rd percentile).

Neurologist: Our daughter seems to be developing typically. She is meeting her milestones as expected. Her brain is developing myelin which shows that it is "working".

The best news of all is that all of the doctors agree that our daughter is healthy enough that her follow-up CT Angiogram that was originally scheduled for October has been pushed back to December. Everyone is encouraged by all that they've seen in the last couple of weeks.

Prayers are working!

Follow-up MRI

Today is the day of our daughter's follow-up MRI. As a mom, I've been looking forward to today for a couple of months. I REALLY needed to hear from doctors that our daughter is looking as good on the inside as she does on the outside.

Our day of tests started with a few frustrations, but our daughter did great. We have already received a call from the neurologist with some very positive news:

1. Our daughter's internal hemangiomas are regressing.

2. Our daughter's carotid artery seems to be carrying blood as needed.

3. Our daughter's brain is developing typically.

The official MRI report won't be available until Monday, but this initial news is a true encouragement. We will meet with all of her speciaists over the next two weeks to get their opinions, but this is FANTASTIC news!

Prayer Warriors

For over five months we've been encouraged by friends and family members that they are praying for our daughter. We have received cards, messages on Facebook, phone calls and emails. Though I've heard these words of encouragement time and time again, last weekend I actually got to see some of these prayer warriors "with skin on"!

To celebrate the long Fourth of July weekend, we made a very quick trip to Oklahoma and Missouri to visit family members who had not yet met our daughter. It was very important to me that we make this trip now that our daughter is healthy enough to be loved-on by other people. I wanted them to get to enjoy her snuggles as much as we do! I also wanted my boys to be able to make some memories with these family members who love them so much!

Our first stop was Ada, Oklahoma where she got to meet one of her great-grandfathers. Though this stop was for only a few hours, we had a great visit (and some yummy Mexican food)!

Our next stop was Springfield, Missouri where she got to meet aunts, uncles, cousins and another set of great-grandparents. We were in Springfield for July 4th and were able to attend a patriotic worship service at their home church. Memaw was excited to get to introduce us to her friends in her Sunday School class. I am convinced that every great-grandparent is proud of their kiddos, but this "show-off" was different. I quickly realized that the reason she wanted us to meet these friends is because they have been praying for us in very specific ways. She wanted them to be able to put a face with our names and see how good our daughter looks.

These intercessors called us by name and reminded us of specific ways they're praying for us. I was overwhelmed with emotion realizing that this handfull of people represents the many people who I don't even know who have whispered prayers on our behalf.

I looked up a definition for "Intercessory Prayer" tonight and here's what I found: Intercessory prayer is prayer for others. An intercessor is one who takes the place of another or pleads another's case. One study Bible defines intercession as "holy, believing, persevering prayer whereby someone pleads with God on behalf of another or others who desperately need God's intervention."

I am thankful for the many prayer warriors who take time out of their day to lift my daughter/family up in prayer. God's people are good!

Typically Developing!

Our daughter had an appointment earlier this week with her pediatrician to follow up on her weight gain, head size and length. Good news...she's staying on the curve! Her head size and length are both in the 10th percentile and her weight is in the 5th percentile...but she's stable! Though she is 5 months old and is still wearing size 0-3 month clothes, she made the progress that you would expect from any other child. The pediatrician deemed her "typically developing"...HOORAY! If this growth trend continues, she's projected to be a little over five foot tall and just over 100 lbs as an adult...she certainly did not get these petite genes from her 5'11" mother!

We have another round of tests (MRI/MRA) later in July and will then see all of our specialists again (ophthalmologist, dermatologist, neurologist and pediatrician). We will repeat this cycle in October with a CT Angiogram. We are trusting that our daughter looks as good on the inside as she does on the outside!

Not the "twinkle" I was expecting

When I woke up this morning, I was full of joy. Today was to be the first day our daughter would attend New Hope (our church home). Because of some of the medications she's been taking, her immune system has been compromised, but with a change in medication and another round of routine inoculations, the doctors declared her healthy enough to begin getting out and about.

