Deene Souza Photography!

One of our friends took some beautiful pictures of Faith and our family!
Check them out at http://deenesouzaphotography.com/

What the kids are up to!

This is Faith on her 2 month birthday! So with my last child I'm really going to try to take a picture on her monthly birthday to see how she changes. This was my plan with all of them but it didn't happen! lol...She's hit the 12lb mark and is starting to coo and smile:)

How cute is this?! Grant is a great big brother!


Miss Hollywood! Elizabeth loves to play dress up and loves her flip flops....don't even try to put a different kind of shoe on her! She had to wear these shoes everyday to pick up Grant and Olivia from VBS! It took us about 5 extra minutes to get to and from
the parking lot but she was sooooo happy:)

This is the newest addition to our family...Tiki the kitty!

Olivia is in love with her new kitty and learning some responsibility.

It's her job to feed and clean up after the cat!

Here's Aaron, Grant & Sam! Grant told us he thought he needed a job on the dairy this summer. So his dad and grandpa came up with raising some calf's. Sam was his first one, he has since add Ethan and John! He's getting up with Aaron in the morning to go to the dairy and feeds his calf's and stays most of the day "working" at the dairy. (or maybe hanging out in Grandpa and Beppe's house..lol)

We are having a great summer so far just hanging out!

WOW, how time flys!

Wow, I can’t believe how much faster a month at home goes then a month in the hospital! Faith is doing fantastic! We had a check up at UCSF last week and they are so pleased with how she is doing! She gained two pounds since leaving the hospital, was in the 90th percentile for her height (surprise, surprise)! They also lowered some of her meds. She had a follow up echogram, it showed that her heart was back to normal and showed no signs of hypertension! Praise the Lord! Can I just say that again….PRAISE THE LORD!!! We stand in awe of what God has done in Faith’s little life already! We wanted to thank all of you for your many prayers on her behalf! I think if God had a cell phone he would be WAY over on his minutes from all the “calls” you made! But then again I’m sure most of you are in his “network”!

We don’t have to go back to UCSF till she is 6 months!! WOOHOO!! We have been asked a lot “well what now or is she back to normal?” There is always a chance that she can reherniate, never to the extent of what she had but with her size of defect there is a 50% chance the patch will tear away from the muscle. We also have to watch for signs of a bowell obstruction. Some other things the CDH clinic will keep on eye on…..lung function, development issues, and for some reason some CDH babies may experience some hearing loss. Faith passed her first hearing test with flying colors! So, yes she has over come some huge issues with the Lord’s help. But more prayer for her continued health is always welcome!

Once more thank you, thank you, thank you for all your prayers! God has heard our prayers! What a mighty God we serve! We give God all the glory for what He has done
And will continue to do!

We have to come to realize that life will always have storms that come and go but what really matters is what foundation your house is built on? If built on the beautiful but shifting sand the storms will surely take its toll. Build your house on the SOLID ROCK and after the storm your house may need a little refurbishing but you will still be standing in HIS amazing grace!

We made it HOME!

We got to take Faith home on Wednesday. She is doing great! Thanks so much for all of your prayers. PTL!

And the Million Dollar Question Is....

When do we get to go home? Faith is doing great. The nurses took out her nasal feeding tube on Saturday and she has been nursing ever since. The Dr's want to be sure she consistently gains weight while nursing before they send us home. Saturday night she gained 5 grams, tonight she gained another 10 grams (30 grams to an ounce), sounds pretty consistent to us, but I think the doctors want to see a gain of more than 10 grams. God has been good. Lots of prayers have been answered, and we have been blesses with some awesome nurses. They tell us she is on the fast track to go home and can't believe she only been here a month. ONLY a Month!! Do they know how long a month away from home is?!!

Welcome to Holland!

