Sioux Falls, South Dakota (SD)
(photos by Amy Lawrence Photography, Brandon, SD - We are very grateful to Amy for her ministry of photography.)

 Update 12-24-07

Jaret passed away last night.. Update coming later.

Terri

Update 12-22-07

Jaret was born Friday, Dec 21, 2007 at 6:18 AM at 5lbs 1oz 17.5 inches long @ 34 weeks gestation after three days of induction labor. The doctor said that he needed to be born early due to growth retardation and lack of fluid in the placenta.


PLEASE PRAY-----------

Jaret has been struggling with keeping oxygen... We are taking one day and even one minute at a time. Cardiologist report tonight was not good, and he said that they'll run some more tests tomorrow. We'll take it from there. There is double outlet right ventricle, VSD, and small left ventricle as we knew...

 UPDATE 12.22.07 CARDIOLOGIST WILL CALL OMAHA TO SEE IF A HEART SURGEON WOULD BE WILLING TO WORK ON A TRISOMY 13 BABY. We should find out the result of that call on Monday, Dec 24.

Jaret is on a ventilator. He has been given several medications including prosteglandin to keep his ductus open due to narrowing aorta. Heart is not pumping normally: is on dopamine and dobutame (a blood pressure issue). Lungs not mature- too small- hypoplastic. {I can't spell all the medical stuff, sorry} UPDATE 12.22.07 One of the meds was removed from his regimen. And his lungs are working pretty well now. They are working on weaning him from the big ventilator. He seems to be getting some to most of the o2 out of his body.

They did up his sedative and some pain medication. He has been fighting the ventilator and moving around too much. He gets upset when people stroke him too much and when his diaper gets changed- he desats.

There may be a platelet issue so I just signed a consent form for transfusion of blood if it becomes necessary. 12.23.07 @ 1:00 AM

A few non-life threatening anomalies. More than we had originally seen including a cleft palate on the inside of his mouth. Right hand has six fingers. Left foot has six toes and is rocker bottom. His penis is very small. I just found out tonight that he has no eye balls. His eyes are not fused- there's just no eyes in the sockets. Aplasia at the back of his head.

He's looking better than yesterday and even last night. Overall he's looking a lot better. We still don't know exactly what's going to happen. We will let God be God. I am praying for HIS wisdom in the decision making which is so very difficult. I have to remember this child is God's child first. To God be all the glory no matter what!

I don't care what the reports are. We love this child, this sweet and precious child from God. This little blessing in a special package. I am committed to love and care for him. And let God be God.

Please pray for Jaret, the doctors who work with him, the nurses and all the other personnel who work with him... Please pray for wisdom and guidance from the Lord so that we know what decisions need to be made.

God is good all the time. No matter what things look like- good or bad. God is worthy to be praised. AMEN.
Terri and Jamie

 
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Update 10-31-07
Return visit to cardiologist in SF. HLHS is no longer the heart anomaly, rather, unbalanced AV septal defect with small left ventricle was noted. Previously the main artery to the heart was paper thin- it is now normal size. The left ventricle has grown to about half the size of the right ventricle and is now pumping blood. There is a hole between the left and right ventricles in the septum, which is not supposed to be there.

Jaret's heart rate is still normal at 155. The cardiologist was cautiously optimistic and will treat Jaret like any other baby. 'IF' Jaret needs surgery it would only be a one step surgery, and they are now willing to fly him to Omaha if necessary. The cardiologist mentioned running some tests on Jaret once he's born to see what problems he actually does have. In a nutshell: the visit went much better than the previous visit, and this doctor is very kind to us. He told us that he didn't see any reason why we couldn't just deliver Jaret in SF. Avera has a nic3. We will be returning to him on Dec 10 for another echo and will see the other peri on that same day.

For fun we went to Bloomington and had a 4D ultrasound session. Jaret's face looked normal to us- no flat face or abnormal orbits. Jaret was busy sticking out his tongue and licking the cord. He also was sucking his arm. Oh, so cute!

We are still praying for Jaret every day and thanking God for all He has already done in this tiny miracle!

Jamie and Terri

10.18.07 We received notice from Minneapolis that they are not able to help Jaret due to the severe chromosomal defect and HLHS.
 

Update 10-22-07
Today's prenatal visit Jaret's heart rate is 150 ( I'm not saying 'was' for a very deliberate reason! ). Previously it had been 189. Normal heart rate is between 120-160.

Jamie and Terri

Update 10-11-07
Mayo Clinic Results Summary we received in the mail today(10.11.07) at my request. (The only anomaly disclosed to us at time of appointment was the HLHS and perhaps there may be an extra digit on one hand- but they couldn't be sure of that.)

