With God all things are possible

How true!!! With God all things are possible. Yesterday our chaplain said we do not walk by sight but we walk by faith. That is how we are walking now. Matt and I are holding on as tight as we can to the faith we have. I have always had peace about Isabella and that peace I will continue to have.
The doctors have decided to leave her on the Viagra. Even though it is not changing the echo results, they have now decided that she seems to be getting better. It could be because of the Viagra that she is getting better, so lets not rock the boat. They are sending the Rehab people by next week to assess her and see what her possible max potential will be. I am just going to try to walk away with the information we need to help her rehabilitate.
Her occupational therapist came by today and was so impressed with the way her muscle tone is. She was so rigid for so long that they didn't know if she was every going to be able to do anything. Well, praise God she is now relaxed and doing great. They quite using those silly hand splints that she hates. Matt and I put them on her hospital bear. So now he is sporting those hot pink hand splints. He doesn't complain as much about them as Bella did.
So, she is doing great today. No real changes in her plan of care. We are working towards getting a go home date. She is snoozing away right now.

FAITH. HOPE. LOVE.

The Power of faith

Okay, I am much better now then a few hours ago. I went and walked around and recollected my thoughts. Of cource I read the word and prayed and I thought, you know I have always had such a strong faith that Bella is going to be healed and I need to stand by that. So, I picked her up and told her "Don't worry Bella mommy still has faith that you are going to get better." I keep letting the doctors shake my faith. I know now that I need to stand stong and firmly believe that God is going to heal her. In Mark 5:25-28 there is a woman with the issue of blood. She says that If only I may touch but his clothes, I shall be whole. She continued to speak this until she saw herself well. "I shall be restored to health, I shall be restored to health." She however did not look any better and did not feel any better but so she began to be more specific. "When I touch his garment I shall be restored to health." So when she touched his garment she was restored to health. This story in the bible speaks volumes. It reminds us that we must have faith. Faith is what allows Matt and I to get out of bed every morning. It is what gets us through every single day. On days, like today, when we feel the world is crumbling, we remember that faith that we have that our little girl will be healed!!!

Everything that has happened to us with Bella has brought Matt and I closer to each other and closer to God. She is a true gift from God.

Know that right now Matt and I have faith and we have peace. No matter what the doctors may say, I have faith.

One last thought to share: One of the nurses today said to us that all we need to do is look at Isabella and see that she is getting better. Nevermind what the echo may indicate. She is acting better and looking better. So, they will do another echo in a week. I don't know if the results will change too much, but I am now going to focus on what I see from Bella. If she continues to get better, then that is what we are going to go with. We all know she is a fighter. I think it is pretty amazing that a 8 month old baby girl knows how to fight harder than most adults I know.

As always thanks for all of the prayers. We know God can work a miracle!!!

Megan, Matt and Bella.

No change on the echo

We just go results from the echo. There was no change in her pulmonary pressures. This is not the best news. They will do another echo in a week and if there is still no change, then they will be taking her off of the viagra. The comfort team has been meeting with us alot today. We are so frustrated because it seems like nothing is working. We don't know what is going to happen, and that is the scariest part. Apparently the opthamology report actually says that she is blind. They do not believe that she can see anything. The part about needing glasses is if she gets better neurologically and it seems that she can process images in her brain, she will need glasses because of her myopia. The doctors here I think are all really unsure if she is going to live. It is so hard to continue to have hope when the medical teams are loosing their hope. Isabella is having a good day though. She seems happy and content. she is continuing to gain weight. However, Matt and I are having an awful day. I can't understand why and I don't think I will ever understand why we are having to go through this. It is so heart breaking watching your child have to suffer everyday. I am not ready to say that enough is enough with her yet. I still have hope and I still pray everyday that she will get better. My heart is breaking and I don't know about anything right now. I feel so sad, frustrated and angry all at the same time. I just want my baby girl to get better. I want to watch her grow. I can't even imagine life without her. I know that God does eveything out of love. I don't know where I am going with all of this except that I need to let some of my frustration out. I feel like just when we think it is all getting better, someone comes along and busts our bubble. Prayer and lots of it is what we need. Please pray. This is all up to God now. The doctors are down to the last staws on what they can do for her.

