Friday, July 29, 2011
Monday, July 25, 2011
Friday, July 22, 2011
Monday, July 18, 2011
Today Mason had a cardiologist appointment with Dr. Parthaban.
We got to our appointment at 9am. We got him measured & weighted. He is now 22.5 inches long and weights a whopping 10lbs 12oz!! ( He needs to be 11lbs for surgery~!) Darcy (our nurse everytime....We love her!) took masons blood pressure & oxygen saturation...Blood pressure was good...Saturation was not so good.
Mason's saturation should be in the high 90s.
His saturation today was 88. not.so.good.
When Darcy was finished (it always takes her a while because we end up chatting for so long!) I nursed Mason till Dr. Parthaban came in. She is always so so friendly. She checked him over and said he was doing pretty good! We adjusted his meds since he had gained a pound since last appt! Then it was upstairs for an echo cardiogram.
I was not looking forward to this part.
But low and behold...Mason slept through the whole thing. (thanks to the overload of milkies he got before they called us back) Dr. P did his echo and when she was finished she reviewed the findings with us.
Here are her findings
His heart is a little worse than last echo. (but normal course for his condition)
His "lower hole " (the VSD of the AVSD) is Very large.
He has a few other smaller "conditions" that have shown up ..but not to much to worry about.
Overall he is doing well and should have his surgery by the end of Sept. She got all the info needed to turn into Childrens Mercy so we can get him on the schedule for surgery ASAP. We ended the visit with a blood draw and then headed home.
We are starting to prepare ourselves for his surgery and start making the arrangements necessary and gathering things we need for Mason's stay. Just praying that all this is behind us soon.
Posted by Mrs. B at 1:49 PM
Friday, July 15, 2011
Last night was hard for me.
One of my "online friends" passed on the news that another lady we knew (who was pregnant & had found out by amnio that the baby boy has down syndrome) decided she couldn't "handle" having a child with DS....and terminated the pregnancy yesterday.
My heart broke.
Tears filled my eyes as I told Cory what had happened.
To think that someone would terminate because things weren't "Perfect"....but they don't understand...because a child with DS is perfect..truly , wonderfully, and innocently perfect.
I looked at Mason after I told Cory and tears started to flow. I picked Mason up and snuggled my sleeping boy. Breathed in the sweet smell of his freshly washed hair, felt the smooth skin on my lips as I kissed his cheek. He is perfect.
I looked back at Cory, who now looked upset, and he said " they just don't know". And its true. They don't know...and many wont ever know. They say 96% terminate a down syndrome pregnancy.... it breaks my heart. To think the world wouldn't want a child like Mason.
Think of it like this...There are 100 pregnant women in a room ... all with DS diagnosis.. only 4 would keep the babies. 4 out of 100.
I am one of those 4
I wonder if we have made an impact on anyone, enough for them to realize that they can do it. That its not as scary as everyone makes it out to be. I also wonder if Mason has made an impact on anyone? Would they keep their baby if they had a prenatal diagnosis.
Did I ever think I would be a parent to a child with special needs?
I really never thought anything like this would ever happen to us. I thought we were immune to things like this...This kinda stuff happens to other people..not us. But God knew that we would love Mason, no matter what challenges arise. We didn't know if we had the strength to do it. Then we saw him for the first time, and we realized that Mason was just Mason. He was the baby that we fought to get here, he is our son. A diagnosis of down syndrome didn't change the fact that we love him, and maybe we even love him more because he has down syndrome.
I sometime wonder if other people love there children as much as we love ours? After having to fight so hard to get Mason here...The love for him is so strong. Stronger than I ever knew.
Until you have to fight for your child to make it into the world... you don't know how deep this love is. Its unexplainable.
And its no where near the love that God has for us.....
We have a cardio appt on Monday... we will know soon the exact date of surgery.
Thank you again for the continued prayers
Posted by Mrs. B at 6:39 AM
Thursday, July 14, 2011
We are back on the see-saw of weight gain. I took Mason to the breast feeding clinic to get a weight check thinking he was doing pretty good..no dice. He only gained 2oz in 5 days.
Its not the worst..
but its not the best..
We go back in on Sunday to see how he did for the remainder of the week. Were hoping that he at least gains half an oz a day.
We have a cardiology appointment on Monday morning & Mason will have a Echo-cardiogram done. They will review the findings and then send everything to Childrens Mercy in KC. Then we shall have our exact date for surgery.
Cory & I have really started to realize that surgery is coming upon us quickly .... Were just not ready for our sweet boy to have to endure open heart surgery. And I dont think we ever will be ready.
On a happier note...Mason got to visit Dr. Gleason today. I was there for my checkup & Mason got to tag along. Dr. Gleason even calls him a miracle also.
Posted by Mrs. B at 5:41 PM
Well the surgery is complete, now its time for God to start healing little Jonah's body. As you can see from the pictures he looks pretty beat up. He started to wake up a little bit after we went back to see him and was coughing, but you couldn't tell he was coughing because of the tube in his mouth. He started to turn bright red so they ended up sedating him so he could move around; he was squirming around pretty good, just like good 'ole Jonah squirms :) He's got tubes or leads coming out of his chest, his leg, his ankle and his neck with about 10-15 different monitors around him. It is a bit intimidating to see all of this around your little baby, but it is nice to see him post-op.