WELCOME TO HOLLAND

by Emily Pearl Kingsley

"I am often asked to describe an experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it,

to imagine how it would feel. It's like this:

When you're going to have a baby, it's like planning a fabulous vacation trip – to Italy. You buy a bunch of guidebooks and make your wonderful plans. The Coliseum, the Michelangelo "David", the gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland".
"Holland? you say. "What do you mean Holland? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
"But there has been a change in the flight plan.

They've landed in Holland, and there you must stay."

The important thing is that they haven't taken you to a horrible, filthy place, full of famine and disease. It's just a different place. So you must buy new guidebooks.

And you must learn a whole new language.

And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower paced than Italy, less flashy than Italy. But after you've been there a little while, you look around and you begin to notice that Holland has windmills. Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy, and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say, "Yes, that's where I was supposed to go. That's what I had planned."
The pain of that will never, ever go away,

because the loss of that dream is a very significant loss.
But if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things about Holland.

I wanted to share this wonderful poem with you..... My great friend Jamie Mouw shared this with me after Elizabeth was diagnosed with CF. When ever I'm having a down or hard day, I read this to remind me of the great joy I have found in "Holland"!

God has placed a few special families in our life's who have been to "Holland" and back again. To see how God places people in our life's way before the storm comes is sooo awesome! So thank you Lord for that wonderful gift! And thanks to our dear friends Phil and Judy and Lance and Jamie for your friendship, support and love!

Long over due update!

Sorry there hasn't been any updates lately! This past week I think it all caught up with me and the mommy adrenaline was withering away! To think of what to post just made me tired...but today I'm refreshed and ready to go!

Faith continued to be a star with her lung issues! She has impressed many, but I continue to remind the docs it's b/c soooooo many people were praying for her! Faith decided at two weeks old that she didn't want to be on oxygen any more and pulled off her own nasal cannula! And she did really well, this girl knows what she wants! God is good!

She contines to show progress everyday in her breathing rates, they are still a bit fast but way more under control now. The next step now becomes getting her to eat well. Sometimes CDH babies have a hard time with nippling but Faith takes the binki, bottle and nursing well! One more thing to thank the Lord for! Although she is nursing good she wasn't quite getting enough calories, so on Friday they decided to put the feeding tube back in to help her catch up. Today she is nursing and then following up with 30ml through the feeding tube. Hopefully in a couple days she will be nursing well enough to take out the feeding tube.

Sleeping Beauty

Bath Time!

Grant and Olivia got to help with Faith's bath, they each got one leg! We had to be fair!

Just a few cry's during bath time. Her cry kind of sounds like a little lamb:)

Faith lungs are doing GREAT! One of the head Dr's commented today that she is very impressed with Faith's latest chest x-ray that showed lots of expansion in her left lung! And we(the docs) don't see this happen often in CDH babies!!
I think we all need to give a BIG shout out to our Maker the GREAT Physician!
So now that her lungs are well on their way our next hurdle will be starting feeds and getting the digestion to work properly. Faith did start some tube feedings on Thursday, she seemed to be doing well until 12pm Friday morning. She was uncomfortable and they gave her a small dose of morphine. This helps the pain but slows the gut! She then got a little backed up and the doctors stopped feeds for 24 hours. She now is getting Tylenol for any pain and we started bottle feeds again this afternoon! Please pray with us that she will be able to digest her food well and that she will continue to be a good eater! A good eater leads to weight gain. All these things together get us that much closer to going home:)

A quick note on Elizabeth, she still is fighting off the cold but starting to sound better. It just takes her twice a long as you and I to get over a cold. So keep praying for her as well!

She's our overachiever!

Just got off the phone with the night nurse....and Faith made a few more steps in the right direction! 12:00 last night they moved her settings on the sipap to 21% oxy - that's room air!!!!
About 5am she was doing so well they moved her to a nasal cannula with high pressure! WOW..I'm so amazed at how God is working in her little body!!!