Chunky Baby!!!

Well, no word from the echo yet. Dr. Allen said they should know something in the morning. So, my guess is that they have not even read it yet. She looks great though. She seems to be very happy!!! She is not smiling yet, but I can tell she is about to. The eye exam indicated myopia, which means nearsightedness. The opthamolagist says that she is going to need glasses, but other than that, I guess she can see fairly well. She is focusing more and more everyday. She looks huge tonight. I think she got chunkier since Matt and I left on Monday. We will weigh her in the morning after her bath to see just how much weight she has gained. She is getting so chuby in the face, that you can no longer see her neck. The only problem is, that her trach ties are irritating her neck now. They are putting nystatin powder on her neck now to help with the irritation. I can't wait for everyone to see just what a chunky baby she finally is!!! So, we are keeping the faith and eagerly anticipating the echo results. Regardless what they say, she is looking so good. The prayers are working. Keep the faith.
lots of love
Megan, Matt and Bella

Bella the Super Baby!!

I just got off the phone with Ed, Isabella's nurse. He said she is going great. We are going to be heading back to KC in just a little bit. She actually got to have tummy time yesterday. She has not been able to lay on her tummy in a really long time. She is going to be having an echo later on today. So keep the prayers up that the pressures in her lungs have gone way down. She is a little fighter and I know she is going to do great despite what the echo may say. She is SUPER BABY!!! She had an optamology exam today but I don't know what they had said about it yet. So, we will see if they are going to send her home next week. I think I am ready for her to come home. I am a little nervous, but like I said before, It's going to be a leap of faith!!!

Getting closer to going home!!!

Matt and I are going to head back to Oswego today to get everything ready for Bella to come home soon. She will probably come home sometime next week. They have to get nursing all lined back up again and all of that. She is doing really good today. We gave her a tub bath today. She really didn't think to much of that. She gave Matt a half smile today!!! That is a big improvement. Wednesday is the big day for her echo. It will tell if the Viagra is working or not. Please keep praying that it is working. Her nurse Becky and I listened to her murmur yesterday. It seems to us to sound a lot less high pitched. This is a good sign!!! Will will be calling several times a day to check on Bella while we are at home. We will be coming back Wednesday afternoon so we can get the echo results. I will keep everyone posted on what is going on. We have to go see our other babies!!
Lots of Love
Matt, Meg and Bella

Aunt Stephanie's Dream

Isabella's Aunt Stephanie told me about a dream she had the other night. She has been doing really good about keeping her laundry caught up. This has been really important to Steph that her laundry stays caught up. Well, she dreamt that all of a sudden she was swimming in laundry. She had so much laundry to do that there was no way she could ever catch up. She was in her living room folding clothes when Matt walked in her house. He said "Hey Steph you have to see this" At that moment she saw he was holding Isabella. He put Isabella down on the floor and she started to walk across the room. She was free from a vent and free from a trach. At that moment Stephanie no longer cared about her mountain of laundry. She realized that ISABELLA COULD WALK and that was all that mattered.
Isabella is a true gift from God. She can remind us everday what is important in life. She has shown us miracles already in her short life of 8 months. She has fought through more than most of us do in a lifetime. She was declared blind and deaf but can now hear. I also believe she can see to some extent.
The doctors are talking about sending her home this week or the next. Matt and I are really scared. We really need your prayers. I know that we can not stay in the PICU forever but it feels safe here. I don't know if God is wanting us to just take a leap of faith and bring her home. I know only our father knows what he holds in the future for Bella. I know he only knows if she will get better or if her life will be cut short. I am scared of the thought of loosing her. Matt and I need your prayers for strength to make this leap of faith and bring her home. Isabella also needs your prayers that the Viagra is the missing link to her getting better. She still needs another miracle. I believe in the power of prayer, so please pray. She has an echo on Wednesday that will show if the vessells are getting better with the Viagra. Dr. Klem today said he did not think it would work. I hope and pray God will prove him wrong.
Keep praying and believing!!! This little girl is changing hearts all over. She is pretty amazing!!!
Love
Matt, Meg and Bella

