Friday, November 28, 2008

It's a Beautiful Life!

I can "BEAR"LY stand how cute you are!

Just say "AWWWW". You know you want to!

Out Cold!

Momma is definitely camera happy! But who cares?

One more for good measure.

Getting to meet the Sutherland Family for the first time.

You are just too precious. I think I am going to have to check Aunt Becky's luggage for a baby before they leave on Saturday.

Don't you love the afghan that Paula Grandma made me!
I am picture perfect with it!
(Probably mommy's favorite photo of Maia to date!)

So this is a Papa Ken!?! Interesting!

Larissa and Maia

I'm glad Uncle Chris can get some relaxation around here...I think mommy drank to much Dr. Pepper today.

Thanks for the swig of milky goodness Cousin Brenna!

Larissa and Papa at the Thanksgiving table...about ready to partake.

Almost ready...we promise.

Paula Grandma and Maia having some bonding time.
Our familoy had beef tenderloin as the main meat for Thanksgiving dinner, but Gideon really wanted a turkey. So he got his own little (cornish hen) little turkey. He was very happy!

Eating Up.

Helping Paula Grandma with the Chrstmas tree!

Putting on the top! Gideon is satisfied now.

Mommy was taking on the pictures so she took one of herself and Maia to add to the blog. I promise I am here! :)

Well, I am home along today with Maia. I do not mind in the least bit that the rest of the family is in New York, New York. They are on the streets of Manhattan right now looking at the windows of Macy's and trapsing through Toys R Us, etc., etc., etc. I can't imagine taking a newborn through the windy streets of NYC today. So we are home. This down time gave me a chance to catch up on my blogging and uploading of pics from the past week. I got some cute ones!
We have had a wonderful time just chilling and hanging out with the Sutherland side of the family this week. It has been such an amazing blessing to have them up here to see Maia and to just be a family for Thanksgiving. Gideon is not going to know what to do after this family marathon is over. My parents might be back up near the Christmas holidays and then we might be going through another season without family.

We have also been blessed by many meals from our friends from our church at Cornerstone Calvary and also my "school family" at Calvary Academy. We have been eating so well. God has blessed us with such wonderful sisters and brothers in Christ here in New Jersey.
I talked with my mom the past few days and she had her first chemo treatment on Tuesday. She did fine Tuesday night, Wednesday, and then early Thursday the nausea started to hit. She has been doing moderately well with the help of an anti-nausea medication. Please keep her in your prayers as she goes through the next 24 weeks of chemo then radiation starts up. She told me the other day the Lord only promises what we need; not what we want. He knows exactly what we need. Again...learning to trust him for my life and for those I love!
Maia is doing very well. On Wednesday, we checked her oxygen level and it was at 91! We called a few people on that one! It fluctuates but for the most part is has been in the 80's or higher. Her cardiologist said that there are no physical changes within the heart this week so we go for another appointment in 2 weeks. She seems to be stable enough that Dr. Rivera is willing to wait awhile before seeing me...that seems like a nice big positive.

Saturday, November 15, 2008

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!

Wednesday, November 12, 2008

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!

Tuesday, November 11, 2008

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!

Thursday, November 6, 2008

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 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!

Tuesday, November 4, 2008

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 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!

Saturday, November 1, 2008

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