They also started a feed through a small tube and she is keeping that down and she pooped right away! So everything seems to be working right:) Our prayer now is that she will continue to digest her food and not get "backed up" and this is the time where fluid my build up in her lungs where all her digestive parts where. We don't want that to happen, because that could lead to a chest tube. So keep the praying up.....What a mighty God we serve!

OFF THE VENT!!!

PRAISE THE LORD, Faith is off the vent!!! She is now on Sipap which is oxygen support through her nose and doing GREAT!! Just a quick update to let you all know:) I'm going to try to give a more detailed updated later tonight!

Once again thank you so much for all the prayers! To God be the glory great things He has done!!!!!!

Holding Faith for the first time!

Holding Faith for the first time was soooooo wonderful! I think I held her for 2 hours, I didn't want to put her down! She stayed very relaxed and her oxygen levels were very good! Faith took a good nap in my arms. I knew I loved her very much but my heart was so overwhelmed with JOY! Yes there were a few tears..but tears of joy!

She has a little bit of jaundice, so here she is working on her tan with her daddy! I think this is the ONLY time he will allow her to lay topless! LOL

Aaron got to do the first parent diaper change! Yes, he changes diapers and doesn't complain!
I think he's a GREAT daddy!

We are cautiously optimistic, she is making little baby steps everyday but she has a lot more to make. The Dr's are pleased with her progress and say she really isn't following the book
of CDH babies...thanks to our Lord and all your prayers:)
We can't believe she is a week old...the shortest and longest week! WOW!

Thanks for all your prayers, we can sure feel them! Please also keep the rest of us in your prayers too.. Elizabeth is battling a cold, the kids are back at school and Aaron went home to try to get some work done so he could come back this weekend! So I miss them all:( But we are taking in "One day at a time!"

Thanks again for all your prayers, xoxo to all of you!

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Faith Opens Her Eyes

5 days old!

Here is a picture of what happens with a Congenital Diaphragmatic Hernia (CDH). The diaphragm doesn't form completely allowing the stomach move up and put pressure on the lungs. The corrective surgery involves moving the stomach back down and closing the hole.

Faith was able to come off the medication that kept her so still and she opened up her eyes for us this morning. Awesome to be able to finally see her open her eyes and move around. The smiley face on Faith's tummey is where she has an incision from surgery.

Grant was pretty disappointed when he first found out he was going to get another sister, but he was really excited to see Faith today.

She looks so cute we just want to pick her up and take her home with us. Faith is very stable, and the next step will be starting to ween her off of the ventilator. Everything is baby steps no major changes for awhile.

Out of Surgery!

We haven't been able to see Faith yet but we just got an update from the surgeon. He said the surgery went well and Faith remained stable throughout the surgery. We were hoping that they would be able to stretch Faith's diaphram to repair the hole, but they did have to use a synthetic patch. Little bummed about that, but were glad to hear that her left lung was more developed than they expected.

Thanks sooo much for everyone who prayed and sent us words of encouragement. It was very humbling to hear from all of you. Please pray for a speedy recovery.

She is in Surgery

Surgery started about 2pm. It should take 2-3 hours.
Prayers will already being answered before the surgery. The team were able to move Faith to the conventional vent! This is the one the surgeons prefer to have the babies on for surgery. Faith was VERY stable on this going into surgery.

Thanks for the prayers keep them up:)

Surgery at 12pm today...PRAY

We got the ok that surgery will be at 12pm today, so pray it up when you can today!

Faith had a good night!

We will post updates when we can!

Upcoming surgery and prayer

Family and Friends in Pacifica

It's 8:30 on Thursday night and for the most part it's been a good few days. There have been a few times where Faith takes a few steps forward and then a little bit later she takes a few steps back. Overall they still are pleased with where she is on all the different monitors.

