Tuesday, April 28, 2009

Our Heart Hero's Half Birthday

Well, today is officially one half year with our ladybug, Maia! We weren't sure when she was diagnosed in utero last August if we would get to have this celebration, but here it is! She is 6 months old today! Hooray!

It is 6 months and NOT a year yet,...cupcakes and cake in general were out of the question. Anyone for sweet potatoes and oatmeal birthday surprise??? Hmmm???

We have had a mild rollercoaster ride compared to so many who have received the diagnosis of Hypoplastic Right Heart Syndrome for their child, but nonetheless it has been a rollercoaster year.

Helen, her sitter, and Maia celebrating today

6 months ago we heard the loud cries of our daughter in the labor and delivery room at Children's Hospital of Philadelphia. She had some major lung capacity going on and we were so very thankful. We had been praying for months to be able to hear that cry on the day she was born. It was so beautiful.

Now we hear that cry and we are still so very thankful. It might get a bit wearisome at 2 a.m. in the morning, but please Lord, please never allow us to become callous to that wonderful and beautiful cry!

Maia, today, wearing Daddy's Baseball cap OR is it balancing on her? Hee hee

The day after her birth she received her valvuloplasty, massaging her pulmonary valve open with a tiny balloon threaded from her femoral artery, the balloon, smaller than the width of a hair! Amazing! She had two transfusions that day, but that beautiful chest remained scar-free, hopefully we can keep it that way, but however the Lord sees fit. We will praise Him.

5 1/2 months ago Maia was discharged from the hospital and we made our way back to our home in New Jersey. We never expected to leave so early. We thought for sure that we would be in Philly for a good 4 to 6 weeks. That is what they had prepared us for. That was being realistically optmistic. But God's reality prevailed!

For the first month we saw the pediatric cardiologist each week. Then the next month, every two weeks. Then the next month we waited four weeks. Now we are waiting 8 weeks.
The next procedure should be in about 6 to 18 months depending on the growth of her heart and the blood flow. Another valvuloplasty will be in order.
Milestones she has completed since her six months on Earth...
Laughing at and being totally mesmerized by her big brother
Reaching for toes to suck on and chew
Eating sweet potatoes, berries and bananas, peas, applesauce, and oatmeal
Finding her voice. She rarely cries, instead she yells at us to get our attention. Okay, Maia!
Sitting up, almost by herself.
Turning over and scooting on her belly forward and backward (not really crawling right now)
Friends and family have rallied around Maia and our family from the time of Maia's diagnosis, birth, homecoming, and the Love keeps going on! Thank you so much! I know Maia would tell you if she could!
We have truly enjoyed our Little Ladybug these past 6 months. Thank you, Father, for this time with her. She is a little dynamo of strength and energy. Thank you how You designed her so perfectly!
Maia, is truly our Heart Hero!

Sunday, April 26, 2009

This One Is For Uncle Joel

My parents have a picture of Joel when he was about this age doing the same exact pose. Gotta love those yummy toes!

Saturday, April 25, 2009

Matters of the HEART

If the above slideshow does not appear, click on this link that will take you to the photos.
I think we are finally completely acclimated back to New Jersey life after a full week back at work. It was a rough start at first with major sleep deprivation. Last weekend, Gideon wanted to shave off all his hair. I don't know if it was because he saw his Grandma Judy over spring break and it inspired him once more or that he just likes that haircut now. :)

Maia has had a pretty good week. She seems bigger and bigger everyday. I don't know if she is having an allergic reaction to one of the foods we have introduced lately, but I think I am going to get rid of the banana-oranges gerber mix and see if that is the culprit. She has a rash under he chin and she seems very itchy all over. Benydryl has been helping and so has the cortizone cream, but she is still very frustrated by it all.
We were a bit taken aback on Thursday when we learned that the cardiologist appointment we have been anticipating for the past two months, but especially this last week, was to be postponed. We are having insurance issues once more, but it appears this is more of a problem with the physician's office and their policies than it is with our insurance. Please be in prayer that we can solve this issue quickly. Maia needs to be monitored and if we had known there was going to be issues earlier on, we would have tried to find a new pediatric cardiologist. It was very disheartening to learn this news the DAY BEFORE the appointment, to say the least.

Again, it is time to trust in the LORD in all circumstances. As Proverbs 3:5 and 6 states.

"Trust in the Lord with all your HEART

and lean NOT on your own understanding,

In all of your ways, acknowledge HIM

and HE will direct your paths."

We want his perfect wisdom in this situation. We don't want to be rash and try to figure this out in our own imperfect minds and emotions, especially emotions right now. May the right doors open and the wrong doors close.


