There is absolutely no question (nor has there ever been) about us giving her life for as long as the Lord sees fit to allow it, so that is not an issue, but the ultrasound showed serious concerns, some far worse than we had anticipated from previous ultrasounds and tests, others not as bad as we had thought. On both sides of this, we remain convinced that the Lord has a plan for allowing these things, and we know that He does not make mistakes. Faith's life, health, and future have all been planned out by our loving Creator God, and she is in His great hands.
This week's ultrasound shows the fluid pockets we had seen on her brain last time to be cysts, but they do appear to be dissipating... or at the very least reduced in size. It is still unknown how this may or may not affect her brain function. Her head shows the typical shaping of trisomy 18, as does her hand posturing. She has club feet (which we did not know before, but it is not surprising, as club foot or rocker bottom foot are very typical of trisomy 18 children). Her spine is beautiful and looks great :) Her abdomen still has the omphalocele (the membrane sac that holds organs outside of her body) - it is believed at this time to at least contain her bowels... possibly her liver, though that is uncertain as of yet - it does have good blood flow, and the doctor said that with the right specialist, it should be fairly easily repairable. The omphalocele has reduced in comparative size since the first ultrasound where we saw it at aabout half the size of her overall abdomen - it is now less than a quarter of the comparable size; it is among the least of her health concerns at this point, and is considerably less severe than we first anticipated it being. This is a praise note :)
The hardest part of the ultrasound was her heart... It is severely deformed. We are told that babies with similar heart conditions often do fine in the womb, but are unable to live more than a few hours beyond birth. Some do live and can have intensive heart surgery to repair the damage. Her aorta appears to be one of the multiple problems and may or may not be repairable. Our doctor, who fully supports our desire to seek medical care for her, has cautioned us that we do not have the medical facilities in this state to care for the profound medical needs she will have immediately following birth, should the Lord see fit to allow her to live to that point, so should we opt for surgical intervention we will have to deliver out of state at a facility that has both the specialists and the technology. The tricky part in all of this is that, as he cautioned, many doctors and/ or hospitals will not even consider such a procedure on a child who promises to be profoundly handicapped both mentally and physically. Her life holds no value to most of them, and some (many) would go so far as to call it immoral or unethical to do anything to prolong or save her life. We can fight this, and search for medical people who will uphold and value her life as we do, but we need wisdom and discernment in this. We need the Lord to guide us in making the best decisions for our daughter.
It's hard to think about getting so far as a live birth only to give up on her then... at the same time, we do not want to push too hard for too much and make her suffer in the process - this is where discernment comes in. So much of this is outside our realm of understanding and experience.
God has greatly blessed us with a medical team here that is loving and supportive (indeed, my OB delivered our youngest two and handled our 7th miscarriage - he has our complete trust as my doctor and we know that he will work as hard as he can to help us preserve Faith's life - yet his ability is limited by what the Lord has in store... we do not know what God's plan is for our little girl's life, and we are trying hard to not have set expectations... only hopes. We were given a very small chance of reaching this point in pregnancy, yet here we are. We are given an even smaller chance of Faith living to birth. We do not know if we will be allowed to know her in this life, or if she will pass directly from my womb into the Lord's hands, as have so many of our other little ones. This is one of those points where trust comes in, and we are tested in our conviction of leaving our family size, our fertility, in the Lord's hands. He is most capable, and He does not make mistakes. He has a plan, and as the Maker and Giver of life, our family rests in His hands. I know many of you do not understand our conviction in this area, and some outright disagree. That's ok :) but it is what the Lord has placed on our hearts, and we must walk by faith the road He has set before us, when it is easy as well as when it is hard. Right now, it's hard. Still, we stand firm in our belief that life is God's alone to give and to take in His perfect timing.
So right now we face some big decisions: do we fight to prolong her life and seek out medical experts who can treat her heart and are willing to help us help her live, or do we allow her what time she has without that intervention... It is hard to know what is best for her in this, so as we research options, we need much wisdom from the Lord...
Second, we are faced with the inevitable death of our precious little one. Again, we do not know when - it could be tomorrow, it could be ten years from now... it could be any time. However, children with trisomy 18 simply do not live long lives... very few make it beyond infancy if they survive birth, even fewer live into the childhood years, but it *is* possible should it be the Lord's plan for them. That said, we are advised to have a plan in place for her remains when she is no longer in her little body. This is so hard to consider, and yet it is reality. We need to decide if we bury or cremate our little one - I can't help but feel that no parent should ever have to deal with such a decision - to outlive their children... and yet, here it is. Staring us in our faces. We need to choose. Again, prayers for wisdom and discernment are needed- once the deed is done, it cannot be undone, so we need to make the right decision the first time.
Anyway, I'm afraid I'm getting rambly and should finish this post. Your prayers are tremendously appreciated - we know that the Lord is listening and is answering our prayers, wether we get the answers we hope for or not, He *always* answers... We know that He is walking through this with us, as He has promised to not leave or forsake us... I cling to that promise. This has been one of the hardest, most painful walks in my life, and yet I can be thankful that we do not walk it alone... we are blessed with a Father-God who carries us when our own legs will no longer do the job. He is our strength when we have no strength of our own. TJ and I are blessed with a deeply loving marriage and a strong friendship between us; we are blessed with many children in our home as well as many awaiting us in heaven. Our hearts are full and our cup is overflowing. Our God is faithful, and He is present, even in times of hurt. We are blessed, too, with friends and family who love and pray for and with us. Thank you. You mean a lot to us!