She has been on a breathing machine since birth. The team started her on a conventional ventilator after birth but by early Tuesday morning they had moved her to a high frequency vent. Faith continued to do very well on this, but the goal would be to get her back on the conventional vent for surgery. Today the team of Dr's felt Faith was more then stable to move to the conventional vent and they would plan for surgery mid-day Friday. We were comfortable with this as well so by 4pm she was on the conventional vent and did very well for a couple hours but by 7pm her CO2 level was way to high again on this machine and they switched back to the high frequency vent! The surgery can still be done on this vent but the Dr's prefer the conventional vent...so the surgeon will reasses tomorrow morning but the Attending Dr still feels surgery will happen tomorrow, but it is all a wait and see game.

We have felt overwhelmingly blessed by all the people praying for our sweet baby Faith! Keep it up because we sure can feel it! Thank you so much!


Speaking of prayer....a group of people have put together an awesome way some of you may be able to lift Faith up in prayer tomorrow....

At 1pm tomorrow (Friday April 24) during her surgery
four different gathering places to pray for Faith!
Tulare ~ Tulare Community Church led by Pastor Steve Duyst
Visalia ~ CVC High School led by Vicki Dykstra
Tipton ~ The Nace home led by Jim Nace

Can't make it to those locations ~ stop and pray wherever you are!

Once again we want to PRAISE our Father for all that he has done in Faith's life already!

We are still praying for a miracle and complete healing and have FAITH that it can still happen!

Because you gotta have FAITH!

The first 24 hours

The Dr's tell us to expect some good days and bad days. Today was a good day! And we are praying for many more of those. Faith had a team of people working to keep her oxygen and carbon dioxide stable last night and into the morning, since then she has been doing very good. As well as she is doing the Dr's contuine to remind us, she still is very certical. If Faith keeps doing well the Dr's will operate on the hernia as early as this Thursday.

Faith also got to meet most of her family today! Although we can't hold her yet, everyone was able to see and talk to her! Grant, Olivia and Lizzy were so excited they were the first people to see Faith! They already love her so much and can't wait for her to come home. All three handle seeing Faith "hooked up" very well. And of course her grandparents, aunts and uncles got to meet her too!

Took a little break to check on Faith...It's 8:50pm and Faith's CO2 stat was at a normal level! They've been working all day to get that stat down and for it to be at normal right now is WONDERFUL!!!!! Thank you Lord :)

I'm sure a lot of you are looking for stats.....because they have to move so fast after birth to get her "hooked up" they didn't even geta chance to weigh her.. They have given some estimations .......

Weight: 8lbs something

length: 21 1/2 inches

head full of brown hair, long fingers and toes, reminds us of Elizabeth when she has on her pink bow, but she reminds of Grant when she doesn't have a bow!

Leaving comments

Some of you have been wondering how to leave comments without signing up for a blog account. Here's how to leave a comment.

1. Below each post is a link that says ____comments. Where the line is, this will be a number, like 0,1,2,3 . . . CLICK ON THAT. A popup window will come up with a fill in form.

2. Write your comment in the blank box.

3. Next choose an identity. You can sign in with your Google account and it will automatically fill in your information. You can choose Name/URL and a place to leave just your name is an option. And lastly, you can choose to remain anonymous and no further info about you is required. So choose one of the buttons NOW and then click PUBLISH YOUR COMMENT.

4. Now your comment is on the blog and we'll read it and will have it forever and ever. Faith will have it when she gets older to read about all the people pulling for her from the minute she was born.

Now, don't be shy! Leave us more comments. They help us get through the day! God is good!

Faith arrives

Faith Sienna was born at 10:07PM. Tina is doing good. Faith is doing better than the drs expected. She is on a breathing machine and has lots of monitors hooked up to track her progress. Keep up the prayers.

At the hospital

Well it's been a slow day. We got to the hospital at 8am Monday morning, started on patocin at 10:30, now it's 5:15 and Tina is still comfortable enough to facebook! Doctor just came in and said she will be back to brake Tina's water so things should progress quickly. We are at UCSF in a corner room on the 15th floor and we've had an awesome view of the bay and both the Golden Gate and the Bay bridge!