Oh, Kenny is in Sandy Cove, MD, for a men's retreat this weekend. Ah! He has a balcony overlooking the Chesapeake Bay and he gets to spend time in prayer and devotion on the bay on one of the most beautiful warm weekends we have had all of 2009. It can't get any better than that! Have fun sweet husband and daddy!
We are also so very proud of Kenny's brother, Joseph, who graduated at the top of his medics class in the Navy this weekend! Way to go, Joseph! If you would like to see some pics of the family celebrating his accomplishment in Chicago you can go to my sis-n-law, Meaghan's website, Into the Blue. Just click on her blog title and you'll go right there.
Also in Sutherland News, Brooks, Meaghan and Joseph's youngest son, has been suffering terribly from allergies. He had been officially diagnosed with a few,allergies but needed to go to the allergist for further testing of other possible reactions last week. Meaghan has been praying for Brooks' healing and right before his examination, he appeared to be feeling much better than usual. When the allergist tested Brooks this time, he was completely allergy free! Completely! Not one allergy showed up! What an answer to prayer! Thank you for showing YOUR healing power in our little nephew's life Oh, Lord! What an amazing testimony!
On the Gerdis side, Grandma Judy is getting her taste back! Guess the latest mix of chemo cocktail has one nice benefit. Otherwise she is very, very weak, tired, and achey. Please continue to lift her up in prayer as she faces the last chemo treatment this coming Friday. Thank goodness, the chemo portion will be done!
I am totally in awe of my mother as she has faced this cancer treatment head-on! She has only shown trust in the Lord, glorifying Him, each and every step. I know she would probably say that she hasn't, but we know differently, don't we.
I also want to thank all the friends and family that have rallied around my mother this year. It has been such a comfort to know that my mom is being taken care so wonderfully and with tender-loving care. It is so hard to be here in New Jersey during this time, and it was even harder to leave her after our visit during Spring Break. Really hard! I just wanted to stay and be with her so badly!
Well, it was a beautiful day and Gideon, Maia, and I did some beach clean-up volunteering this fine beautiful morning. It was great fun and hopefully I can post some of those pics in an upcoming post. Have a great rest of the weekend!

Here's More On Gavin

Here is the latest...

Still no bowel movement. Last night Dr. Peter came back up to the hospital (he was not on call) and spent some time with Faith and Adam. He explained to them that he still feels that Gavin is doing well. The intestinal issues are not uncommon. Dr. Peter and his wife have given Faith their cell phone numbers and have told her to call them at any time. I feel sure that Dr. Peter will be back up here before the day is over. Gavin still has fluid draining and had dry heaves last night. They have given him something for nausea so we are hoping that will pass soon. Gavin is asking for milk, water or juice. He can't have anything to drink right now. Continue to pray for the obvious and also for family members here with Faith and Adam. Thank you for your support of this precious little guy! Mitzi

Friday, April 24, 2009

Gavin Update

Please continue to pray! This was just posted concerning Gavin...

Friday, April 24, 2009

Another update
Faith just came to the waiting room and said that Gavin had thrown up again and it had blood in it. They have called Dr. Peter. He also has developed a fever. Still no bowel movement. The catheter relieved his bladder. Will update soon. Mitzi

Prayer for Gavin

Please be in prayer for another one our heart buddies, Gavin Parker.

He had surgery for more repair on his heart that has Hypoplastic Left Heart Syndrome.

His surgery was yesterday and he is in a lot of pain and discomfort. He is not urinating or passing a bowel movement. Please pray that he will do so very soon. If not they might need to do a urinary cath and some other type of procedure.
Thanks so much!

Tuesday, April 21, 2009

Orange Makes Us Remember to Pray for Stellan

We are praising God for you, Stellan.
Our Son, Gideon, has been singing songs of prayer for you today all on his own.
I'll have to see if I can record one of his precious songs.
Maia, your heart buddy and birthday buddy, wishes you well!

We are so glad your surgery is going to make your heart "BLOSSOM" with health and happiness!

May the Lord's Healing Power Fall Upon You in a Mighty Way!

I Samuel 25:6 "Say to him: 'Long life to you! Good health to you and your household! And good health to all that is yours!" (NIV)
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Friday, April 17, 2009

Cradle Cap Tips and Baby Acne Help

Okay, when my daughter, Maia, was 2 months old she developed an awful case of cradle cap which in turn caused her to have a really terrible case of baby acne as well. I tried many tips I found on the internet and I wanted to share what worked for me and what did not.

I tried the baby oil. Everyone recommended the baby oil. It got off a bit of the cradle cap, but Maia's cap was very thick and as soon as I had gotten it off it would literally grow back within 12 to 24 hours. It was crazy! I swear I could see the skin cells developing as I looked at her skull. It was so very frustrating.
I tried the over the counter cradle cap formula, i.e. the picture below. Now for those with mild cases of cradle cap this would probably work, but I would put this product on her head ritualistically every night and the next day. Voila! Cradle "crap" again. Pardon the word, but it was! I also felt bad for my daughter because her head was bright red and raw each night. Not a nice thing for a mommy to see. Especially since I was the one doing "it" to my precious little one!

