34 weeks and 5 days

Today there was no church service because everyone was at the church retreat center. My hubby and I were unable to go. We've been so involved with Maddie's healing process that I've been long overdue in getting my lil bro & sis-in-law a Congrats gift for their newborn son. We finally had a chance to go by my favorite French store to get our nephew a special gift. It was a beautiful day today with a cool breeze. And it was nice to finally have some down time and get some lunch with my hubby. We ate at the food court and soon after received a call from the nicu. My heart just stopped and said to the nurse, "is she alive?" I always get so nervous whenever they call. The nurse explained that they wanted to update us of what's going on and handed the phone to the attending doctor. When the dr. got on, she explained that Madison's ostomy has been turning white and dark which is usually not a good sign. An ostomy is a temporary opening of the wall of the intestine to allow the bowel to recover and heal. She currently has a stoma. Her intestines are placed outside temporarily and stool is collected in a plastic bag. And apparently the dr's and surgeons are watching her closely there because there seems to be an infection that is not going away. I was surprised to hear myself say that I've been researching so much on NEC that I mentioned that if needed, let's do surgery again while she is strong. I have heard babies not making it because they were too weak by the time they decided to intervene and the infection just overtook their bodies. And also, how will we ever know since prior to this surgery, there was no evidence surgery was needed. We took a chance. And thankfully we did or she would have not made it. She agreed.

My biggest fear is that they did not catch all the nec from the surgery. And that this deadly disease will overtake her. Last night coming home, I was so disheartened to see her eyes were swollen shut. I can't bear to go to the hospital. I've been there everyday rooting for her and encouraging Maddie with soothing words. Good girl! You're such a trooper! You can do this! Mommy and daddy love you and are here for you. Everyone is praying for you. After receiving that call from the hospital, my husband and I lost our appetite and we quickly left to get a gift and rushed home. There has been no desire to do anything else.

After that, I saw my husband crash onto the sofa. After I pumped milk, I soon crashed too on our bed. I just woke at 8pm and it was time to pump again. I put Maddie's laundry in the wash with tide-free detergent. And I was slowly trying to wake from a nightmare. I just remembered crying and seeing my hubby cry in the dream. I can't tell you how incredibly stressed I am. I was suppose to go to the hospital earlier today but I didn't want Madison to sense the "stress" on me. So I rested. I feel somewhat better because I was emotionally drained. But trying to find renewed sense of hope. As a parent, I never feel so helpless in my life. I wish I can heal her instantly but all I can do is rely and trust in God again.

I told my mom just recently on the phone how I felt that all of us has lacked prayer for Maddie. And that I've been trying my best to pray diligently for her. My mom agreed and realized they prayed more for me than they did for Maddie. And will do their best to keep praying. I think the reason is because we're just tired hearing the discouraging news daily... Please continue to pray for Madison as she is fightly this deadly disease. I told God last night, I still have faith as small as a mustard seed and that I plan on telling Madison all about God and the support from friends, family and new friendships I've made through this difficult journey. I will keep everyone posted. Please continue to pray that God will heal Madison from this NEC disease and that her swelling would go down. That she would signs of improvement and that her stoma/ostomy will turn normal again soon. That God will give the dr's and surgeons wisdom as they decide what to do and not make hasty or late decisions on Madison. I believe Madison will be healthy and continue to pray with FAITH.

(update from yesterday)
I wrote a brief note to the nurses that kept in touch and took care of madison for over a month (read email I sent below yesterday)... Hi Everyone! "I saw Madison today and her biggest milestone was getting off the ventilator at 11:30am. She's on the cpap on very low settings. I got to kangeroo her for the first time today at 5:30pm. Her platelets went up from 100 to 190. Almost doubled so that's good. The only major concern was that she was swelling more than she did 3 days post opt. She went into surgery on Monday and now it's already Sunday. Is it typical to see swelling this much? I guess this is a question for the dr's but we won't have a family meeting until tues morning because of the labor day weekend. Anyways, she was admitted at 1950 grams. Today she was at 2200 grams! Yesterday she was 2170 grams. And the day before 1990 grams.

I've attached photos for you to see. Let me know if you have any trouble and I'll send them individually. She's so swollen that I can see Maddie is having a hard time opening her eyes. I just called and I think all of you have met her night primary. She just told me they put her on the lasix just recently. Is this much swelling normal? The current nurse a said she doesn't forsee her being on the cpap very long because she's on such low settings but they just want to make sure her lungs don't collapse. Will keep you posted on any major milestones..."

Janet

ps- thank you for listening...See below for more info...

resource:
What are the long-term outcomes of necrotizing enterocolitis?
Approximately 50% of infants with necrotizing enterocolitis who receive nonoperative treatment have clinical resolution of their disease. They experience good recovery and are able to lead normal lives. Nevertheless, these infants often have complications such as intestinal stricture (narrowing), usually in the colon. This complication may require later corrective surgery and can occur even when medical management has been successful.

Of the newborns who undergo surgery, approximately two-thirds survive. The mortality rate is higher in infants with very low birth weights, particularly those with extensive necrosis of the bowel and overwhelming infection.

At least 10% of children who are managed surgically have gastrointestinal problems, including short-gut syndrome, fat malabsorption, or intestinal strictures. The severity of these conditions correlates with the severity of their necrotizing enterocolitis.

Although limited information is available to evaluate the neurodevelopmental implications of necrotizing enterocolitis, long-term follow-up data indicate that up to 50% of infants who survive are developmentally impaired or delayed.