Tuesday, May 20, 2008

God is BIG

We were able to gather lots of bits and pieces of information; certainly haven't gotten to the bottom of anything. Overall, I would say it was a small step in a positive direction.

God is BIG... Big enough that He SHRUNK our little man's cystic hygroma from 8.8mm at 12 weeks to 5mm at 16 weeks. Dr. Pinkert, the perinatologist who performed the sonogram today, wasn't even overly concerned about it.

So that's a HUGE praise! Dr. Pinkert said that fetal hydrops could still develop but didnt' think it was too likely, particularly if our echocardiogram next week looks good. He also said that there could be some loose skin on the baby's neck as a result of it being stretched from the fluid, but that it's easily correctable with cosmetic surgery, if that is even needed at all.

The spinal column, development on the limbs, the baby's brain and head all look good. I asked if there were any signs of cleft palate (which can be a marker for numerous different genetic syndromes) and he said that at this point he didn't see any indication of that. He also said he didn't see any signs of spina bifida. So, that was all good news.

Now for the part that wasn't so good. In the beginning of all this, the doctors didn't speak much about the omphalocele (the umbilical/abdominal hernia) because it seemed sort of secondary to the glaring concern of the cysitc hygroma. Now, the omphalocele is the bigger concern. Basically, the baby's intestines and liver (yes, his WHOLE LIVER) is outside of his body. The size of the "hole" (for lack of a better word) in the baby's abdomen where these organs are coming out is smaller than the contents of what's outside the hole since they've continued to develop. This will obviously need very extensive surgery at birth. Dr. Pinkert wants us to go for a fetal MRI at 22 weeks at Children's Hospital, and also wants us to set up a consultation with a pediatric surgeon at that time.

In addition, the wall of the baby's chest surrounding the heart looked a bit weak/thin to Dr. Pinkert. He said that if the heart is in the chest cavity, that that's something that could also be repaired. He said that he wasn't 100% sure that the heart was in the chest cavity, but thought that it was. I think his words were "it's close" to the opening through which the other organs are protruding. I asked him if, as the heart was growing, it could slip out and he said no; it's either in or it's out. Let's hope that next week's echocardiogram shows that it's in!

Dr. Pinkert wouldn't begin to address my question of the baby's viability. I did ask him if there was any sort of reasonable chance that, if the baby is born, he could live a fairly normal life. The doctor's response was that "that's why we're doing all this... that's the hope." So, for the first time I felt like there were other options than the baby either dieing in utero or being born with severe and profound disabilities. There's obviously still a chance of the baby not making it, but it gave me some hope to hear that if the heart looks good and if he can make it through the surgeries and the surgeries are successful, this little guy could live a somewhat normal life. As of now we're still left way up in the air, and are far from out of the woods. Next week's echocardiogram is a pretty big deal.

Other things Dr. Pinkert said were that if the baby makes it, I would deliver via c-section, and that this baby would be in the NICU for quite a while. He did also reiterate, though, what a great thing it was that the chromosome results from the CVS test were are normal. AND, I was even told that I am allowed to get a massage!!! (My doctor before said no... this one said, "By all means! I am sure with all this you could really use one!")

God is good in taking care of the cystic hygroma and it having shrunk. God is good for having the baby's brain, spine, and limbs all looking good. This poor little guy's abdomen needs some work.

So, would you join me in praising Him for the good works He has done so far? And would you pray with us for next week's echocardiogram and our little boy's heart development? Would you continue to pray for peace of mind and heart for Spencer and I as we continue to go to one appointment after another and receive bits of news? And lastly, would you continue to pray that God would move in big ways so that our baby would be healed and that He would be glorified?


Susie said...

Lots of good stuff today! I'll be praying and thinking of you, Spencer and baby over the next week until your next big appointment. God is good. Keep the positive thoughts and energy because they really seem to be doing wonders. All the SAL and PL girls are thinking of you today!

Lauren said...

AHHHHHHHHHHHHHHHHHHHHH!!! I am so excited. That hygroma will be completely gone soon and now we will just keep praying for the omphalacele to be healed. I know with our little one in the womb we have gained such a trust that the Lord will sustain her regardless of her abnormal umbilical cord... but it is for HIS glory we want to see it healed and I pray that same thing for your little one!!! So excited. God is good.

Newt said...

Oh, it's so wonderful to read all this! Best wishes for continued good news for your strong little fighter!

Sheila said...

I am so glad you got good news on the hygroma today. I will keep you in my prayers that his heart is ok and the omphalacele will heal as well. That your little one will grow strong inside of you and will be strong when he/she is born. So much of this baby's strength when it is born depends on yours and Spencer's strength. And God will provide strength for you when you feel you have no more. Lots of positive thoughts for you.


Monica said...

stacy, so happy to be praising God with you for this miraculous news!

Wishful said...

God is good and we are all praying for you and your precious child. I am a lerker, but your story has touched my heart. Your positive outlook and faith will get you far. Hang in there and God Bless you, your husband and your child.

Through God all things are possible.

Crystal said...

So very glad you got some good news today. I hope next week goes great.

Jen said...

*sings* My God is so BIG! So STRONG! and so MIGHTY!, There's nothing my God cannot do"!! Whoo hoo! Great news *beam.*

You totally need to email Emily at Really Living (http://emily0305.blogspot.com/ ) her middle daughter had the issues your son does, and she is Perfectly Fine! She should be able to help guide you along this path you are on. And she is positively delightful, which is always a bonus.

I will keep praying for more miracles!

Emily said...

Hello! Jen sent me here to your blog and I am so glad she did! Thank you for letting this stranger peek in and "meet" your son. I am the mom of three miracle girls. Hope (my 4 year old) was born healthy, although we noticed a small cystic hygroma in her neck/shoulder region when she was seven months old. It was removed when she was fourteen months old and she hasn't remembered since. Our second daughter Matilyn was born with gastroschisis, which is much like omphalocele, except that her intestines and organs floated freely instead of being enclosed in a membrane outside of her body. She had surgery at birth and is now a rambunctious three year old. Our sweet Miller Grace was born last summer with a little brain that developed in such a way that we were blessed with five amazing days with her before the Lord let her go home to Heaven. What we have learned is that the brain is the only thing that isn't really "fixable" to some degree when it comes to these precious babies. Please know what a HUGE blessing it is that your son's brain and spinal cord are whole. The Lord has allowed for some amazing miracles in medicine and there is no reason that your son cannot be one of them. I personally know two moms of omphalocele kiddos, if you'd like me to refer you to them, I will. My Hope doesn't remember her cystic hygroma at all. Mattie's gastroschisis is just a part of her testimony now. I bombard you with all these crazy details about my babies just to say HE IS FEARFULLY AND WONDERFULLY MADE and just like Psalm 139 says, every day ordained for him was written before one of them came to be. You do not have to fear. You are in the safest place in the world - your Father's hand. I'll be praying you feel His touch especially today.

I hope I haven't overwhelmed you. I just wanted to give you a little hope today. Be blessed and don't hesitate to let me know if there is anything I can say or do to help!

Kristin (kekis) said...

Hopefully the good news will continue to outweigh the bad. I'm still praying for continued healing of your little boy and some peace for you both.