I had heard that I should try Selsun Blue or Head and Shoulders. Hmmm. I was very cautious about this since it was so chemically based and I really didn't want to go that route. Well into month 3 1/2 I was desperate and asked the pediatrician about these products and my sweet pediatrician agreed that I should apply Selsun on her head nightly for two weeks and that should cure her. Hmmm. Okay here it goes.
Well, I tried it and while the cradle cap came off very easily with the Selsun she was still having it come back with a vengeance about every other day until the day of revelation came. Dum, Dum, Dum!!!! (I had to add the dramatic affect, it really was a very spectacular moment for a frustrated momma!) I combined the baby oil and the Selsun blue together! It has been a wonderful time since this discovery.
Here is what I did....
1. I like to work on my daughter on her changing table or the cushy ottoman in my family room.
I place a folded towel under her head so the ottoman doesn't get wet.
2. I get a warm bowl of water, wash cloth, the Selsun, baby oil, comb and soft baby brush.
3. I wet my daughters head with the warm wet wash cloth and then squirt a small dab of Selsun onto her scalp.
4. I massage the Selsun with a warm wet wash cloth till it gets nice and sudsy on the scalp.
5. Now here comes the "Voila" moment. I add baby oil all over the scalp with the Selsun suds still on the head.
6. Now I usually use my soft baby brush at this moment and scrub the head very well with it.
7. Then I take either a baby comb or a fine tooth comb and start at the cradle cap. Now I know my daughter doesn't look like she needs it, but she was just a little scaly and I thought she needed a treatment. When it was really bad, the dead skin crud would come off so easily and her scalp would be completely clear.
8. After I have done the picking of the cradle cap. I rinse her head with warm water and dry with a clean towel.
9. Then you have a clean and clear baby head. What a wonderful sight! This clear scalp would last much longer than the other treatments did. I could go about a week. And each treatment it would last a little longer. She is now 5 1/2 months old and has just a little dry skin on top that I treat occasionally. What a relief to see my sweet daughter without the ugly cradle cap!
Oh! I want to mention what I did for her baby acne. I saw this online and it really does work very well! I just would use some warm water, about two cups and then about two or three tablespoons of baking soda mixed in. Then I took a clean wash cloth and dipped it into the solution and lightly cleansed my daughters face and neck. Usually, the next morning, (if applied the night before), she was clear. Once the cradle cap was taken care of, I didn't need to worry about the baby acne.

Well, I hope this helps any parent out there that is struggling with this frustrating condition. I wish I had found this technique sooner. Hopefully you found this sooner than later!

Thursday, April 16, 2009

Visit to Kentucky

Does this look a bit busy?!?!
Well, if you would like to see each one in a slow-paced slide show
please click this LINK!
We had a wonderful time with friends and family and boy did it go by way to quickly!
We wish we had more time!
Four days was definitely NOT enough time.
When you come to pics of Maia that look really old, they ARE!
Those are pics of me.
We decided that Maia and Momma are twins 37 years apart. hee hee
Oh! And if you want to make copies of photos and just look at certain ones without the slideshow, then click this LINK.
Oh! And the last few photos are of Maia's new amber necklace, compliments of Aunt Meaghan!
Thanks, Auntie Meag!
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Monday, April 6, 2009

Getting Ready for Easter!!!

We are so excited about seeing family and friends in a few days! We hope Maia cooperates on our long drive to Kentucky on Thursday evening. If she has a hard time, we might have to turn right around. Too much prolonged crying just wears her out and depletes her oxygen sats. Just be in prayer that it is a calm, happy, sleepy drive there.

I have some wonderful friends that have given Maia some absolutely beautiful dresses that are just perfect for Easter. Since she can't wear them all in one day, she adorned the first one this past Sunday. Here are the results. It was so fun to have my actual real baby doll to dress up for a change! So much fun!
Please continue to lift up my mom in prayer. She is still struggling with her taste buds and downing anything of nutritional substance. She is losing weight quite considerably. She is also going to be put on a new cocktail of chemo this Friday since the last one was definitely not the right mix for her. Hopefully this one will give her a break from the awful symptoms she has been having. Lord, please surround her with your peace, calm, healing power!
Also, Stellan is going in and out of SVT and more so today IN SVT. IT appears that a new physician in taking on his case and will treat him remotely unless Stellan requires surgery and then he will be airlifted to this new location. Jennifer does not want to reveal the location yet, but will divulge this at a later time. They are asking people to pray for wisdoem in each decision they are having to make for Stellan and of course for his healing power to be upon their son's heart.
Baby V, Veiyah, whom I have mentioned in the past for prayer has been having some struggles as of late once again. She was very sick with the flu and had to be admitted into the hosptial. While there she they were concerned about her eyes turning inwards and they did an MRI since they were concerned that it was a brain thing. Thank you, Lord! It was not! They were concerned that in the past that there might have been oxygen deprivation, but it looks like the eyes are correcting themselves. Continue to pray for this dear baby and this sweet family, Ani and Jeremy and big sisters as well.
Both these families have funds set up to help them financially. My mom also just emailed me about a family with a little girl, Kari, who is being treated at CHOP, Maia's birth hospital. She has major heart complications but it appears the Lord is miraculously at work in this little girls life.
I have a whole slew of links to heart buddies on my sidebar. Whenever you want an update on one of the these sweet heart babies, just give it a click. Thank you so much for your prayers for our new found friends!
We cannot wait to see many of you in a few days in Kentucky. My mom is wanting to have a get-together on Saturday or Sunday so if you want to come by let us know and we will see what we can do!