Friday, October 31, 2008

Eyes Wide Open

We had a wonderful day with our daughter! She was interactive, peaceful, and just plain fun to be around. What a peaceful day! Thank you Lord!
Here are some pics of our day and a silent video at the end of her! :)
In the bliss of restful sleep

Yes Houston I am content
What DAD!!

Dad and Maia's first talk about boys

So are all guys like that???

Exhausted from our talk it time for sleep again. The blue bar is to stabalize her
arm from the IV placement for her blood transfusion yesterday.

Ouch those needles hurt!!!

Such perfect little hands

Always check the levels of my blood oxyegen if I stay at 85 or above I get to
go home. More on that later.

I am Fearfully and Wonderfully Made

Getting Ready for my first IV Meal

Our Little Pumpkin

Sorry Guys...the video didn't upload and we will try again tomorrow!
First an foremost we want to thank you all for your continued prayer and support. This
time would be immpossible without the strength of God and the Body of Christ.
Tomorrow is another big day, they will try to wean Maia off her prostiglandin. This is the
medecation that keeps the ductus in her heart open and allows the blood to mix in both sides
if her heart and maintian high oxyegen levels. This will happen at 7am tomorrow. If her blood oxygen level stay at 85% or above for a week or more it would show the valvoplasty
was a success ad no other surgery will be needed for at least 6 months or at all. If the levels fall below 85% they will have to put her back on the medicine and try again a diffrent day. If there is continual failure the they would have to do the shunt surgery. We confidently wait on the Lord no matter the outcome for our child we desire the first but if that is not the will of God we will glorify him none the less. Again thank you for your prayers and support we will update you with more tommorrow.
Ken, Trina, Gideon and Lady Bug Maia

Just a Little Update

We are waiting on the doctor rounds to come to a close. When the doctors do their rounds all the parents have to leave so they don't hear anything private / confidential according to HIPPA laws. So I thought I give you a little update.

Maia looks so much better this morning! She is a bit fussy (which we don't mind in the least!), sucking her binky incessantly, and opening her eyes to look at mommy and daddy. Her stats are much, much better! Thank you for the prayers of the faithful! God is listening.

She will start a mix of electrolytes and vitamin liquids in her IV line today. Maybe tomorrow she will start eating from a bottle. We shall see. Tomorrow is when the prostoglandin will be stopped. We will just need to wait and see how her right side of the heart will react and those wonderful oxygen levels.

Keep you posted soon (later today). She is in a really cute crotcheted hat that a nursing home resident created for the little ones here at CHOP. It almost matches her blanket identically! Gotta show you that!

Love You Guys! Ken, Trina, Gideon, and Maia

Thursday, October 30, 2008

At the End of a Long Day!

Pics first and Then a More Detailed Explanation
Maia after her cath procedure. The red and white bag on her left leg is to warm it up. They were having a hard time getting a strong pulse in that leg after the procedure. They hoped warming it up more would get that blood flowing. They have her spread out, instead of swaddled, due to the right leg needing to be stretched out for a few hours after the cath procedure.
Here is a closer view of our sweet daughter.

They started piling warm blankets on her because her temps were to low after the cath. That bottle at the top right corner of her bed is actually a big vile of blood that is being pumped into her as well. They hoped this would get that blood pressure back up.

Stephanie and Adrian come to say hello to little Maia! We were so very glad to see them! It was so nice to have familiar faces here!

We love our friends!

Sorry that this is such a late post. Maia did have her cath procedure with valvoplasty. The doctor told us that it was successful at dilating her pulmonary valve. Now the right ventricle needs to respond. The right ventricle is narrow and rigid right now and so it is reacting a bit too strong to the new flow on that side of the heart, but the doctor believes that it will compensate throughout the days, weeks, months, and years to follow.

What we need to look at now is her oxygen levels. She will be taken off the prostoglandin probably in a day or two. The ductus between the two sides of the heart will begin to close and that oxygenated rich blood from the left side will no longer intermingle with that of the right side. If her oxygen levels maintain at 85 or higher she might get to come home with us without any other procedure! This could happen in a week or maybe two or three. If her oxygen levels are too low, they might put her back on prostoglandin and do a weaning procedure to see if they can close the ductus more slowly and get the oxygen levels to an acceptable level. If it appears impossible,... then it will be off to the BT shunt option.

