"In all their distress, He too, was distressed and the Angel of His presence saved them; He lifted them up and carried them..." Isaiah 63:9
We have received so much information about Elysha's condition over the past few days that our heads are swimming.
On Monday we spent the day at Mount Sinai Hospital in Toronto. We had a 2 hour ultrasound and did receive the good news while we were there that almost everything about her is normal.
Following the scan, the doctors consulted together, did another ultrasound then sat down with us. They gave us a preliminary diagnosis but defered to the paediatric cardiologist we were then booked to see at Sick Kids Hospital the next day (Tuesday). We were also refered to the High Risk Pregnancy clinic because in addition to the heart issue, there are issues with the uterine artery which is preventing enough nutrition and blood flow reaching the baby. It is not as much of a problem now as it will be during the third trimester when she needs to put on weight.
Tuesday: Sick Kids Hospital for a fetal echocardiogram. It's basically a specialized ultrasound. This one was also almost 2 hours in total, after a brief break while the cardiologist took a look at the slides. We then had to wait while the doctor reviewed the data and (unknown to us at the time) consulted with collegues.
We then had a 35 minute consult. It is actually worse than what we were initially told at Mount Sinai. Here is what we were told.
1) Dextrocardia-the apex (tip of the heart) is pointing to the right as well as the heart itself being over to the right. So the heart is reversed.
2)The pulmonary artery is narrowed and may continue to narrow
3)The right and left atriums (the top "filling" chambers) are in the correct place (for her reversed heart) but the left ventricle is on the right and the right ventricle is on the left (bottom "pumping" chambers). If you don't know anatomy, they do have different destinations (right to the lungs-lower capacity and left to the rest of the body-higher capacity) and need to be connected to the corresponding atriums so this is not a good situation.
4)She has a VSD-Ventricle Septal Defect. There is no division between the right and left ventricles so the oxygenated and deoxygenated blood is mixing, basically diluting the mix depleting the oxygen.
5)The pulmonary artery and aorta both feed into the right ventricle. The pressure is not enough to get the blood flow to the body and lungs in an adequate manner.
6)There is an unknown issue with a duct that because of the dextrocardia, they couldn't get a good picture of on the ultrasound. We'll find out about that after she's born.
7)One concern that may be showing up (they were seeing a drop in the baby's heart but could have been caused by other things) is that the electrical nodes that regulate beating and rythmn may lose the ability to communicate because of the VSD. If that happens, cardiac arrest and stroke are likely after birth.
What can they do?
Well, in addition to presenting us with the problems, we were given the surgical options. They all have very, very good success rates. They are, however, complicated by the dextrocardia and the unknown issues that come up.
The first surgery will be shortly after birth once she is stabalized. We will deliever at Mount Sinai Hospital and she'll be immediately transported to Sick Kids into the Neonatal Intensive Care Unit (NICU). Within 6 weeks they will put in a shunt into the pulmonary artery to expand it.
The next one will be between 6 and 12 months of age when she has gained weight and gotten stronger. The right and left ventricles will be seperated (baffle operation). The pulmonary artery will be sealed at the end and have a bypass conduit attached ending in the right ventricle. There will be "overpass" and "underpass" conduits to reconnect the other areas. The goal is restoring normal blood flow direction and pumping chambers.
Subsequent operations will be changing the conduits as she grows and there is a potential for the baffle to become obstructed so that will have to be redone. There may be a need for a pacemaker and a heart transplant if the blood flow does not normalize and/or the pulmoary artery continues to collapse.
We are looking potentially at spending the first year of life or more in hospital with frequent surgeries throughout childhood. We are encouraged though that this is considered to be moderate in terms of risk-they have seen worse cases. We have received excellent care at both hospitals and are so thankful to the Lord we are not in Brazil, or even Acton, as we are closer to Toronto and the GO line which has saved us driving into downtown Toronto. We are also thankful OHIP covers all of this. It's amazing to think that all these things were discovered on a heart that's the size of a peach pit!
We are still adjusting to the news-it may not really sink in until we see her in the NICU but in all this HE IS ABLE! Please pray as we seek His will for us in terms of ministry; we are now exposed to a whole new area that we never would have thought we would ever be a part of.
One last thought. We are fearfully and wonderfully made! Some have asked how Elysha could survive in the womb with such defects. During development, there are two conduits coming off the heart that attach to the umbillical cord. The heart is essentially bypassed until after birth when the cord is cut, then the conduits fall away and are absorbed. Evolution? Random chance? I don't think so!
"My flesh and my heart faileth: but God is the strength of my heart, and my portion for ever." - Psalms 73:26
Thursday, June 21, 2007
Wednesday, June 13, 2007
God's Grace is Enough
Monday, June 11, 2007
New Additions
We have two newcomers to our home...
Richard installed this himself - and did an excellent job. It works beautifully and I am so thankful for it!And...
A 2000 Nissan Quest LXE. Lots of storage capacity, which was already put to very good use for our church picnic on the weekend. We're also looking forward to taking it up north next weekend to Camp ABK. It's a second vehicle (we haven't gotten rid of the Civic) so I can get to and from appointments and, Lord willing, come October get around with the baby.
Friday, June 08, 2007
What a Difference a Day Makes
The Lord revealed part of His plans for us on Wednesday.
We see His hand working in keeping us from going to Brazil and from moving to Acton.
A phone call from our doctor has put us further in to the unknown for the future, but thanks be to God who knows the future and holds all of us, including our daughter, in His hands.
In hindsight, we see now the reason for the length of time the doctor spent listening to our daughter's heart; why the technician doing the ultrasound on Tuesday called a second collegue in to confer; why we had to wait for a 1/2 hour afterwards before going home.