Happy Easter

Christ the Lord is risen! We thought today would be a great day to start our family blog…”One day at a time with the Highstreets!” As we start this journey the Lord has placed before us, we can’t help ourselves from thinking about the journey Christ took to the cross and stand in awe of what He did for us! By no means are we comparing our lives to Christ, but his was a journey that was not easy but he wanted to do the will of his Father. And this also has become our prayer, we don’t really understand it or want it to be the way that it is…but HE IS IN CONTROL and we will PRAISE him always! Our family has had its share of storms the past couple years, and there have been times when we say “SERIOUSLY GOD” is this what you have planned for us! But there have been a lot more times where we have laid it at the foot of the cross and said “God you are SERIOUSLY in control and we wouldn’t want it any other way”. Better to be in the storm with God than anywhere else without HIM.

Some of you may be reading this and wondering what is going on with them? Well here is a quick overview to get you caught up to speed. In August of 2007 our 6 month old daughter Elizabeth (aka Lizzy) was diagnosed with Cystic Fibrosis. CF is an inherited genetic life shorting disease with no present day cure. Elizabeth follows a daily routine of meds and treatments, but is also a thriving, vibrant and very loveable two year old. She is a wonderful blessing to us as well as our other children, Grant a fun loving, creative 8 year old and Olivia our always smiling, enjoying life six year old daughter.

Once we felt like we were only in a light rain after Elizabeth’s diagnosis, our family did not feel complete and we decided to have another baby:) We were very much aware that our baby could be born with cystic fibrosis but also feeling at peace that God was in control and our love for this new baby would not change! At our 20 week ultra sound we found out we were having a GIRL and our doctor found that our baby had a condition called “Congenital Diaphragmatic Hernia” (or CDH). This came as quit a blow to us, as we were prepared for the possibility of CF but not something completely different!

CDH is not related to CF or any genetic disorder. It is a birth defect that sometimes is related to a chromosome disorder but not always. God answered our prayers and the testing for any chromosome disorders and Cystic Fibrosis came back negative! PRAISE THE LORD! So what is CDH? The baby’s diaphragm did not grow together correctly leaving a hole on left side allowing room for parts of intestines and liver to move up into the lung cavity. This then puts pressure on the heart moving it to the middle and making less and less room for the lungs to develop properly. After many checkups and test, the doctors have called her CDH middle of the road and call her condition very serious. They have told us to prepare for the worst and hope for the best. Just what you want to hear!

After much prayer we have decided to name her FAITH! We think her name says it all!

So what is the game plan?

We have decided to come to UCSF Hospital for care. They are one of the top hospitals to deal with CDH in the US. They will induce Tina on April 20th with a whole “Team” waiting in the wings to care for Faith. Not knowing how developed her lungs will be, they plan to intubate her right away. Once they feel they have her stable they will perform a surgery on her to correct the CDH. This usually happens sometime during the first week of life. Then they will work on developing the lungs. The doctors have told us best case, would mean one month in the hospital but could be up to three months. There is a wide range of other complications that may happen but we are still praying for the Lord to perform a miracle! We believe that this can happen and ask that you pray along with us!

Please pray, pray and pray some more! Pray for healing, for her lungs to be strong and developed, for the doctors to be on top of their game, and for us as a family as we journey down this road. We don’t understand why this has to happen; we do pray that if this is about being a witness to someone somewhere that the Holy Spirit will give us the right words to say.

So we are taking it “ONE DAY AT A TIME” and trying to live each day for HIM no matter what the storm may be. We plan to update the blog often, so check back with us when you can! We thank everyone for your many kind acts, thought and prayers! How wonderful to be part of the family of God! We couldn’t get through all this without you!

WE SERVE A RISEN SAVIOR AND WE WILL PRAISE HIM IN THIS STORM!