I do want you to know that she did lose some blood during the cath procedure today and had to have two different transfusions. When we arrived back at at the CICU, she was pretty low in her temps and blood pressure as well as low pulse signs in her right leg where they tried to start the cath, but ended up on the left leg instead. She appears to have a good rising temperature, but her blood pressure is still a bit too low for our liking (nurses seem okay with it, but this is just Kenny and me). Please be praying for stats to return to a more normal level.

We had a great surprise tonight! Stephanie Cruz, my vice-principal at Calvary, and her son, Adrian, came for a visit (all the way from Lakewood on a school night!) We were so very blessed to have them come and visit. Maia was pretty sedated still but they were able to caress her head and hands and feet and say up a prayer for her. Adrian commented on how nice and caring the CHOP was and no wonder they call Philly the City of Brotherly Love! I thought it was just a perfect comment! We think so too, Adrian!

Gideon is doing well this week with family friends, the Dolans. Nicholas is Gideon's best friend and it is quite a treat to be staying with this family. He usually has no time to talk with us when we call. He is so funny! This was my conversation with Gideon last night...

Gideon...Hi Mommy
Trina...Hi Gideon!
Gideon...Can I talk to Maia?
Trina....She is another room and cannot talk right now?
Gideon....OK, then are you in pain mommy?
Trina...No, I am just fine.
Gideon....Good , okay, bye then, love you!
Trina...Bye ( but he is already gone to play some more) :)

With Halloween upon us tomorrow, it is a day of such spiritual warfare. Please be lifting Maia up to the Lord and pray that He will put a hedge of protection around her even more so. Kenny really is sensing that this could be a hard day for our little one! Let us make it the Lord's day!

Again we love you all and thank you for your prayers! The Lord is Mighty to Save!

We have been focusing our a lot on reading the Psalms to Maia and singing worship songs to her at her beside. A dear friend, Kathy Angiletti, gave us this scripture that she felf the Lord impressing on her heart the other day...the whole chapter of Psalms 30. I will type this out tomorrow for the blog, but it is the passage that contains the following...
"Some trust in chariots, but I trust in the name of the Lord our God!"

LadyBug Maia and Her 2nd Day of Life

Well, it is about 2 p.m. as I type out this post and Maia has been wheeled over to the cath lab to begin getting ready for her valvoplasty procedure as I write away. We have called a few of our family and friends to be specifically praying for her at this time. We are very much at peace and have had a time of prayer and worship with Maia this morning before she went in. If you see this posting before 4 or so, she is probably still in the procedure and we would love your intercession for her at this time.

We wanted to post some pictures from our morning with our daughter. We were able to hold her for the first time today and it was such a wonderful experience to be able to do so. It makes it so much more concrete that the Lord has given Maia to us and she is ours to take care of on this earth as a privilege from our amazing Lord!

Here are the pictures...

This is Maia with her Prayer Blanket that the Mt. Hermon United Methodist Church made especially for Maia and then prayed over before sending it to us! What a special treasure! Thank you so much! As you can see she is very cozy and comfortable with it in her bed.

The nurses made this little sign for Maia when they heard that I was wanting to do up her nursery in ladybugs! I love it! The bear in the background is from Yvonne, a good family friend!

Snoozing Away!

The nurse preparing Maia to be put in my arms. She was not a a happy camper!

A very happy momma finally gets to hold her little one!

All grins! We just need Gideon to be here to make it complete now. We can't wait until Sunday!

Making sure her prostoglandin line isn't pinched or tangled.

Special Ladybug from Grandma Judy!

Kenny can't believe how tiny his little girl is, but Gideon was just as tiny. How time flies!

Maia is content in Daddy's Arms!

Wednesday, October 29, 2008

Maia's Birthday!

We are so excited our little girl is here! She is perfect in every way and we would like to share her and our special day with you so you can see what the Lord has done!

Getting Ready for the Delivery Room at 6 a.m. in the morning.

Trina is feeling nothing! Absolutely Nothing!!!
It's bliss!

Maia is coming out in all her glory

Getting checked out by the doc while screaming her amazing strong lungs out!!!! We loved that!

Momma getting to say hello to Maia for the first time!

Resting in the CICU

Our Gideon look-alike! She could have been his twin four years later! Too cute! IF we do say so ourselves! :)

Tiny toes! Too precious!

Proud Momma and Very Content!

Proud Papa with his little girl!