The last four and a half months have brought many changes to our lives, but one of the changes that has impacted me the most was my inability to get to attend worship with my family. Because of Jason's obligations at the church each Sunday (he's on staff there), it was not an option for him to stay home while I attended worship. Each week I would get up with the boys, get them around for church and then the three of them would head off while I stayed home taking care of our daughter. I loved the precious hours of quiet when she and I could take a mid-morning nap on my bed while watching portions of the Great Hills worship service on TV, but I missed corporate worship.

So today would be the day. I posted a verse on Facebook this morning that captured my anticipation: "A twinkle in the eye means joy in the heart, and good news makes you feel fit as a fiddle. (Proverbs 15:30)" I really thought that I would "twinkle" all day...but that was not to be the case.

The plan for the morning was for me to wake up and help get the boys out the door for church nice and early so that they could attend their Hope Group Class (Sunday School), and then I would meet them in time for the late worship service. Things went very smoothly. They were out the door in time, my daughter and I got to steal a few quiet minutes together before getting ourselves ready to go. I pondered over which bow would be the cutest for her debut. And we were off at just the time I'd planned.

On the way to church I turned on KLOVE and heard a few songs of praise that brought tears to my eyes. I was so thankful to be heading to worship and whispered aloud a prayer of thanksgiving. As I parked the car and began walking into church carrying our daughter in her car carrier, more tears. Then, all it took was a hug from a sweet friend who was happy to see us, and the tears began to flow. They wouldn't stop for over an hour. I was not anticipating the many emotions that were consuming my heart...JOY to be in worship, LOVE for my friends that I haven't seen in over four months, PRIDE for my new baby, and FEAR...this was the one I didn't expect. I was afraid! Not for the germs that could make our daughter sick, but for the second looks, comments and questions that would arise. My heart hurts! I don't want my daughter to become a spectacle because she doesn't look the same as the other babies.

I know that these feelings are perfectly normal. I know that my church family loves and supports us more than I will ever be able to comprehend. But I also know that these second looks, comments and questions about our daughter are the new "normal" for us. I know that my heart will find comfort in the kindness of those who love us, but I need to also be constantly prepared for those who say or do things that are hurtful. I know that my boys are watching me to see how I react to these times and that they will take their cues from me.

The final song in our music set today was "I Surrender All". (How does God always know just the song we'll need at just the right time?) I had to just sit back and listen through the first three verses because my heart was not truly ready to surrender. But, by the last verse, the tears were flowing as I once again surrendered all to Him!

All to Jesus I surrender

Lord I give [My Daughter] to Thee

Fill me with Thy love and power

Let Thy blessing fall on me!

I Surrender All!!!

My precious children after our first day together at church (and a Burger King lunch...note the crown!).

A petite little girl

The last two weeks have been full of more good news regarding our daughter's health. Last week we met with our daughter's neurologist. Our last visit there was in February during our time of initial diagnosis. This appointment was originally scheduled as a routine follow-up, but we had several questions for the neurologist:

1. How do we know what is happening with the internal hemangiomas (tumors)? We know that the external ones are showing progress, but we have been able to give them additional topical medications/injections that the internal ones haven't had.

2. How can we monitor the loopy-loop of the carotid artery to insure that we're not headed for an aneurism or seizures?

3. What is the cause of the small head size and is it impacting her development?

The neurologist was great! He was very encouraged by her neurological development and felt that she is meeting her milestones at the same rate as a typically developing four-month old. He is going to put our daughter on a regiment of alternating scans to monitor the internal hemangiomas (MRI/MRA) and the blood flow through the carotid artery (CT Angiogram). We will begin this rotation in July and will have alternating scans every three months.

Then, this week our daughter had an appointment with her pediatrician. She was able to get all of her inoculations except for the Rotovirus vaccine (because it's live). The pediatrician thought she looked great. Our daughter is measuring consistently in the 10-20th percentile and is very proportionate. This means that we may have a petite little girl on our hands. One of my grandmothers was only 5 foot tall...so she could come by it very naturally!!!

Thank you for your continued prayers for our family. We were given good news that in just a few weeks our daughter's immune system will be strong enough for her to begin being around other children. By that time she will have been completely off her steroid for more than a month and will have two rounds of vaccinations. I am excited for the day we can bring her to church and my work to meet so many people who have been praying for us!