Summary reads as follows: Multiple fetal anomalies were noted on today's (9.24.07) ultrasound. Of note, abnormal orbits (eyes close set), face (no explanation-perhaps flatter than normal), microcephaly (small head), hypoplastic left heart, echogenic bowel (no degree noted), polydactaly (perhaps one extra digit on one hand), abnormal genitalia(ambiguous), two vessel cord.

Update 9-25-07
The doctor's report is as follows: Jaret has trisomy 13 and hypoplastic left heart syndrome with the artery in or to his heart being very small- with the two vessel umbilical cord (cord not being such a big issue-but I guess it's supposed to be three...). Jaret has the most lethal diagnosis possible. Not only is he diagnosed as t13, but hypoplastic left heart syndrome is also a lethal diagnosis.

No other anomalies were readily found. He appeared to be a perfectly formed little baby.

The two parinatologists at Mayo were very kind to us. But they pretty much told us that Jaret is going to die. That we would have a very difficult time finding a surgeon anywhere who would perform this type of heart surgery on a t13 baby. That it is good to have hope. But that we should come to grips with reality and think about comfort care for Jaret. In other words- just take the minute or two that we would be given at birth and let him die. They told us that Jaret would NOT be in the 1% of survivors, and we should just come to terms with that.

We were told again that Jaret would probably not make it to term due to the heart issue.

Despite that all being said, the one parinatologist said that he would make some phone calls to see if he could find a surgeon who would be willing to work with us.

I told the doctors that we would like to have Jaret in a facility that would let us make those decisions and not have them made for us.

Not all the staff shared our views, that's for sure... Some very hurtful comments were made. But I suppose to give grace to them I should understand where they are coming from.

Jamie and Terri
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9-23-07
We are going to Mayo clinic tomorrow, Monday, Sept 24. Hope to know more about what we are facing.

Jamie and Terri
 

9-17-07
Hi - My name is Terri. My husband is Jamie. We have a 2 1/2 year old son, Dale. We were just diagnosed with a trisomy 13 pregnancy. I am currently 19 weeks along. We have not yet received the final report from the amniocentesis , but rather, only a quick test result of t13. We do not yet know if it is full trisomy 13 or not. Our perinatologist stated that at ultra sound the baby 'appeared to have deformed hands and possibly a deformed foot, but that he couldn't be sure'. Hypoplastic left heart syndrome was found and confirmed by the pediatric cardiologist. Baby also has one vein where there are supposed to be two. I think he was talking about the umbilical cord. But I think that I was in too much shock to totally comprehend everything that was being said to me. We will have the final report in a matter of days.

What I did get from the doctors is that our baby is going to die. Period. They are unwilling to help us here in Sioux Falls. They are refusing to provide the medication needed at birth to get baby to heart surgery because they said that baby is not a viable life. They told me that I am being cruel by wanting to save his life. (They told us at the ultra sound that it 'appeared' that baby is a boy but could not be sure of that either. -So we will know that in a few days as well.)

The doctors told me that I probably will not carry to term, and if I do, baby will die right away. That baby would be severely mentally retarded thus not worth the heart surgery.

I am a fighter. I am a Christian. I believe in a great big GOD who can do great big things! I am up for the challenge!!! Don't ever tell me that something is impossible! Nothing is impossible with GOD!!!

This brings us to this wonderful web site. Thank you for giving us some hope. We realize the odds that we are facing, and we are willing to face whatever we have to in order to preserve the sanctity of human life. God does not make mistakes.

My family practitioner, as 'realistic' as she is, is granting us a referral to the Mayo Clinic to see the Maternal/Fetal specialists there. That will be our starting point. We 'think' that we'll end up in the Twin Cities where there is a wonderful children's hospital. We pray that we are able to schedule a 'c' section birth there due to the fact that baby would be in a terrific hospital in order to receive the heart surgery that he will need to save his life. I am not limiting God to surgery. Hey, God can choose to heal this little person while he's still in my womb. But in the meantime we will trudge forward preparing for baby to live.

If we stay in Sioux Falls for medical treatment our baby will die for sure.

If anyone out there has faced what we are facing, and your child survived, please contact us. Left heart hypoplastic syndrome with the one valve umbilical cord where there are supposed to be two??? (Doc said that more than likely baby would go into cardiac arrest and die before birth due to these issues.) We are not sure what other t13 issues our baby has yet.

Does anyone know if 'every' t13 child who survives is severely and or mildly retarded. (I really hate that word.) The doctors told us that our baby would be severely retarded and would be a vegetable if he was given heart surgery to save his life. And that we were being cruel to delay the inevitable. How would they know? And does it really matter?

We will have more information about our baby's t13 diagnosis once we return from Mayo Clinic. The ultra sound equipment and specialists there should give us a better idea of what we are facing.

We are standing on God's Word for healing for our unborn baby. We are believing for a miracle in whatever package the Lord delivers it to us. Life is precious. Every life is precious.

Jamie and Terri