Our little Ladybug, Maia Elisabeth!

Thank you to all of those who have prayed for our little Maia these past few months! God has done great things in her and in us this special day. She was born at 9:32 a.m. She weighed 6 lbs. 5 oz. and was 18.5 inches long. She came screaming loudly into this world, which was just what we were praying for. The docs confirmed ithe HRHS, but she will be scheduled for the balloon catheterization procedure (valvoplasty) tomorrow. We are very excited about this. This might be the only procedure she needs. We will keep you updated as we know more. But right now she is on prostoglandin to keep the ductus open between the two sides of her heart. Her oxygen levels have been great and she is as pink, as pink can be since her birth this morning. She will be taken off the prostoglandin after the procedure tomorrow and then it is wait and see. If, after the ductus closes, her oxygen levels remain 85 or above, she will get to come home with us in about 2 to 3 weeks! We are so amazed at the Lord's provision for our daugther. We do not deserve such blessings, but God is gracious! If this does not happen however, she will need to go through the 2nd procedure of the BT shunt, but again God is so gracious! WE will explain more about this tomorrow in another blog.

Trina is doing well. She is up and at em'! She was able to get around in a wheelchair to see Maia about 3 p.m. this afternoon and is already starting to eat solids for dinner. We will both go up and see Maia again after dinner. Trina is nice and dosed up with oxycotin and is feeling groovy!

We love you all and thank again for your support, prayers, and love that you have extended over and over to us through this process! Praise the Lord for the great things He has done! Amen!

Sunday, October 12, 2008

Another Philly Day!

Well, Kenny and I headed up to CHOP at 9 a.m. on Friday. We had a very full day ahead of us. I had my OBGYN appointment first. I had an anatomy ultrasound first and we found out that Maia is approximately more than 5 and 1/2 lbs at this point. That was very encouraging news.

Then we decided to do a amniocentesis to rule out any other anomolies that might have caused Maia's heart condition. We will get those results a few days before she is born. This will give the doctors more knowledge of how they can be ready medically for Maia after the C-section. At this point I had been laying on my back (sciatic nerve) for about an hour, but it hadn 't been giving me to many problems...yet. Oh I have to share I am laying still for the amnio procedure a friend of the family called and my cell phone went off with Gideon singing "Jesus Loves Me". As Kenny goes to get the phone, Dr. Bebbington, the OB doing the procedure, announces "I won't even ask." That made me giggle which of course makes my baby belly shake. Not good when you have a big old needle going into your uterus near your baby! Then Kenny jokingly says " You can tell your friend, they called right in the middle of your amnio!" Of course this makes me want to giggle more...but I controlled myself and told him I can't laugh. No more cute comments during this procedure! Uggh! What are the odds?

After the amnio, I met with a midwife who monitored Maia's heartrate and my uterus to make sure that there weren't any contractions. The amnio only caused less than 1/2 percent of women to go into premature labor, but they wanted to monitor it just in case. I was fine and so was Maia. Yay!

We had a few minutes before I had to meet with the Fetal Heart portion of my day, so Kenny and I toured the SDU (Special Delivery Unit) where I will be staying the first few days of Maia's life. It is such an impressive area. We will be well taken care during our stay.

When we got back from our small tour it was time for the echocardiogram. More time on my back. The technician we had last time was there again. She was so encouraging, sensitive, and talkative last time, but this day was different. She was all business. It was very hard to read what was going on. I was trying to stay as still as possible for her, but that sciatic nerve started to really revolt on me. The last twenty to thirty minutes of the procedure I was silently crying, and I never cry about pain! Last time she gave me breaks to help with the nerve pain, but this time...she didn't seem to care and I wasn't about ready to say anything if she was getting what she needed for the doctors. Kenny told me later that if it had lasted one more second he was going to tell the tech that the procedure was over. I love my husband! My knight!

We then waited in a consultation room. We talked with Dr. Natarajan and the head nurse as before. She said that not much had changed. Things were still small, but the tricuspid valve appeared to be more open!

Remember the prayer we asked everyone to be praying for!?!? Yes, The Lord Answered Prayer with a big fat, YES! Dr. Natarajan says there is still hope for the catheter procedure! That was such a huge relief to hear! Continue your prayers and intercession our sisters and brothers! God is at work in Maia!