Great News

On Monday our daughter had a follow-up appointment with her dermatologist. He thought she looked better than ever. He did not notice any swelling and liked how wide open her eye is. He made the decision to go ahead and take her off of her steroid...HOORAY! This is the day we've been waiting for since February 19th! This means that she will hopefully be able to be around other children by the end of the month.

During our appointment, our daughter was really personable. She was very alert and laughed and talked with the three doctors in the room. The dermatologist commented how pleased he was to see that she was on track neurologically. He was not overly concerned about her head size. He did say that it's odd that she's "crossing lines" as she falls off the growth chart. He commented that he would talk with his colleagues in Houston to see if there could be a correlation between head size and PHACE Syndrome. We see the neurologist at the end of next week where we'll talk more about her head size.

I spoke with our pediatrician today to let her know the good news from yesterday's dermatologist appointment. She asked us to keep our daughter secluded through the end of the month. Then, after she has her four month shots, she'd feel much more confident about allowing her to be out around other children. HOORAY!!!

We see the ophthalmologist tomorrow. Hopefully she'll be just as pleased with the progress!

Not what we expected

During a prenatal ultrasound, we first found out that our daughter had some enlarged ventricles in her brain. The doctors indicated that they would check to make sure her head didn't measure abnormally large after birth which might indicate water on the brain. We were told this would be monitored very regularly. We never thought that her head size would ever measure small...but that's what is happening.

When our daughter was born, her head size was in the 50th percentile. Now, at three months, her head size is measuring lower than the 25th percentile. Our pediatrician says that it could be due to the medications that our daughter has been taking for the last couple or months. She also wonders if her carotid artery abnormalities may have anything to do with it. So, she wants to check into it further to make sure it's not due to something serious.

Our pediatrician called our daughter's neurologist. They discussed the milestones that our daughter has reached already (rolling over, laughing, tracking objects with her eyes, etc). Because her development seems typical, the neurologist did not think it was necessary to see her immediately. We already have an appointment with him at the end of the month, and he thought it would be ok to wait and see our daughter then.

Please join us as we celebrate the developmental milestones that our daughter is meeting on a regular basis!!! Please also pray that the doctors will have wisdom in the coming weeks to order any further tests that might help to determine the reason for her head to be so small.

Timolol

This week our daughter had an appointment with her ophthalmologist. The doctor was pleased with what she observed through her tests. Our daughter seems to be tracking objects well and using both eyes equally. We were asked to continue patching her good eye for about an hour a day so that her left eye can have additional practice. Soon, our daughter will be old enough that she can tear the patch off of her eye, so the more patching we can do now, the better!

During our appointment, I discussed the use of a drug called Timolol with the ophthalmologist. (Our dermotologist mentioned Timolol to me as an option for the first time last week.) This eye drop is used for glaucoma patients, but is the same type of drug (beta-blocker) as the Propranolol (blood pressure medication) that our daughter is taking orally. The thought is that by using the eye drop twice a day, the hemangioma around the eye would be encouraged to reduce in size...kind of like an extra boost. There is some very positive research regarding this type of medication in other patients with PHACE Syndrome. Applying an eye drop for an infant on Propranolol is a little complicated and will take both parents in order to be successful. We can also rub the serum directly on her face which may be able to reach some of the hemangiomas close to the surface of her skin.

We tried the Timolol for the first time Tuesday night. It was a challenge, but one tiny drop did get in her eye. We also rubbed some extra drops on the pink places on her face. The next morning we noticed increased swelling in her left eye. We were suspicious that there might be some type of allergic reaction. Unfortunately, almost 48 hours later, she's still pretty swollen around the eye and on the back of her neck. After talking to the doctors, the more likely scenario is that the growth of the hemangiomas is increasing rapidly. We will try another drop again tonight to see if we see a similar reaction.

If the hemangiomas really are growing again, we have the option of increasing our daughter's oral steroid again...we don't like this option because of how this drug compromises her immune system. We also have the option of doing additional steroid injections which is the outpatient surgery that she had in March. To complicate matters, my 12 week maternity leave is officially over tomorrow and I'm headed back to work on Monday. Our daughter still is not healthy enough to be around other children, so our mothers are coming from Houston to tag-team taking care of our daughter during the week. This schedule will continue through the month of May. I am grateful for the sacrifice our mothers are willing to make to support us!