Our daughter has a rare genetic congential defect called "Dextro Cardia with situs solitus" - her heart is on the right side of her body instead of the left and the lobes of her lungs are reversed as well.
If the heart structure is normal, she will be completely healthy and only need a medic alert bracelet in case she ever needs CPR, defribillating, or a chest scan.
Some people with this condition have all their organs reversed and strangely enough, this is actually better because it means all the connections will be in the right place.
They did pick up some restricted blood flow on her scan so we need to go to Mount Sinai in Toronto for a fetal echo cardiogram to see what, if any, structural damage is present. With this condition, between 90 and 95% have additional heart defects. When all the organs are reveresed (situs inversus) the incidenct of heart defects is between 1 and 3%.
In all of this, the scripture reading from the Daily Light on Tuesday (see previous post) in more applicable now than ever.
"I will praise Thee; for I am fearfully and wonderfully made: marvellous are Thy works; and that my soul knoweth right well. My substance was not hid from Thee, when I was made in secret. Thine eyes did see my substance, yet being unperfect; and in Thy book all my members were written, which in continuance were fashioned, when as yet there was none of them."
It is wonderful to know that even now people around the globe are praying for our little girl. The fact that she does move so much is very encouraging. She's letting us now she's still here!
For those of you reading who know the Lord, we appreciate your prayers and will keep updates posted here as soon as we get them. At the moment we are waiting to hear when our appointment will be at Mount Sinai.
HE IS FAITHFUL!
We see His hand working in keeping us from going to Brazil and from moving to Acton.
A phone call from our doctor has put us further in to the unknown for the future, but thanks be to God who knows the future and holds all of us, including our daughter, in His hands.
In hindsight, we see now the reason for the length of time the doctor spent listening to our daughter's heart; why the technician doing the ultrasound on Tuesday called a second collegue in to confer; why we had to wait for a 1/2 hour afterwards before going home.
Our daughter has a rare genetic congential defect called "Dextro Cardia with situs solitus" - her heart is on the right side of her body instead of the left and the lobes of her lungs are reversed as well.
If the heart structure is normal, she will be completely healthy and only need a medic alert bracelet in case she ever needs CPR, defribillating, or a chest scan.
Some people with this condition have all their organs reversed and strangely enough, this is actually better because it means all the connections will be in the right place.
They did pick up some restricted blood flow on her scan so we need to go to Mount Sinai in Toronto for a fetal echo cardiogram to see what, if any, structural damage is present. With this condition, between 90 and 95% have additional heart defects. When all the organs are reveresed (situs inversus) the incidenct of heart defects is between 1 and 3%.
In all of this, the scripture reading from the Daily Light on Tuesday (see previous post) in more applicable now than ever.
"I will praise Thee; for I am fearfully and wonderfully made: marvellous are Thy works; and that my soul knoweth right well. My substance was not hid from Thee, when I was made in secret. Thine eyes did see my substance, yet being unperfect; and in Thy book all my members were written, which in continuance were fashioned, when as yet there was none of them."
It is wonderful to know that even now people around the globe are praying for our little girl. The fact that she does move so much is very encouraging. She's letting us now she's still here!
For those of you reading who know the Lord, we appreciate your prayers and will keep updates posted here as soon as we get them. At the moment we are waiting to hear when our appointment will be at Mount Sinai.
HE IS FAITHFUL!
Tuesday, June 05, 2007
Second Glimpse
Our "mid-pregnancy" ultrasound was today! I have been feeling a lot of movement over the last few weeks and today was no exception. The two technicians were refering to our little one as "jumping bean". I had to keep rolling from side to side to let the techs get the necessary shots and at one point they were going to have me lay on my stomach to try to get the baby to settle down. Hopefully, this level of activity will calm down a little after birth!
We had excellent views, and Richard got a wave a one point. While we don't have an 'official' report, we do know the baby has a 'beautiful spine' (you can see the outline of it on the scan below).
Because the baby would not keep still, we had to wait around afterwards to make sure the films came out clear and while we were waiting, Richard read today's "Daily Light" for us. If you don't know what Daily Light is, it is a daily devotional of various scripture passages on a single theme. We had two of the selections read at our wedding, for those who were there. I've pasted today's evening reading below. The Lord has truly blessed us today!
We had excellent views, and Richard got a wave a one point. While we don't have an 'official' report, we do know the baby has a 'beautiful spine' (you can see the outline of it on the scan below).
Because the baby would not keep still, we had to wait around afterwards to make sure the films came out clear and while we were waiting, Richard read today's "Daily Light" for us. If you don't know what Daily Light is, it is a daily devotional of various scripture passages on a single theme. We had two of the selections read at our wedding, for those who were there. I've pasted today's evening reading below. The Lord has truly blessed us today!
EVENING
JUNE 5
He knoweth our frame; he remembereth that we are dust.
The Lord God formed man
of the dust of the ground, and breathed into his nostrils the breath of life;
and man became a living soul.
I will praise thee; for I am
fearfully and wonderfully made: marvellous are thy works; and that my soul knoweth right well. My substance was not hid from thee, when I was made in secret. Thine eyes did see my substance, yet being unperfect; and in thy book all my members were written, which in continuance were fashioned, when as yet
there was none of them.
Have we not all one father? Hath not one
God created us? — In him we live, and move, and have our being. — Like as a father pitieth his children, so the L ord pitieth them that fear him.
He, being full of compassion, forgave their iniquity, and
destroyed them not: yea, many a time turned he his anger away, and did not stir up all his wrath. For he remembered that they were but flesh; a wind that passeth away, and cometh not again.
PSA. 103:14. Gen. 2:7. Psa. 139:14-16. Mal. 2:10. ‑Acts 17:28. ‑Psa. 103:13. Psa. 78:38,39.
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