Waiting to Exhale

Hi Everyone! Well, it's been a little while. Luckily, for me, just a little over a month...but it seems so much longer. Since V's last hospitalization, things have been great! She came home and was so much better within a few days! We knew, though, that she had a heart catheter procedure coming up in exactly one month. This catheter would be more of a risk, as they wanted a good look at her pulmonary arteries. In order to get a good look, they had to go in with the cath that is almost the same size as a shunt, THROUGH one of her shunts. This blocks blood flow that she normally receives and relies on.



Veiyah hasn't been so great around people lately. ...Do ya blame her?

This last cath was pretty hard on me as a Mommy. Knowing she is having not only what's called "white coat syndrome", which is a fear of Dr's or nurses etc., but is also having anxiety around anyone who walks through our front door...including family. :( So, when we took her in for her pre-screen she knew right away where we were. Daddy has his way of getting V's full and divided attention and she was mesmerized by his silliness. This is one of my favorite pics now...



So they decided that day to skip her weight, height, blood pressures and also her lab draws. They decided to take our word for it, that she was healthy, and wait till she was asleep in the cath lab to do anything. The next morning we took her in and she, again, knew where we were and that she was going to get picked on. We took her in to be with her while they put her under. In the past, Veiyah has just sat there and played with the gas mask and fell asleep quietly. This time that was not the case. My baby girl looked like she was fighting for LIFE. She looked at me like, ummmm HELLO MOM! Do you see what these people are doing to me? STOP THEM!

All I could do was sing to her while I cried myself. Trying to keep her calm, I hid my tears, but hearing her scream through that mask was like watching someone suffocate her. No joke.

She finally fell asleep but it was during a cry, so she had a worried look on her face that slowly relaxed...but I walked out of that room an absolute MESS. I knew she was going to be okay, because I trust these Docs so much! I also trust God with the Dr's! ;) It was just so hard to watch her fear. I wish she understood that what was happening wasn't going to hurt...that even Mommy wanted some! ...heart mom's...am I right? ;)

Instead of posting lots of pics of Veiyah in recovery, I decided to post a picture of her on her way there that shows her as normal as can be, and on her way home as normal as can be! Because honestly, that is what we praise God for each time. That we leave with the same Veiyah we went in with. She may be a little more tired, but that sun is hitting her just right...precious.




I still wonder when the day will come when we will be able to exhale. We left the hospital and were told that they wanted to have a conference about Veiyah in TWO (2) Mondays. That's too long to wait for any answers! Well, that Monday just came. I'm going to hand the mic over to Jer now. He's so smart~ :) This will explain what they found with this last cath and what they discussed at the Veiyah conference. Afterward, I posted a couple pictures of Madi and Selah on Easter morning. They are so amazing. They are such rock stars when it comes to this stuff....and to how they choose their outfits for such an occasion as Easter. :)




Hey Family and Friends,

Jer Here. I'll explain what I can, as we still didn't get a clear answer yet.

The next “normal” heart surgery that Veiyah should undergo given her heart structure is what is known as the Glenn procedure (Glenn Procedure). This procedure was attempted on Veiyah last year but failed. We were told that the reason it failed was because her pulmonary arteries were small and so the pressures in those arteries were high, which was not conducive to the way blood moved through the heart and lungs after the Glenn procedure. So the Glenn was reversed and an additional shunt was added at that time to get enough blood flow to the lungs.



After the last cath this last month, we were told that the size of Veiyah’s pulmonary arteries was good. At that time there was no mention of the pressures in those arteries, and so it was assumed that because the size was good that the pressures were also good. The other item of note from that cath was that her SVC (Superior vena cava) had again almost completely closed. This was the area that had to be ballooned in a cath back in October. The SVC being and staying open is critical in order for the Glenn procedure to be successful, so there was concern noted at that time regarding that. There were several other options discussed at that time but no decisions were to be made until the entire heart and surgery teams could meet to discuss them.



Yesterday we heard from our chief cardiologist regarding the conference on Veiyah that took place yesterday. Unfortunately there was not a consensus from the entire team on the approach to take. One approach that the cardiology team had considered, which was a hybrid Fontan surgery (Google it), was rejected by the chief surgeon. Another option would be to try the Glenn procedure again and try to do something to keep the SVC from shutting. The chief cardiologist was wary of that solution for 2 reasons. First, after the Glenn failed the first time, the doctors were not 100% sure of the reason. The suspect was the size and pressure in the pulmonary arteries, but they were not certain. Because they were not certain of the cause of the failure, they are unsure how safe a second attempt would be. The second reason is that we were told that the pressures measured in the pulmonary arteries during the last cath were still high. We were not aware of that until now. Veiyah’s pressures were measured at a 16 which is higher than they'd like, with 8-12 being normal pressure for her age/size. So that was a concern with trying the Glenn again. The final option discussed was to add another shunt and/or replace the existing shunts with larger sizes. Veiyah would then be placed on the heart transplant list as non-critical. Meaning it would be a long time before she would get a heart. The shunt procedure would be a stop gap to get more oxygen in her blood until she could get a transplant.



Right now the chief surgeon is reviewing all of the data from Veiyah’s past surgeries and tests. He wanted to do this on his own without the differing opinions from the rest of the team. In the end, it comes down to a surgical decision on how to proceed, and so it is his call to make. He should then be meeting with us to discuss the options and how to proceed. Prayer is needed to give this man wisdom and direct him on how to proceed. Veiyah’s life has and will be again literally in his hands.



Regardless of what approach is taken with Veiyah, the issue with the pressures in her pulmonary arteries will continue to be a problem. We were told that in a normal baby these pressures at an early age are usually high, but then gradually go down. Veiyah’s never went down to a normal level, maybe due to being born premature and/or the stress her heart underwent during multiple surgeries and procedures. Not to mention only half of her heart is functional. The reason for the high pressure is likely due to the artery walls not being flexible enough. As she grows, more blood needs to move through those arteries, and if they are not flexible enough then the pressure remains high or can increase. So this is another area in which prayer is needed.



Finally, the rest of our family needs prayer during the next months. It is extremely stressful to not have a clear promising approach for Veiyah. It is also extremely discouraging to see our little baby girl undergo these ordeals. Every day of her life is a struggle for life. If I could take her place in all of this I would. I don’t believe as humans our mental, physical, and emotional states are supposed to be able to endure such trials. God created us for a different purpose. So we really need prayer for Ani and myself as well as for Madi and Selah. Aderah is doing just fine, so no need to pray for her. Pray that during these times we will be able to grasp the big picture of our existence. That we would be able to displace fear with faith. Because saying that and doing that are 2 very different things.