Please pray that we make the best decision regarding next steps for our daughter's medical treatment. Please also pray for us as I go back to work next week. It will be a week of many tears as we all adjust to this new schedule!

Regression?

Our daughter had a follow-up appointment with her dermatologist on Monday. It's hard for me to believe it's been a month since we've seen him. I had such high hopes for this appointment. She's made such good progress and we've slowly been lowering her oral steroid dosage. I truly thought that the oral steroid which compromises her immune system would be completely stopped. Unfortunately, this was not the case.

It has been exactly a month since our daughter underwent the outpatient procedure where they injected steroid into her left eyelid, cheek and back of the neck. This medication typically lingers for 3-4 weeks. We are now at the end of that timeframe. The dermatologist noted that our daughter's left eye looked a little more puffy today than he remembered it looking the last time he saw her. He also noticed that her left cheek felt warm (which indicated additional blood flow to the area). He is very interested to see what her body will do now that the majority of the injected steroid is out of her system. He asked us to watch her very closely over the next week.

Because of these indicators, the dermatologist did not adjust our daughter's medications at all. She is still on Propranolol, Zantac and what he refers to as a "spit's worth" of the steroid, but he admitted that we may need to increase the oral steroid dosage again should the swelling return. He also talked to us about a topical medication called Timolol which is a beta-blocker like Propranolol, but in the form of a cream. This may be something we try in the near future but will most likely only benefit those hemangiomas that are closest to the surface of the skin.

So, for now, because our daughter will remain on the steroid, she will not be able to have the live Rotavirus vaccine. She will also continue to have a compromised immune system which means she shouldn't be around other children.

Thank you for your continued prayers for our daughter and our family!

No appointments...ha!

Last week was scheduled to be our daughter's first week since her birth where she had no scheduled doctor's appointments. We decided that we'd do a quick nurse visit to check on her blood pressure, but no specialists. Her blood pressure was off the charts high, so the doctor decided to do another adjustment to her steroid and Propranolol medication. We continue to head in the right direction with meds!!!

Well, while we were with the nurse on Wednesday having our daughter's blood pressure checked, I received a text message from my husband that he was being admitted to the hospital with pancreatitis. I knew that his stomach had been bothering him that morning, but I had no idea it was so serious. I didn't even know what a pancreas did!!! His pain was terrible. For the first two days they didn't even let him have any water to drink. Pancreatitis is a slow recovery. He was able to be released from the hospital on Easter Sunday. So, our first week of no doctor's appointments with our daughter found us in the hospital for five days with dad.

We are so thankful for our friends and family who helped us out last week and who continue to support us this week. You guys are amazing and I don't know how we would have made it without you!

Headed in the Right Direction

We had an appointment today with the pediatrician where we discussed the great progress our daughter has made since her steroid injections two weeks ago. The swelling in her left eye, cheek and back of her neck are drastically reduced. She is using her eye more and more. She doesn't like the eye patching, but it getting more and more used to the idea.

Today the pediatrician and I talked a lot about medications. We decided to go ahead and give our daughter three of the four inoculations that a typical 2-month old baby would receive. The only shot she didn't receive is the live rotavirus vaccine that could be potentially harmful to to her compromised immune system. But, this weekend we will decrease her steroid again and increase the Propranalol to almost double our current dosage. All of the doctors have great hopes that our daughter will be completely off the oral steroid in the next couple of weeks. Coming off the steroid is key in enabling our daughter to be around other children.

I had to sit down tonight and write an email to my coworkers telling them officially that I'm not coming back to work on Monday as we originally planned. Our daughter simply isn't yet healthy enough to be around other children in a daycare-type setting. If her health continues to improve at our current rate of progress, she may be healthy enough to be around other children towards the end of April.

We are encouraged by today's appointment. Currently our daughter's blood pressure is good and we need it to remain strong as we make these adjustments with her medication. She was diagnosed with an upper respiratory infection today and we need this to clear up. Please join in in praying that our daughter's health will continue heading in the right direction.

Patches

Our daughter had another appointment today with her pediatric ophthalmologist. The doctor was pleased with how well her eye is opening and encouraged us to begin a routine of using patches. We are to patch her good eye for at least an hour of awake time each day. (The one hour doesn't have to be consecutive time, but the longer, the better.) Through patching, our daughter's vision in her left eye will develop more quickly because she won't be able to rely on her right eye to see.