Oh, I forgot to mention earlier that our OB, Dr. Bebbington, and we decided that October 29th will be Maia's birthday. Only three more Wednesdays to go! Wow! It is so hard to believe that the day is almost here.

After our talk with Dr. Natarajan we met with the Social Worker, Lucia, and she gave us some great information about Ronald McDonald House and Social Security Disability Insurance for Maia. We also met with Rachelle, the lactation consultant. I am glad we did this. I really hadn't thought about how my puny little Avent hand breastpump would be a joke when trying to pump milk for Maia 24/7. She gave me some great insight of what we need to do.

Then we met with Jill again and toured the CICU (Cardiac Intensive Care Unit) at the Children's Hospital. It was good to see where Maia and our family would be spending so much time in a few short weeks. There were so many families there. It is amazing facility. We didn't take any pictures. I felt it would be an invasion of privacy at this point. Once we are there with our little girl, it will be different.

After the tour we were done for the day. We were done a bit before 5 that evening. It was hard to believe that we were there that long with really no down time. We were thoroughly and completely exhausted. With the happy news of Maia's heart you think we would be in a joyful spirit, but we felt fully drained instead. It had definitely been a long day and a long week.

The next two Friday's we will be going to CHOP in the afternoon for OB appointments, then that final Monday I will go in for a pre-op appt. and then that following Wednesday will be the Big Day! So little time left! I only have about 8 more teaching days left at Calvary and I want to make sure that I leave well. I pray that I have good organization and efficiency these next couple of weeks, while being able to maintain rest and peace. A fine balancing act!

We learned that my mom, Judy, found out through her lumpectomy procedure on Thursday that there is spreading to the nodes. She is at home now and is awaiting news from the doctor on this Monday or Tuesday about what this will mean as far as treatment goes. She is doing okay, but it is all settling in that this is going to be a new lifestyle for her. Thank you for your ongoing prayers!

We also learned that Ken's mom, Paula, has severely depleted kidney function. Her doctor just gave her a call this past week about it and he is concerned. He is not sure if it is due to her diabetes or other meds that she has been on so many years. The word "dialysis" was mentioned. Please lift her up in prayer at this time.

We are definitely at a high pressure point right now. We need your prayers more than ever that God's peace will prevail in our hearts each and every day. We need his strength. Thank you, Lord for all that you have given us! We are so grateful.

Saturday, October 4, 2008

Crayola Factory in Easton, PA

We decided that we wanted to make sure that we had one more fun, special day with Gideon before the birth of Maia. We know that he might not get a lot of attention of from us, in the way he is used to at least, in a few more weeks. We left the house at 9:30 a.m. this morning and drove to Easton, PA. It is such a cute, eclectic, and historic looking town right on the Delaware River Gap that is the border river of New Jersey and Pennsylvania. Our purpose in going to this town was to visit the Crayola Factory. We were not disappointed! We had 3 1/2 hours of wonderful fun with our son! boot, the town was having a Garlic Fest right in the square where the factory was located. It was a wonderful time had by all and wish we could live in such a cute little town. We will definitely put it on the list to visit again.

We found a Big Checker Board on the Main Floor and we played this first before going on to the rest of the factory.

Gideon gets Kinged!

Daddy wins! Oh well!

Walk Like an Egyptian!

I am soooo scary!!! Right?

Mommy and Gideon Making a Placemat

Over, Under, Over, Under! I am getting the hang of this!!!

Daddy giving Gideon some suggestion!

Stamping a Fall Card for someone Special!

The Puppet Wall!

Gideon's Own Creation! His name is Bert.

Hello, My Name is Bert! How are you?

I like being this spooky sea creature the most!

Dripping Hot Crayon Over My Paper Moon. Of course Green is my Favorite Color!

Final Touches!

Our Family's Clay Creations

I think there is some kind of reptile on my head!

My Little Lady. She got totally smushed on the way home. Very marshmallowing type of clay!

Daddy's Cheery Creations!

They had a simple machine exhibition on the third floor. Gideon is testing out the different types of pulleys and realizes which ones are the easiest.

Easton's Beautiful Town Square at Fall

Gideon is craving his favorite fruit in exponential amounts!
Mmmm! Beautiful Fresh Apples!

Gorgeous Produce!

Nicely Decorated Pumpkins and Gourds

Gideon is Gettin' Down In Front of
a Fun Screen!

This video shows Daddy and Gideon making
a "huh-mewn-gus" sandwich (Gideon's word!)