Little Baby Drool

Today has been a great day. Isabella is showing improvement with each passing day. She was really focusing on me today and then she reached up and touched my face. I still have not gotten any smiles out of her yet but she had that twinkle in her eyes today like she could smile at any time. I miss that beautiful smile of hers and I hope and pray it is only a matter of time that she smiles again. She is so slobbery today. She is cutting teeth and she is flips out if her pacifier is not in her mouth at all times. She just chews and chews on it. Her daddy nicknamed her "Drool" Well I think I told everyone that I throught her hair was turning blonde again, but I was wrong it is RED today. So I do really think she is going to be a little red head.
Today Matt and I went to the celebration of Life for little Gabi Acker. We would like to ask everyone to keep praying for Micah and Jason because they need it. Also, if you want to see Gabi's blogspot, there is a link under Bella's Link. It is important to Jason and Micah that Gabi is never forgotten.
We have met a new Truncus Family here. They are really sweet people and they have a two month old baby girl named Lucy. She had her first Truncus Repair on Thursday. She is doing well but keep her in your prayers also.
Gotta get back to little baby "Drool" We have spent most of the day just cuddeling!!!
Lots of Love as Always

The perfect Poem

Scroll down towards the end of the page and you will find a poem called "Welcome to Holland" It is well worth your time to read this poem. The first time Matt and I heard it, it really spoke to us. It explains better than anything else I have ever heard about what it is like to have a child with a disability.

A baby on Viagra????

Yes they really put Bella on Viagra. She needs something to relax her pulmonary vessels and help her lungs which in turn will help her heart function. They said if this works, then her valves will be less leaky. So lets pray that this works. I have a really good feeling about this.
Also the visually impaired people came by today. They showed Matt and I ways to help stimulate Bella's vision. She focused on a balloon today and on a red ring in front of a blue background. They told us to start simple with contrasting colors. She seems to beable to see at least a little bit. YEAH. She looks fabulous today. Dr. Doom and Gloom Klem came in today. He just seems so negative to me. I know we are not sure about her outcome but come on now lets focus on getting better instead of what COULD happen for her to get worse. Matt and I are fully aware of how this could all turn out, but if we dwell on that side of it all the time, we would loose our sanity. He goes off service after the weekend and we get a new dr. I just want her to be surrounded by happy positive people. So Bella and I have been spending the day just rocking and cuddeling. Keep praying. I really hope the viagra is the missing link to her recovery.
As Always lots of love!!!!

The world is praying!!!

We received a card today to let us know that Isabella is being prayed for by people all over the world. It is a card that says she has been enrolled in the Claretian Perpetual Mass League which means her name will be recorded in Rome by our Father Superior and perpetually remembered by the Claretians in Masses said through out the world including those at the National Shrine of Saint Jude. Now that is awesome. I believe in the power of prayer and that if it is in the Lord's will, she will be healed. Thank you to all and continue to pray for our precious baby girl. I believe God has great things planned for her.
Lots of Love to you all
Meg, Matt and Bella

You want me to do what????

Physical Therapy has now made Isabella some hand splints that she has to wear on hour at a time. They said she is not opening her hands up as much as they would like so they are making her wear these splints. She hates them!!!! She is really stuborn and throws a big fit when they put them on!!! She's such as silly girl. She continues to do very well. Matt and I are heading back to KC after Abby gets out of school today. I can't wait to give Bella lots of hugs and kisses.