I had a conversation with the doctor today regarding what age we'll be able to begin screening her vision to check for vision loss. I was told that a true vision screening can't be done until a child is between 3-4 years old.

So, for now, patching. We will see this doctor again in four weeks!

A day of celebration!!!

Today is a great day! :)

We began the day with a VERY early 8:00 dermatologist appointment at Dell Children's. This early appointment means that my alarm went off at 5:30 (which hasn't happened in a very long time). The purpose of the appointment was twofold. First, we needed to monitor our daughter's blood pressure again to see if increasing the Propranalol caused it to drop any lower than it already was. Second, he wanted to monitor the results from the steroid injections last Friday.

I anticipated heavy rush-hour traffic on the way to the appointment, but because of spring break, we actually got there 20 minutes early. (For those of you who know me well...this NEVER happens!) I thought I'd use a few minutes sitting in the parking garage to be productive and make a list of things I needed to get done today. While digging in the armrest of the car for a piece of blank paper to jot down a few notes, I found Jason's sunglasses that have been missing for over a month. This was our first cause for celebration!

When we were called back into the exam room for our appointment, the nurse prepared the fancy new blood-pressure machine that supposedly gives much more accurate readings than their old machine. At first we had no luck. We tried to find our daughter's blood pressure twice on each arm, but the blood pressure cuff would inflate with air and then give an error message after it deflated. In the back of my mind I was wondering if her blood pressure was so low that the machine was unable to read it. I was scared! But then, the nurse tried finding the blood pressure on our daughter's leg. Not only did the blood pressure register, but it was WELL in the range of normal. This means that we can leave the Propranalol dosage where it is for now and will possibly be able to increase it again in the near future. Another cause for celebration!

Then, it was time to visit with the doctor. He asked me lots of questions and gave our daughter a thorough examination of her face and neck where she received the steroid injections just five days ago. He agrees with us that the results are amazing. Her eye is now open about 75% of the way 90% of the time. This is an improvement from being open only about 25% of the way 25% of the time. Being able to use the eye is critical in our daughter developing vision in that eye. As he examined her cheek and back of her neck, he noticed that these tumors are much smaller and softer. The color of the birthmark is also much lighter in several places. More celebrating!

Because her blood pressure looks good and the steroid injections are working, we are able to cut the oral steroid dosage in half. The oral steroid is the medication which compromises our daughter's immune system and has some pretty strong side-effects. Cutting this medication in half is a cause for even more celebrating!

From our daughter's very first appointment with her pediatrician the first day she was home from the hospital, we have been scheduling appointments, experiencing medical tests and procedures, experimenting with medication combinations, and monitoring the effects. With each appointment I felt like we were hearing, "Well, that didn't work the way we hoped it would...let's try something else!" Today was different. We heard, "This is EXACTLY what we wanted to see!" We're on the right track and are truly celebrating good news.

The most exciting reason for celebration occurred as I was walking out of the doctor's office when the dermatologist said, "I'll see you in a month!"

Seeing clearly

From the very first suspicion that our daughter had a hemangioma on her forehead over her left eye, we were told that our top priority would be keeping watch on her eye. When the eye is so swollen that it can't open, it is unable to develop clear vision. We were told that the eye is like a muscle...use it or lose it.

During her first couple of weeks of life, our daughter's facial hemangioma was small enough that it didn't affect her vision at all, but as the hemangioma began to grow, her eye grew increasingly swollen to the point that she was virtually unable to open her left eye at all. When we received the MRI/MRA results in late February, our pediatrician was very concerned about her vision because the test results enabled the doctor's to see the extensiveness of the hemangioma under the skin. To hopefully reduce the inflammation and get the eye open, the doctors started her on the steroid immediately.

Though both the steroid and Propranalol made good progress in reducing swelling so that she could open her eye, it was still closed about 50% of her awake time, and the doctor's didn't think this was enough progress. So, today we had day surgery at Dell Children's Hospital in Austin. I had no idea how much my heart would heart when the nurse took her out of my arms and walked down the hall with her for the procedure. I am thankful for a friend (who didn't even know we were at the hospital) who called with an unrelated question. Our 15 minute phone conversation was probably the best thing for me!

