What A Nice Day!

Uncle Joel and Niece Maia

Uncle Joel giving his Niece some Lovin'



I can't say how much Joel blessed Gideon and me with his wonderful attention with Gideon the week he was with us! We love you, Uncle Joel!

Grandma Judy and Maia together at last!

Making sure she is all bundled up!

Papa Tom and His Granddaughter! She really likes her Papa's voice!

Goingfor a stroll down the CCU aisles!

Are you sure you want your crazy son pushing me, mom?!?!

Chillin' at Home!

Ah! I could get used to this!

Well, we have been officially home now for 72 hours. This is the first day, however, that I truly felt like I was "home". Today we didn't have any family visiting nor did we have to drive back down to CHOP for any follow-up appointments. I didn't have to worry about pumping my milk for Maia in a private place. It was the first day just to "BE". It was very nice.

Maia's stats have been in the mid 70's to mid 80's according to the pulse-ox machine we were sent home with. We only check it twice a day. We were told by her physician, Dr. Natarajan, that she would only send home the machine if we promised not to check her stats 24-7, but only 2 to 3 times a day. We really have no problem with this request. We are very tired of the wires, beeps, and buzzes of her long hospital stay. Unless we see that she is getting more pale, cold, or blue, or under distress we feel pretty calm.

Maia did have her first local cardiology appointment with Dr. Rivera this past Thursday. Mom and Dad were still in town and helped take me there since I am not released to drive yet. The appointment went well, but we were thrown for a bit of a loop. Dr. Rivera noted that the bicuspid valve and aortic valve have some stenosis and that the aortic valve has two flaps fused together. This is all new news to us and these are parts of the heart that are on the LEFT side not her already compromised RIGHT side. Dr. Rivera felt it was very minor not anything to worry about for now. We were able to talk to Dr. Natarajan the next day at my post-op appointment and she also felt it was nothing to worry about and it should typically correct itself. Dr. N. had seen these anomolies on the echo before and she apologized for not discussing this with us at the time, but she felt it again that it was something that typically right heart babies grow out of and it is not a BIG concern. Well, I guess we will have to be all right with this new information then. Hmmm.

Dr. Rivera says that we need to be very watchful for the next six months. She will be going for weekly visits with the Dr. R. until her ductus closes and she will be getting monthly RSV vaccines. These next few months will show us if Maia needs further procedures. If she is unable to maintain her oxygen levels OR trend them higher has she develops she will most likely need to do the fontan procedure where the surgeons start rerouting everything over to the left side so it can do the work for her heart. I guess what I am trying to communicate is that just because Maia is home with us does not mean that she is out of the "woods" persay. Please continue to lift Maia up in prayer.

Well, I mentioned that my family was no longer visiting. Now just because it was nice to "BE" today, does not mean that it wasn't difficult to say good-bye yesterday. There were quite a few tears shed. It is hard to let go of my mother, knowing all that she is going to be enduring soon with chemo. Also, it was just so very nice to be with my parents and see them with their grandkids. It was a wonderful time had by all.

By the way, if you are wondering of a charitable organization to donate to this holiday season, please consider the Ronald McDonald House. Our time there was truly remarkable. The volunteers that help hurting families and their sick children are absolutely wonderful. My entire family was utterly blessed by this organization through the housing, the meals, the shuttles to the hospital. They are amazing!

Now, my parents did leave yesterday. About 8:30 p.m. last night we get a call from my mom. They had just been side-swiped by a semi tractor trailer truck! Fortunately they were driving their Lincoln Town Car! My father was able to keep the car under control and we have determined he must have had quite a few angels helping him out! Three hundred more meters and they would have been hit while on a bridge and there would have been no way to move over like they did. The truck went on without even stopping. When the police arrived they saw that the back driver's side door was very dented in. Thank the Lord that both my parents were not injured in the least. I called them this morning and they didn't even have any sore muscles! Do you think that our family might be under attack? Hmmm!

We are absolutely amazed that we are now home with our daughter. God is so good! We never would have dreamed a few months ago that we would be discharged from the hospital so quickly. Thank you for all who have been praying and continue to pray...he is listening and responding to your faithful prayers! Praise be to God!

We're Comin' Home, Lakewood!

