It's hard to believe my sweet girl is already three days old...and at the same time it's hard to believe she is only three days old. It feels like I've loved her forever and ever.
We had a really good day today. A technician from Dr. Robinson's office came by this morning to do her echo and between the four of us (me, Dustin, Grandpa, and Grammy), someone was down there with her most of the day.
Dr. Robinson came by this evening to discuss what he saw from the echo. My mind is mush and I pretty much cannot be held accountable for anything I say or do at this point in time, so I'm going to tell you what I remember and hope it's somewhat accurate.
The PDA has completely closed on it's own. This is a good thing. Dr. Robinson determined that she has acyanotic heart disease, so we did not need this PDA to remain open. Basically, every part of Harper's heart is there and working properly, but she has a very large VSD (hole) that must be fixed. To give you an idea of how large this hole is, Dr. Robinson said that he considers a VSD measuring 7 mm to be a large hole. Harper's is 13 or 14 mm in size. She has a really big hole in her heart. The good news is: it's not too big. He is still very optimistic that it can be patched.
Because Harper is doing so well and not showing any negative symptoms relating to the VSD, it seems as though nothing needs to be done immediately. As long as she continues to do well over the next week or so, we will get to go home and be closely monitored in his office once or twice a week. Ideally, Harper will remain stable for several months, allowing her to grow and get stronger before we need to do the surgery to patch the hole. But if at any time she starts showing symptoms of distress, she will need to have an intermediate surgery to band the pulminary artery and relieve some of the stress on her heart until she can get big enough to have the major surgery she needs to patch the hole. I believe Dr. Robinson would like for her to be about six months old for the big surgery.
This was all very good news. It's great to hear that we could be going home much sooner than expected. It's great to hear that she may only need ONE surgery. It's great that the PDA closed on its own. It's great that the rest of her heart is perfect.
There are a few things that I'm slightly concerned about though. Dr. Robinson fully expects Harper's growth to be very, very slow. As in...she might only gain one pound in three months. That is really slow, people. We need her to grow so that she is big enough for her big surgery, so if her growth is too slow or she isn't growing at all, this may be another reason to go ahead and do the PA band so that she can get bigger for surgery. These are just things we'll have to keep a close eye on and weigh the costs vs. benefits as we go along the next few months.
Harper hasn't been eating very well on her own. She just doesn't have the suck/swallow/breath thing down yet. You might remember that Eli and Landon really struggled with that as well and it is what kept us in the NICU for so long...just waiting for it all to click for them. Hopefully this will come soon for Harper so that we don't have to stay longer than necessary in the hospital just waiting on her to eat.
Overall, Harper is doing great and we have been so blessed with more good news today. Our God is good and we give Him all the praise and glory for this sweet girl He has entrusted us with. I can't wait to share her with all of you so you can see for yourselves just how unbelievably precious she is.
Thursday, April 7, 2011
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7 comments:
Praise the Lord for all He has done for Harper and all of you. I will keep her in my prayer still. Look after yourself too Amy. God bless. Ophelia
LOL!!!!!!! who put that bow in her hair??? is it a stick on?? LOL! i LOVE it!!!
God is SO good!! So thankful to hear more good news! She is ADORABLE, Amy!! Prayers continue...
Her little bow is *adorable*! :) You're looking great, Amy! Praying your recovery goes well and that Harper grows to be big and strong!!! Blessings...bethany
All the news is astounding. You are right our God is an awesome God and his grace and mercy are shining on all of you. I ditto the comments about the bow~~past adorable. Love all of you.
She is just precious! Like you and the others have commented, God is so good! And we are so happy she is here and you all are there to help her and love on her! We truly can't wait to meet her! Prayers continue for Harper and the rest of her great big happy family!
You look great Amy! God has entrusted your little ones to a very strong and faithful mommy and daddy...your and Dustin's strength and faithfulness to God is a wonderful example for me to follow and an inspiration to me for sure. Your children are so blessed!
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