The doctors declared the procedure a good success. Our ophthalmologist was able to do three injections right into her eyelid at a very surface level. The dermatologist did several injections in both her left cheek and back of her neck. The steroid will last for about a month in these locations to keep the swelling at bay. If necessary, we can do another round of injections at that time. We are once again thankful for a team of doctor's who collaborates to do what's best for her!

As I write this blog, it's only been about 10 hours since her procedure, and it's amazing the results we're seeing already. Her cheek is so kissably soft! We are praying that this first round of injections is all she'll need. The doctors hope that we will be able to increase her oral medications to a level where they'll maintain the reduced swelling. She's sleeping well due to some of the anesthesia that's still in her system.

Please join us in praying that our daughter's vision will develop clearly and that the days where her eye didn't open will not have a long-lasting impact!

A Good Day of News

Today we had a day full of good information regarding our daughter's health. We were able to get back on the Propranalol (a blood pressure medication) at a very low dose which shrinks the size of her hemangiomas. Her blood pressure is still a little low, so we're starting the medication slowly. We were able to see great progress with this medication the first 10 days she took it and can only imagine what a difference it will continue to make in her progress.

The dermatologist officially gave our daughter a diagnosis of PHACE Syndrome today. It sounds funny, but we are encouraged to have a label to give the many health complications we've seen in our daughter. We will be adding her name to the official PHACE registry with Texas Children's Hospital which will keep us unformed of the latest research and current studies regarding this extremely uncommon occurrence.

The other piece of good news is that the CT angiogram that we had on Friday has come back. The neurologist feels that he was able to gather all the data he needs which means that she won't need the traditional angiogram (which involves a catheter and complete sedation) at this time. The CT angiogram shows that where a typical carotid artery makes a "C" type curve, our daughter's does two "loopy-loops". We're not sure why, but everything looks structurally sound, so he's not recommending any type of procedure or further testing at this time. He still wants to consult with other colleagues, but believes we'll just follow-up on the artery in 6-12 months.

Thank you for your prayers for our family! We appreciate the meals you've provided, emails you've sent and gift cards you've given. We are truly thankful for your friendships and for how you've shown love to our family!!!

There will continue to be doctor's appointments, medications and minor procedures in the weeks to come, bur for now, our daughter's prognosis is very positive!
:)

An update on our daughter

Today our daughter is one month old. The first month of her life has brought on lots of medical testing, specialists and consultations due to the birthmark on her face. We're hearing mostly good reports sprinkled with some concerns. We saw a pediatric cardiologist on Monday and her heart looks good. He detected an "innocent murmur", but isn't concerned at all. We visited the pediatric dermatologist who was able to go ahead and put her on a new, very aggressive medication to begin shrinking the hemangiomas (which are also internal throughout her body, not just on her face). We also visited the pediatric ophthalmologist on Tuesday who is pleased with her progress on the new medicaiton. We are already seeing the swelling in her eye decreasing. She's opening her eye much wider for much longer periods of time. Since we know the external hemangiomas are decreasing in size, we know the internal ones are getting smaller as well. We visited with a pediatric neurologist on Wednesday who helped us understand the details from the MRI/MRA that were completed last week. There are some concerns with her left carotid artery being "curvey". They want to do some additional testing to determine if this is a "normal-curvey", or if we are at risk for an aneurysm. The neurologist is consulting with a neurosurgical team who will recommend our next test (probably either a CAT scan or angiogram). We should hear more by the middle of next week. On top of all of that, we think that the steroid has caused her to develop thrush.


It's been a LONG first month of her life, but I wouldn't trade the snuggles for anything! She's just so tiny and precious. She's beginning to hold up her head and make eye contact more and more. The boys don't really know about her's health complications because the doctor's appointments have all been while they're at school, which is a good thing. They would both be sick with worry if he had any idea what we've been facing. They are both so smitten with her!!!


Thanks again for your prayers and for taking good care of us! As we gain more answers to our many questions, I'm feeling a little better about being more open with everyone!

First Time Blogger

Many of our friends and family members have started blogs to keep people informed about events happening in their lives, so I thought we'd start one too!