She is going to be officially discharged today! We are so excited! We will drive back to Lakewood tonight and then check in with Maia's pediatric cardiologist in Wall, NJ. Yay! We will update further tomorrow. I need to get back to Maia so we can vamoose out of this place!

Did I Say RollerCoaster?

Wow! I thought last week was a roller-coaster, but this week has proved to be a loopy-dee-loop of one! On Friday, we were prepared for Maia to have a BT shunt procedure on Monday, but when we discussed the plan with Dr. Natarajan (her primary cardiologist here at CHOP) yesterday, she now thinks that Maia can be sent home as early as Wednesday. Whew! God is definitely blowing our minds. It is weird to think that we need prayer for trusting Him anew, but I must say that it has been a comfort to have the medical attention for our daughter the past couple of weeks. If she goes home, she will be an hour and a half a way from CHOP, but I keep reminding myself that we have be asking God daily to give the doctors wisdom to make the best decisions for our daughter and we need to believe that He is answering our prayers wholeheartedly. But is hard!

She is going to have a transfusion today to boost her oxygen levels and other stats. Babies normally loose hemoglobin and iron as they try to build their own storehouse away from their mommy's placenta. She is at a normal level for a regular baby, but Maia of course is a special girl, a heart girl, and she needs to be above a 14. Of course, she is at 13.9. LOL! The transfusion should take place soon, sometime in the next hour or so. They will watch her and if the hemoglobin and stats rise we could see her go home to Lakewood by Wednesday. Again it is wait and see.

After she is sent home (we hope)...she will see her pediatric cardiologist in Wall,NJ (Dr. Lloyda Rivera) every week to monitor her status. Dr. Rivera will determine if she might need to go back to CHOP for further procedures in the future, but of course we are praying that the Lord has healed her heart through the catheterization procedure from last week. Time will tell.
The docs believe that she will not have any emergencies while at home, but will just show indications via her visits with Dr. Rivera if she needs more intervention.

It has been wonderful to have my parents here since Saturday. I will hate to see them leave on Thursday or Friday. They have been such a comfort and support for our family during this time. Mom appears to be doing well this visit. Fortunately she can just sit back and relax and the hospital and not put to much strain on her body. Please be in prayer for her healing. The incision line from the mastectomy is not mending and healing well. This is the top priority request I have for my mother.

I promise to get some pics up on the website sometime this week of proud Uncle Joel and of the delighted Grandparents! Maia has taken to her extended family big time and loves to be held by all!

We love you all and continue interceding the Lord continues to be faithful as always!
The Sutherland Clan!

The Plan (For Now)

Hello All!

We talked to one of the doctors today to figure out what their plan and objectives are for Maia. Right now we are still in a wait and see mode with her ductus. It is still 2 mm wide. They think it should close in a couple of days. At that point they will watch her blood oxygen levels and see if they are sporatic and fluctuating or if they are more consistent at a certain level. We definitely want the more consistent levels. If the ductus does not close over the weekend, on Monday the doctors will discuss surgically closing the ductus. So in other words, be in prayer once again, our awesome prayer warriors. The ductus needs to close on its own. I really don't want to see Maia go through surgery. I know that the Lord will see us through if it does happen, but Lord you can "let this cup pass by me" if you see fit. I really don't mind.

Joel, my brother, has been here for about two days now and he has been such an awesome blessing to our family. Gideon has had the best time with his Uncle which has relieved me of some of that responsbility and I can focus on Maia and also my healing and rest. I am so happy that it worked out that he could come up to Philly. We will definitely miss his presence when he returns to Louisville. Hopefully we will be able to see him again at Christmas time.

My Dad and Mom are coming for a visit in a few days!!!! Mom appears to be feeling well enough to travel. They are leaving on Friday and staying at a friend's cabin at the halfway mark of the journey and then they will finish the last leg on Friday. I cannot wait to see my Mother! I am not sure how I will react when I see her. I have longed to be with her so badly this past month! I will give her a great big hug...as best I can at least! They will be staying for almost a week. Hopefully Miss Maia will be discharged during this time and we can enjoy each other's company at our place back in Lakewood. Keep praying!

Thank you for the prayers for my recovery. I have been feeling great and I haven't taken any pain medication in about 24 hours and I doing fine. Yay!

Kenny is back in Lakewood for work the past two days. Joel,Gideon, and I will travel to Lakewood for the weekend tomorrow, meet up with Kenny and then Kenny will come back for the weekend watch with Maia. Hopefully this routine won't have to last too long.

