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!