Matthew has the NEC infection. It was really scary when the doctor told me that he has a really bad infection that had spread to a lot of his intestines. This of course was followed by her stating that there is a high mortality rate associated with NEC. I couldn't hold it in and just lost it in the hospital. They had been taking several x-rays of his belly all day to see if it was getting better or worse. Thank God for the last x-ray at 4:00 showing that it was not getting worse. So, it looks like Matthew has the beginning stages of the NEC infection and they are giving him three kinds of antibiotics and they will be stopping his feedings of breastmilk for a couple of weeks, maybe three or four, depending on how things go. They did put him back on the IV nutrtion, which unfortunately, will make things harder for his liver but they don't have any choice because he needs the nutrition to continue to grow and get stronger which will help him get over this infection. It is really hard to see him fussing all the time because he is hungry and he doesn't have the satisfaction of having a full stomach. Fortunately, Matthew is doing good keeping his blood pressure and his respiratory status relatively stable. They said it could be worse if his blood pressure was dropping and if he had to be intubated again. Let's just pray that he doesn't need to be reintubated, that his blood pressure and heart rate remain stable and that the doctors have caught the infection early enough that it won't cause damage to the intestines. Pray that this infection can be resolved by simply using the antibiotics and letting his intestines rest from digesting food and the drugs they put in the milk.
In addition to all this, Matthew had an abdominal ultrasound today for the GI specialist to look at his liver and gall bladder better. Without getting into a lot of details, it looks like the problem with his direct bilirubin levels can be narrowed down to the bile ducts in the liver not working. The radiologist reviewed the older scans from the hide-a-scan and this ultrasound and determined that his liver is NOT slow to excrete into the bile area and it simply isn't excreting at all. This could mean that his bile ducts are completely blocked, damaged or that he doesn't have any. So they are going to do another test on him which is similar to the hide-a-scan to check for damage in the liver, the gall bladder, and now the intestines since he has the NEC infection. This of course won't take place until he is completely over the NEC infection, but they hope this will be able to tell them more information about the bile ducts without doing invasive surgery. If this doesn't work, then they will need to do a liver biopsy to see what the problem is.
On a positive note (if you can believe there is one) the head ultrasound today showed that the abnormality in his brain is considered to be gone. There is a tiny tiny bit of it left, but they are saying it has completely resolved. In addtion to the abnormality resolving, the original grade 2 bleed that he had within the ventricles is also continuing to go away and the ventricles are less swollen, which is a really good thing.
To top off the wonderful day I had, I was reminded of the fact that Matthew has his eye appointment tomorrow, which he does not tolerate at all. I am truly scared to find out what the results are going to be and to wonder whether or not he'll need emergency eye surgery. I don't think Matthew could take the eye surgery while he is this sick, so I don't know what they are going to do if he needs it. I just continue to pray that his eyes are getting better without having any scarring and that he won't need the surgery and that his eyes will be fine.
I have shed many tears today and I am emotionally spent once again. I honestly feel like I can't keep going through this and I really want off this wild emotional roller coaster. I am at the end of my rope with all this and I am begging God to heal Matthew completely so he can be healthy enough to take home soon. I thought we were on our way to having nothing but good days from here on out, but it just goes to show that Matthew is still in a very fragile condition.
Please continue to pray for complete healing for Matthew and continue to pray for peace and strength for us to keep going through this. Thank you all very much.
Jennifer you are sure being put through many trials these days.......my heart is with you always and I will continue to pray for you, and for renewed strength to continue to walk through this.
GUIDANCE. When I saw "G," I thought of God, followed by "u" and "i." "God, "u" and "i" dance."! God, you, and I dance. This statement is what guidance means to me.
My prayer for you today is that God's blessings and mercies be upon you and your family on this day and everyday. May you abide in Him as He abides in you. Dance together with God, trusting Him to lead and to guide you through each season of your life.
I Love You Jen,
Nikki
PSALM 23
"The Lord is my shepherd, I shall not be in want. He makes me lie down in green pastures, he leads me beside quiet waters, he restores my soul. He guides me in paths of righteousness for his names's sake.
Even though I walk through the valley of the shadow of death (or hardship), I will fear no evil, for you are with me; your rod and staff, they comfort me.
You prepare a table before me in the presence of my enemies, You anoint my head with oil; my cup overflows.
Surely goodness and love will follow me all the days of my life, and I will dwell in the house of the Lord forever."
I wish we could be with you all in person. We are with you in Spirit. Love, Seth, Dawn, and Andrew
In my reading today in a book called "The Purpose Driven Life", they mentioned the following: Be patient with God and with yourself (and circumstances). One of life's frustrations is that God's timetable is rarely the same as ours. We are often in a hurry when God isn't. You may feel frustrated with the seemingly slow progress, but remember God took eighty years to prepare Moses. Great souls are grown through struggles and storms and seasons of suffering.
I know that this is difficult for you both. I wish that you did not have to endure these struggles. God is molding little Matthew one day at a time regardless of circumstances.
This next paragraph is what Jesus said to Habakkuk when he became depressed because he didn't think God was acting quickly enough: These things I plan won't happen right away. Slowly, steadily, surely, the time approaches when the vision will be fulfilled. If it seems slow, do not despair, for these things will surely come to pass. Just be patient. They will not be overdue a single day.
I know this is not much comfort reading when you are in the middle of a stressful situation. Stay focused on God and he will fill your heart with joy. Please let me know if you need anything.
Love
Anita Bates