Hey everyone. You may see some of the pics and a video I am trying to upload of Sara's hiccups and wonder- how can she look so good and be so bad? According to the neurologists, all that is good about her right now, vitals and reflexes, are functioning out of the brain stem - which is not damaged. As she progresses, the top of the brain will begin to develop and take over those primitive functions and suppress them. This is normal and should happen. But that is where the damage is and there is no way to predict how normal functioning will be impaired. As early as 33-34 weeks when suck, swallow, breathe coordination begins to show we may begin to see signs. Maybe earlier if the damage is more extensive.
In her favor, she is very young and her brain is very pliable and resilient. Other parts of the brain could take up those operations for the time. On the other hand, not only is the stroke, or as they call it - infraction, a problem but the blood is also in the tissue. The doctor is very confident the blood will drain, especially with the reservoir put in. But the blood in the brain tissue is like putting a drop of water on a sugar cube. There is damage left behind when the blood is absorbed. How much? We won't know until further MRI's and CAT scans are done in the next few days and weeks.
I'll be honest, the picture painted by the dr's and nurses is very very bleak. I know they have to speak from their training and experience. But as I posted earlier, God has the final word. And this is the tension we are living in right now. To have the medical tests and facts staring you in the face, while walking with and serving a God who does the impossible. Can God heal her? Yes. Will He? Only He knows. What best will give Him glory and make His name known among the nations - I wish I knew. As one pastor friend advised me today, when the storm is the darkest, step out of the storm look to God and ask - How does it look up there?
If the tears of a mother could heal a child, Sara would never be sick for the rest of her life. Pray for Jennifer (I and a few others call her Jenny). Pray for God to give her rest, peace, hope, and comfort. Pray for God to speak very clearly to her heart and reassure her of His love and plan for all of this. Pray for our two daughters. Pray for our doctors and nurses. I know it is their job, but they don't enjoy this either. We may have some hard decisions to make in the next few days and weeks, and all the options stink. Pray God would speak clearly to us so we know that our decisions are His will - that is all we want.
All of your comments, emails, phone calls, meals, cards, prayers, and support are what give us a hope only surpassed by our God of hope. There is not much hope floating around our child in the NICU. Thanks for caring, posting, and praying.
Wednesday, June 3, 2009
Wednesday PM
Let me give you the facts now and feelings later so you can pray. We met with the neurosurgeon today - the damage to her brain is the equivalent of a 45 gunshot wound. Because she is so well physically right now and stable, their biggest concern is developmental. The prognosis isn't good. At the same time, the dr said I cannot tell you 100% what she will be like, the final decision is in the hands of God. Isn't that a good thing to know!
Tomorrow morning she is going to have a reservoir put on the brain to relieve the bleeding and over the next few weeks it will clear up the spinal fluid. Medically, not that big of a deal. In fact, the pediatric dr said the blood will go away. What is left behind when the blood is absorbed - no one knows but the Lord.
This is very heavy to carry, and our hearts are overwhelmed at all of you who are helping. We are reading the comments and we will be reading the websites sent to us. They all help. We are off to try and get a little rest. More later
Tomorrow morning she is going to have a reservoir put on the brain to relieve the bleeding and over the next few weeks it will clear up the spinal fluid. Medically, not that big of a deal. In fact, the pediatric dr said the blood will go away. What is left behind when the blood is absorbed - no one knows but the Lord.
This is very heavy to carry, and our hearts are overwhelmed at all of you who are helping. We are reading the comments and we will be reading the websites sent to us. They all help. We are off to try and get a little rest. More later
Tuesday, June 2, 2009
Heavy Hearts, but still hoping
After consulting with a neurosurgeon, our doctor determined that Sara needed a CAT scan this afternoon because the bleeding on the brain was worse. The results of that were not good. The hemorrhaging was and is serious, they may have to do a reservoir or shunt at any time. Worse, Sara has had a stroke on one side of her brain. We will meet with a neurologist tomorrow to discuss that in more detail. They do not know the consequences of that stroke other than that it is serious. They have asked us to to begin considering DNR orders if she deteriorates quickly, which is a possibility.
They actually let Jenny and I hold her this afternoon and at some point our two girls, Abigail (7) and Emma Grace (4) will get to see her.
You all have been so kind to us and supportive. Please pray that our good and loving Father in Heaven would give us wisdom beyond our years, strength to stand in Him, and faith to walk step by step and day by day. Can God turn this around instantly for His glory and our good? Yes, and we pray he would. We also pray for Him to be merciful to Sara and do what is best for her.
They actually let Jenny and I hold her this afternoon and at some point our two girls, Abigail (7) and Emma Grace (4) will get to see her.
You all have been so kind to us and supportive. Please pray that our good and loving Father in Heaven would give us wisdom beyond our years, strength to stand in Him, and faith to walk step by step and day by day. Can God turn this around instantly for His glory and our good? Yes, and we pray he would. We also pray for Him to be merciful to Sara and do what is best for her.