Another Day, Another $12,000

No seriously that is how much is costs to stay in the PICU for one day. Isabella is already a 2 million dollar baby!!! She's so worth it.
Anyways, Bella had a great day. She was getting weaned off of her oxygen. She has one of her favorite nurses tonight Becky, so I know she is in great hands. Matt got to go by and see her today on his way to a concert. He said she looked great. Becky put the phone up to her ear when I called so Abby and I could tell her hello. Becky said she looked around a little while we were talking to her. She also said she has really noticed her starteling to noises. YEAH!!! I know all of the prayers are working. We will be headed back to KC tomorrow evening to see Bella and stay with her thru the weekend.
Lots of Love
Matt, Meg and Bella

On the Growth Curve

For the first time ever, Isabella is on the growth curve. She has always been way below the curve and now she is in the 50th percentile. She is very alert today. I swear she was looking at me today and that she could actually see me. She stayed focused on my face for several seconds. So keep up the prayers. I really think they are working!!!! No new changes in rounds today. She is back on her home vent and doing very well with it. We are hoping to be able to come home soon. She has to stay stable for a long period of time before they will even think about letting us go home. Matt and I are going to come home today to see Abby and Madison. I hate leaving Isabella but she has lots of people here at the hospital who also love her. I think she is a bit of the PICU princess here. The nurses are all wonderful and they all love her very much.
Keep up the Prayers
Megan, Matt and Bella

My Baby's Heart

For those of you who know Bella, you know her story but for those of you are stumbling across this here is Isabella's story (in the short version).
After birth, her pediatrician noticed a heart murmur. She was then after three echocardiograms and a cardiac cath diagnosed with Truncus Arteriosus. It is a congenital heart defect that means her aorta and her pulmonary arteries are basically one vessell. That means she was pumping mixed blood at all times leaving her in a constant hypoxic state. She was also found to have a deletion on her 22nd chormosome called DiGeorge Syndrome.
So, on February 27th she has open heart surgery to put a homograft in to extend the pulmonary artery from the aorta to allow her to pump blood the way it is suppose to. She stayed in the hospital for 17 days after surgery.
7 days at home after surgery, she was on a helicopter back to Children's Mercy with Respiratory Distress. 7 more days and we were back home. She was doing okay at home and we thought the worst was over. Then after a month at home we were back on the helicopter to Children's Mercy for another 24 day stay. Still at this time they could not give us any clear answers as to why she was having respiratory distress.
This time we went home for 10 days and then back again by med flight. They decided to finally put a trach and a feeding tube in. She was doing great for a really long time. She stayed for 47 days and was on her way home. We really thought the worst was over this time. We went home with 24/7 nursing care with a ventilator, suction machine and the whole nine yards.
We were home for a full 4 days when she when into septic shock and needed flown back out to the hospital. This time she was in really bad shape. I remember sitting with my mom telling her I thought this was it and that we were going to loose Isabella. This was July 30.
So back in the PICU. On August 1st she was still very critical and she coded. They did chest compressions for approx 20 seconds and came back out of it. She has now started having seizures.
From the sepsis and the 106 temp and lack of oxygen she suffered some brain damage. Doctors tell us she is now blind and deaf. Matt and I have noticed that she is responding to us when we talk to her and she is responding to other noises around her. They are telling us now that she can see lights and shadows.
For the most part she is doing really well right at this moment. The cardiologists say she has small pulmonary vessells that lead out to her lungs and that her truncal valve is insufficient and the homograft they put in is insufficient. So right now our only option is to wait and let her grow. She has gained a pound and 1/2 in the last week!!! That is saying a bunch because we were stuck on 8 pounds for 4 months.
So right now I am sitting here in the PICU with Isabella and my husband. I was inspired to create this blog by some new and dear friends of ours Micha and Jason. They also had a baby with a heart defect but sadly they lost her last night as she passed away to be with GOD.
I want to thank all of our family, friends and all of the others who have been praying and raising money for us. We love each and every one of you.
Love
Matt, Megan and Isabella