August 30th Update

August 30^th Update


Today I had an anatomy ultrasound done. Lenah is growing right on schedule and everything looks good besides her heart defect. Her weight is estimated at a smidge over 6lbs. She is also finally vertex/head-down, which tells me she is getting ready. She has been transverse or breech in all previous ultrasounds. It looks as though my c-section will be scheduled for September 23^rd. So her birthday will be exactly two weeks after her big sister Sofia's unless Lenah decides to make her own unscheduled appearance.
I had a cardiology consult with one of the pediatric cardiac surgeons last Tuesday. I have heard all good things about him from many different sources. I liked him. He seemed a bit like the engineer-minded type of person. I think that is probably a very good thing for a cardiac surgeon. He said that all of the information that they have gathered from the fetal echocardiograms is very helpful but there is so much that they don't know until Lenah is out and on her own and they see how she does on her own and get measurements from a transthoracic (chest) echocardiogram. He said that her particular presentation could actually need a less complicated surgery than the open-heart Norwood procedure to start with, but we will not know everything we need to know until she gets here.
I find myself being far more concerned about the logistics and planning care for my older children and balancing that with time at the hospital with Lenah than I am about the “scary” life and death decisions. I absolutely hate the idea of leaving my sweet little baby by herself for even a moment- it makes me quite nauseous to even think about it. I can't really even wrap my head around it all. I am having trouble sleeping and I feel like I will never get everything done that I feel needs to be done in the next three weeks. I desperately need peace in this storm. Once again, I covet your prayers. I am sure that it is in part due to the prayers of our loving friends and family that have helped to sustain us through this time. Thank you all once again.


Lenah's mommy- Edie

August 6th Update

Well, this update has taken me quite awhile to get together. While we were at our Dr. appointment on Tuesday the boys spilled a glass of water on my laptop and I have spent the rest of the week trying to get that taken care of. We had another fetal echo-cardiogram on Tuesday morning and a consult with the neonatal specialist in the afternoon. We had much better news this week than at our last appointment. Our cardiologist showed the images of our last echo-cardiogram to a few of her colleagues and they were also immediately concerned and noticed the leaking of the pulmonary valve right away. It was moderate and constant. Praise the Lord! He has heard our prayers,because at this last ultrasound, our doctor watched the pulmonary valve for a long time and only saw a very intermittent slight leakyness. She says that she has no explanation for this difference. She said that it is possible that the flow from the placenta was just too strong before for some reason, but she really just had no explanation for the difference. I said that I prefer to believe that God chose to intervene. So, at this time we are planning to have her delivered by c-section as close to 40 weeks gestation as possible – the longer her heart has time to grow- the better. She will have immediate intervention after birth to assist and prepare her for her first open heart surgery. We were very happy to learn that Texas Children's hospital has a very sibling friendly environment and all of the children will be able to spend time with Lenah in the NICU. They also have sibling classes to help them prepare and know what to expect when they come to visit.
At this time I feel much more hopeful than I did after our previous appointment. Between these two appointments I had a biophysical profile ultrasound and the doctor said that she saw fluid on the heart and lungs. This added to my concern for Lenah. No fluid was seen anywhere at our most recent appointment.
Also, I will begin seeing a new OB on August 22. I had chosen my current doctor because she is known as one of the only doctors in Houston that will allow a woman a trial of labor and VBAC after having more than one c-section. She is the chief of Obstetrics at Ben Taub Hospital and only attends deliveries there. I am changing doctors because I will need to be delivered at Texas Children's Hospital Women's Pavilion so Lenah will be on site for treatment. I am guessing they will schedule a c-section for the last week of September. I do not at all like the idea of having yet another c-section, but I know I need to do what is best for Lenah. I do concede that there are some advantages to scheduling everything so we can have childcare covered and all of that.
So, once again, thank you to all of you for your prayers. We most certainly appreciate them and you. Please continue to pray for Lenah and for us as we continue to plan for her arrival.

An Update

Friends, this week has been hard. Monday morning we had another fetal echocardiogram done at Texas Children's Hospital. Good news was that there was no sign of fluid anywhere on Lenah's heart. Bad news is that they detected that her pulmonary valve is leaky. This is significant because the pulmonary valve is used to replace the too small aorta and valve in the first open heart surgery- the Norwood procedure. Our cardiologist was hesitant to make any definite conclusions without talking to the cardiac surgeons and before we have another fetal echo in two weeks. If the pulmonary valve continues to leak or gets more leaky,it seems that there is really not much that can be done for Lenah surgically or otherwise. My prayer to the Lord since the beginning of this journey is that He would lead us clearly each step of this journey. Of course, I told Him that my preference would be for her to be healed and that this would all go away. Second to that, I just really didn't want to have to watch my baby and my family suffer through months of surgery, hospitalization, and separation. I especially did not want to have to make a decision as to whether to even attempt surgery in the first place or not.