Monday, June 1, 2009
One week old!! New home and new valley
Sara got to move into the aquarium last night, as you'll see in the pics. I don't know why, but she seems closer and more accessible in a plastic box than in the open table she had been on. You can open the doors and rest your hand on her, and we stayed almost an hour without realizing the time. She slept well most of the time we were there, but he heard a few girggles, coos, and grunts.
Everything is going well with heart, lungs, and kidneys. Still waiting on the tummy to clear so she can get some of the goodies her mom has been working on. We have officially filled our freezer section at the hospital, so now we work on our freezer. Thank goodness we have plenty of space. If we fill ours up we may treat NICU to a buffet one night.
The biggest obstacle to Sara is they discovered blood on the brain. Her first test was negative around her 2-3rd day, but this was positive. Sounds horrible and it is serious, but thankfully God has made the brains of little babies resilient. If it were an adult it would be a big problem. One side is a grade 3 bleed, the other is a grade 4 (grade 4 is worst) and in the tissue which is more serious.
The doc says there is no way to know where this is going to go right now. It is a wait and see situation. They will watch her head and make sure it isn't collecting blood and swelling. If so, they must drain. They will watch for seizures - so far so good. They would like to do a CAT scan, but it is too much to take her downstairs right now. The CAT scan is more accurate than the ultrasound when it comes to diagnosing severity and location.
The doc says bleeding on the brain is different for every baby. The nurse practitioner says that some babies have grade 4 and are ok, some have grade 1 and aren't. So who knows but God where this will go and we trust Him wholeheartedly!! We have been so surrounded and upheld by your prayers, please continue to intercede for Sara. Pray this blood would be absorbed into the brain with no further complications. The doc and nurse practitioner said other effects of this may not show until much later down the road.
We have been told by many to expect these setbacks. It just amazes me how quickly you move your prayers from one issue to another. Last night it was meningitis, and tonight that seems so distant and insignificant. What a journey this is going to be.
Gotta hit the sack, got to leave by 7 to take our oldest to horse lessons. Looking forward to spending some Daddy daughter time with those two while mom sleeps in and rests. We almost had a scare today with her. She has an infection around her incision and at her doctor today the nurse practitioner was examining before the dr arrived and said she may admit Jennifer to put her on a antibiotic IV. Well, that was not what she wanted to hear. But the dr checked it out and it has to drain and run it's course, but she isn't worried. Will get the culture back Wed. Pray it clears up soon for Jennifer. In fact, the dr showed me how to press around the incision and squirt the fluid out of a hole in the incision. Anyone Queasy? I am not a Discovery Medical Channel person, but I did it tonight, didn't pass out, and got a little bit out. Have a good night!
Everything is going well with heart, lungs, and kidneys. Still waiting on the tummy to clear so she can get some of the goodies her mom has been working on. We have officially filled our freezer section at the hospital, so now we work on our freezer. Thank goodness we have plenty of space. If we fill ours up we may treat NICU to a buffet one night.
The biggest obstacle to Sara is they discovered blood on the brain. Her first test was negative around her 2-3rd day, but this was positive. Sounds horrible and it is serious, but thankfully God has made the brains of little babies resilient. If it were an adult it would be a big problem. One side is a grade 3 bleed, the other is a grade 4 (grade 4 is worst) and in the tissue which is more serious.
The doc says there is no way to know where this is going to go right now. It is a wait and see situation. They will watch her head and make sure it isn't collecting blood and swelling. If so, they must drain. They will watch for seizures - so far so good. They would like to do a CAT scan, but it is too much to take her downstairs right now. The CAT scan is more accurate than the ultrasound when it comes to diagnosing severity and location.
The doc says bleeding on the brain is different for every baby. The nurse practitioner says that some babies have grade 4 and are ok, some have grade 1 and aren't. So who knows but God where this will go and we trust Him wholeheartedly!! We have been so surrounded and upheld by your prayers, please continue to intercede for Sara. Pray this blood would be absorbed into the brain with no further complications. The doc and nurse practitioner said other effects of this may not show until much later down the road.
We have been told by many to expect these setbacks. It just amazes me how quickly you move your prayers from one issue to another. Last night it was meningitis, and tonight that seems so distant and insignificant. What a journey this is going to be.
Gotta hit the sack, got to leave by 7 to take our oldest to horse lessons. Looking forward to spending some Daddy daughter time with those two while mom sleeps in and rests. We almost had a scare today with her. She has an infection around her incision and at her doctor today the nurse practitioner was examining before the dr arrived and said she may admit Jennifer to put her on a antibiotic IV. Well, that was not what she wanted to hear. But the dr checked it out and it has to drain and run it's course, but she isn't worried. Will get the culture back Wed. Pray it clears up soon for Jennifer. In fact, the dr showed me how to press around the incision and squirt the fluid out of a hole in the incision. Anyone Queasy? I am not a Discovery Medical Channel person, but I did it tonight, didn't pass out, and got a little bit out. Have a good night!
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