Gideon has been doing well, although he is totally off schedule and therefore his behavior and emotions are being affected. We are trying to get him back on his naps. Hopefully in a day or so he'll be more balanced. :)

We love you all! Thank you so much for your continued prayers. We are feeling them strongly through our peace and joy through this time and seeing how are daughter keeps responding physically day by day! We praise you, Lord! Glory to the Highest!

Rollercoaster of a Day!

Hello, Everyone!

We are so sorry that we have not posted in a few days! It has been crazy and our laptop is giving us fits. I think Kenny posted something to that affect a day or so ago.

We have been officially downgraded to the CCU from the CICU as of Sunday. Maia has her own room now. She appears to be doing well with her stats and her oxygen levels remain in the mid 80's to low 90's for the most part.

The staff announced to us this morning Maia was going to be discharged. They gave hint of this to us last night, but we weren't expecting it because an echocardiogram had not been done since Saturday and at that point her ductus was still open. We were very concerned that if it closed after we were discharged that we would not be able to make it back to CHOP. Well, when we found out this morning that we she was going home we were a mixed bag of emotions of happiness and concern. Kenny had to run to the closest Target and buy a carseat and some other items that Maia might need because we were so unprepared for this occurence. Yikes. We also had to take a CPR class today before she could be released. After we did all those things, she did have her "echo" and guess what....the ductus was very wide open and they decided that it wouldn't be best for Maia to go home. It was again a mixed bag of emotions....frustration but also affirmation of what we were feeling since last night. God is definitely watching out for our little ladybug but we don't want our human feelings to get in the way of His glory. I think we have been handling the rollercoaster okay, but we definitely want His spirit to shine in our lives to the staff and others while we are here.

So we are here most likely for at least two more days. They will likely do another "echo" on Thursday and see the status of the ductus again. My brother, Joel, is now here ! We are excited about this. As I am typing away, Joel, Gideon, and Kenny are driving back to Lakewood to drop Kenny off and then Joel and Gideon will return to the Ronald McDonald House later on tonight. Whew! That is one big day for Joel! I can't wait to see my brother! It is going to be such a special time with him as he is here for us and for Maia!

That is all for now. I could definitely write more...but I want to get back to our darling daughter before I have to leave for the night.

Here are a lot of pics that I have been taking since Saturday's updated pics. They are reverse chronological order this time. I am trying to do this blog as quickly as possible tonight....so no fancy shamcy editting like I normally do. Hope you enjoy! We love you all and can't wait to share Maia with you in person, instead of just digitally! God Bless!

Last Hold fromDaddy Before Going Back to Work for the Week.

View from Maia's Window.

Maia's Big Girl Crib in the CCU.

Gideon Hamming It Up for the Camera Once More





This next Section I entitle Doting Big Brother!

Holding His Finger!

Such a cute little nose!

She is just so beautiful, Mom! (He has been saying this over and over)

I just gotta kiss her one more time!

God is just so amazing! I love her!



Ronald McDonald House shots from this morning.

Cafeteria with playroom at the end.

All the places that people have come from to get medical services for the children in Philly while staying at the House.

Eating a Yummy Cinnamon Bread and OJ for Breakfast this morning.

Mommy changing Maia for the first time in the CICU.

Gideon meeting Maia for the first time on Sunday night.

Gideon's present to Maia, a monkey named Neeshock. Gideon's made-up name of course.

First Kiss!

Thank you all again for your prayers for Maia and for my Mother, Judy!
God is Good All the Time!

A New Day

We spent the morning with Miss Maia and when the doctors did their rounds they let us stay to listen to their discussion about her status. It was very encouraging. The head doctor listened to Maia's heart with his stethoscope and he felt like ductus is still open but fairly small. He thought that because of this she should not have to much more of an adverse reaction with her oxygen levels!!!! This is so very exciting! Now of course he also said that he was doing this "old school" with his handy dandy stethoscope and that what he "thought" needed to be confirmed with the echocardiogram that is being done later today. It is still wait and see but what I nice "expert guess" he gave us!



God continues to amaze and humble us everyday!


Yay! It uploaded! Here you go! Maia in action as much as she can be at this point! LOL

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

THANK YOU LORD!!!!!!

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

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) :)

Priceless!

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!"
Amen!

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!