It seems like it would be easy. You just do whatever you can to save your child, right? But in the back of my mind has always been the thought, save her from what? I know, that I know, that I know, that if my baby ceased to be alive at this very moment, her very next moment would be in the presence of Jesus. How could that ever be a terrible thing? Is prolonging her earthly life, no matter the suffering, really the best thing for her? For us? I know we are not the first people to navigate these tumultuous waters and I wish that no one else would ever have to traverse a similar path after us. But here we are and it stinks. The flip side is do we avoid suffering even though that we know that out of suffering can come amazing things...beauty from ashes and such. Do we deny the possibility that there is a greater purpose even in great suffering? I think I have cried more tears in the last 3 months than I have in all my previous years before.

Those that know me, know that I have a hard time “enjoying the process”. When something needs to be done I like to get it done and get it done now or avoid it all together. Not that this is something at all to be enjoyed, at this point I'd just like to be through this valley. I am tired of this process. The last trimester of pregnancy can be difficult under the best of circumstances. Right now it seems ….I don't even have words for how it is.

So, I guess for now our greatest needs have not changed. Please pray for us. Our next fetal echo is scheduled for August 6^th. We just ask that the Lord would lead us clearly. Thank you for praying.

Anatomy Scan Update

Good morning everyone!
Yesterday's anatomy sonogram revealed NO ADDITIONAL ANOMALIES. Yay! Lenah is right on target for gestational age and the spot of fluid on her heart is almost gone. We are so very thankful for a good report. Also, the lady that did our sonogram was a complete answer to prayer. At our first sonogram the lady was very unprofessional and uncaring. She said some very upsetting things to us. I was dreading the possibility of facing her again as there are several technicians at the clinic and you never know who you will get. The lovely woman I met yesterday was so compassionate and loving. At the end of my appointment we hugged and she told me she would be praying for our family. Folks, that was almost as wonderful as learning Lenah has no other detectable defects. The Lord continues to show His great love and faithfulness to us. Thank you again for your love and prayers for all of us. We appreciate all of you walking with us through this journey.

Fetal Echo Update

We are finally back home and settled in from our Dr. appointment today. First of all, up until today I was not completely convinced that she was a girl because she never gave us a full look-see. But today I am fully convinced, as we were given a clear view that she is indeed a feisty little girl. The fetal echocardiogram ultrasound took a very long time as our baby girl is VERY wiggly. Many structures that they need to get clear measurements of were difficult to capture. First of all, good news is that she has good prograde flow in all of her arteries/veins as they should be and she has good profusion to her brain. Not so good news is that her left side of the heart is even smaller in comparison to the right side of the heart as it has not continued to develop. Also, there is some fluid on her heart that is a concern and indicates that she is under some sort of stress, but the cause is not apparent. We have an anatomy/growth ultrasound scheduled for Friday and will be looking more closely at all of her other anatomy. I am praying that there are no other abnormalities discovered at this appointment. Please continue to pray for us as we continue to monitor her growth/progress.

Good news!

Huge good news report! Our medical costs have been taken care of. We no longer have to worry about future medical bills. We are so very thankful. Also, our next fetal echocardiogram has been scheduled for July 2 at 9 am. Please be praying that Lenah's heart has improved and has not gotten smaller on the left side in comparison to the right. We received a copy of the cardiology report from her previous echocardiogram and the findings were consistent with Shone's complex you can see more about this at wikipedia. It seems as though Shone's may be a little less severe than HLHS by the surgical treatment is much the same. We can't thank you all enough for continuing to pray for all of us.
Lenah's mommy- Edie

Dear friends-
Our family has decided to take a technology break for the month of June. I'm not sure if it will make our lives more or less stressful right now, but I just feel like the internet has pulled me away too much from my children. I think I need to focus on them and try to not focus on our future trials.
We will be scheduling our next fetal echocardiogram for the first week of July. I will post at that time if there are any changes in her condition/diagnosis.
We are also considering moving to be closer to the hospital for the inevitable driving back and forth. Please continue to pray for us as we navigate these big decisions for our family.
I will be checking my e-mail periodically, so if you sense a need to contact us for any reason during this time, you can e-mail me at wraymomma (at) yahoo (dot) com.
Thank you again for your support and prayers. It really means a lot to us.