We are so amazed at how God as put Jonah's story into the hands of so many Christians who are lifting his name up. Thank you Church and thank you Jesus; we truly are in awe of how this day has transpired. Please continue to be in prayer for Jonah, the next step is to get the breathing tube out of his mouth; possibly tonight but probably tomorrow and then to slowly wean him off the machines and to begin taking control of his body again. In Christ we stand! ~ D
Posted by Mrs. B at 9:49 AM
Tuesday, July 12, 2011
Sunday, July 10, 2011
Today, July 8th Jonah finally met the man who will fix his broken heart face to face; Dr. Peeler. We first met Dr. Peeler in February after Jonah was diagnosed with a heart defect. We thank God the He has placed Dr. Peeler in our path. Hallelujah! We didn't learn anything new today, but with the surgery only five days away it had a little bit more weight to it than it did back in February. So with that said I want to list some possible complications that could arise and ask you to stand with us in prayer and faith that God is going to bring Jonah through this surgery without any of these complications or issues arising:
- Heart block - This becomes an issue in 3-5% of patients, and due to Jonah's size the percentage increases to around 5-10%. This is basically the electrical system of the heart. This electrical system of the heart is made up of several parts that communicate with one another to tell the heart muscle fibers when to contract. In saying all of this if this were to occur Jonah would need to have a pacemaker put in soon and endure another surgery. This would also mean future surgeries due to battery and cables that would need to be replaced.
- Mortality Rate - Dr Peeler stated this percentage to be 1-2% for this particular surgery, our pediatric cardiologist said Dr Peeler's rates are probably closer to 0.02%.
- Leakage of the valve - They didn't really place a percentage with this one, it is kind of on an individual basis. If no leakage is found then their is a great chance (Dr. Peeler's partner Dr. Maxey stated he would almost say a 0% chance) that Jonah won't ever have to have another heart surgery due to this defect. If the valve does leak it could mean an additional surgery in the future, weather it be 5 years down the road or even longer.
- Infection, bleeding - This is a possible complication for anyone that has surgery.
Jonah's surgery time and date is set: at . Jonah's surgery was moved to the first slot as they try to do the youngest one first due to him having to fast from the night before. The surgery will take about 3-4 hours and he will be on by-pass for about an 1 1/2 to 2 hours and the normal hospital stay is 5-7 days after this surgery.
We are fully trusting in the Lord. Jesus Christ is the foundation of our lives. Everything is for Him and about Him and His glory. Jonah was given to us as a gift from God, created in the womb by God Himself (Psalm 139:13). Yesterday I was thinking about what was going through Abraham's head when God asked him to offer his son Isaac as a burnt offering. (Genesis 22) The scripture doesn't tell us his 'thoughts' but his immediate actions were: him rising early in the morning, saddling his donkey and then splitting some wood for the offering. On the third day he sees the place God sent him too offer his son and Abraham and Isaac go up the mountain. Now Isaac's wondering what's going on, and asks his father where the lamb for the burnt offering is? Abraham tells him, "God will provide for Himself the lamb for the burnt offering, my son." They arrive at the location and Abraham builds the altar, arranges the wood then bounds his son Isaac and lays him on the altar. Isaac has got to be wondering what's going on now? Just as Abraham begins to slay his son with a knife an angel of the Lord appears and tells him not to do it. He has proven (by his actions) that the fear of the Lord (Which is the beginning of wisdom - Proverbs 1:7) is within him as he did not withhold his only son from God.
I am not comparing by any stretch this story to Jonah, but I was thinking how much faith Abraham had in his willingness to do what God asked him in the offering of his son. Isaac was the promised son that was born when Abraham was 100 years old. After waiting all these years for this promised son God now is asking him to sacrifice him...and Abraham was going to do it! In my finite mind I'm trying to wrap my mind around my son Jonah having his chest opened up and his heart repaired. I know that first moment I lay eyes on him after surgery with tubes protruding from his body and all the wires and contraptions everywhere around him I'm going to bawl like a baby. My heart aches knowing what he is going to have to go through. I would trade places with him in a second if I could! Just as Isaac was restored to Abraham we are trusting that God will restore our son Jonah to us.
When God brings Jonah to your mind in the coming days and next week please lift him up in prayer to the God of creation!
In Christ! ~ D
Posted by Mrs. B at 7:02 PM
Thursday, July 7, 2011
After the weight check gone wrong last week. I'm very happy to announce that Mason is back to gaining weight!! Were not sure what was going on but he is now eating 4+ oz at a time and has gained a half a pound already. Were so thankful that he is now gaining and we HOPEFULLY will not have to move up surgery any earlier....
Also, Mason will have a big day on Sunday.....We are having him dedicated at our church.
Posted by Mrs. B at 11:42 AM
Tuesday, July 5, 2011
Saturday, July 2, 2011
Ill make this short and sweet....
Mason didn't gain any weight the last week. I took him to the breast feeding clinic at our hospital for a weight check. He was 9lb 12oz still , took him back again the next day. He lost half a pound *NOT GOOD* but he ate over 4oz (great!) They think he is struggling more with his heart and using more calories then he is taking in. He was showing a few signs of his heart problems also so the nurse called Dr. Nelson to tell her what was going on....her reply..Go to ER. So reluctantly we went (I felt he was ok and what he was doing was normal for him besides the weight loss) ONLY to find out that he is fine . The 900yr old Dr. that saw him actually said to me " you know more about this then I do".......WOW thanks for the bout of confidence DR! So SIX hours after going to the hospital..we finally came home with a clean bill of health.
My thoughts: Mason likes to be at the hospitals on holidays...
Born on Easter weekend
Heart Failure over memorial day weekend
ER #2 on 4th of July weekend.
Please tell me there are no more holidays for a while!!!
Also ... If Masons weight gain doesn't pick up.... its surgery time.
Posted by Mrs. B at 12:02 PM