33 weeks (Madison's 1st Surgery)

Madison at 31 weeks (photo taken by a nicu nurse) She is now 34 wks and 2 days!

I don't know where to begin but to share the joys and the pains of Madison's birth. Madison was born on July 6th at 1 lb and 11 ounces. She was born 3 months early at 26 weeks and 0 days. She has been doing so well and even graduated into a room with bigger babies who were on their way to recovery. On Thursday the doctor called me to let me know that Madison transferred to the old room where she will receive extra care. She's been given morphine to help with her pain. At that time the best case scenario was stomach gas pain. The worst case was NEC (Necrotizing enterocolitis). On Friday I watched Maddie's belly get huge. At this point she was receiving xrays every 4 hours. By this time she was put on the ventilator to help her breathe better. That was so disheartening because I saw her accomplish so much by graduating on the cpap and onto the low flow cannula. Even on the day of her birth she was on the ventilator for less than 24 hrs and already breathing room air on the cpap. By Friday evening Madison was moaning out of pain. On Saturday her belly was so distended, we were certain it was NEC and thankfully they treated her with 3 different kinds of antibiotics on the day of transfer to cover all grounds. Doctors have explained that even with the treatment there's only a 50% chance that the medicine would work. On Sunday evening at 10:13 pm we received a call from the nicu surgeon. I knew she had to go into surgery and that broke my heart. Immediately my husband and I rushed to the hospital and we had to sign consent forms to the surgeons and anesthesiologist. I knew there was a risk that she would not make it and they wanted me to see her one last time before she went into surgery. I felt there wasn't enough time and just wanted to hold her in my arms. It was hard to see my baby girl tubed up and covered with wires. I was just getting use to seeing her with less wires and a cannula which was very easy to hold or kangeroo her.

At 1:30 am on Monday, 9/30 the surgeon came out of OR doors and my heart was thumping hard. Was Madison alive? Is is doing ok? He finally broke the news and said she came through in the surgery but there will be a part II surgery in a few months. With Necrotizing Enterocolitis, Maddie's bowel intestines were dying (Tissue death and infection of the intestines). They removed 50% of her dead intestines. She will need at least 30% to live a social life. I was so thankful that dr's and surgeons have come together to intervene through surgery. If we waited any longer, this deadly disease would have taken her life. If there's any word any parent fears in the nicu, it's the 3 letter word NEC. NEC is a leading cause of preemie death and the mortatlity rate is 50 percent. Even with a successful surgery Maddie is still not out in the clear and the recovery process takes as soon as 2 weeks to a month, depending on the severity. During this process, Madison has stopped her feeds and will be taking nutrients intravenously. Last week Madison weighed about 3 lbs 8 ounces. She's still tiny and was doing so well on her growth process. But during this upcoming week, her weight will only be based on fluids which may not give an accurate weight count. My biggest worry is her platelets were low and she has been receiving transfusions daily. This is typical of post-op but the nicu staff would hope that in a few days she will no longer need this. She's also had a few blood transfusions. I pray and hope that God will recover her fast. This is the scariest and number one killing disease for premature babies. Even though surgeons have taken care of her acute stage, we are waiting and watching for positive progress.

It was tough to see her on Tuesday (day after surgery) because she has edema (skin swelling) and lack of movement due to the morphine drip she was on. I kept encouraging Madison that Mommy is here and she would show me that she hears by wiggling her toes and lifting her arm (even with all the wires attached). She even opened her eyes twice for a split second but she looked drowsy from the sedatives. Yesterday, there seemed to be small but a postivie progress. I counted that she opened her eyes 10x for me and seemed to be more alert than the day before. They were weaning off the morphine but I can see Maddie grimacing showing that she had to endure some pain in order to get better. She's been such a fighter! The thing that bothered me the most is that she was shaking and I brought it up to the doctors hoping there was a reason for it. My concern was that she would be affected neurologically. Dr's and nurses said this is a valid concern but they will watch her carefully. NEC itself does not cause neurological defects but depending how sick she is may... I am worried stiff as a mom and have been to the hospital daily. It has been physically, mentally, spiritually draining... I try to take a relaxing bath before I go to the hospital so Madison won't sense that mommy is stressed. Everyday I visit, I have been trying to encourage Madison through my scent, touch and sight.

It's 6:35am but I've been up since 4 am. And even though Madison stopped her feeds to give her bowel some rest for the next 2 weeks. I am diligently pumping breast milk because I know it is good for her. I've noticed a decrease in milk supply due to all the stress that's been internalized. I've been praying that God will heal Madison quickly and that she will be able to go back to the old nicu. All the nurses, doctors and staff miss her at BWH. We had to transfer to the sister hospital due to surgical procedure and currently staying at the other nicu until she becomes stable.

The hardest thing to see was her stoma. She will have this for a few months and hopefully she will heal while her healthy stool is collected in a plastic bag called an ostomy. Though this is temporary, she will have a scar forever from this surgery. I pray this will not affect her self confidence as she grows older. I'm already thinking of her teenage years. I've done so much research in the short time to ask the right questions for the doctors and surgeons. I've included a few links below in case anyone is curious about NEC. Noone knows how NEC is developed but there is treatment. Not all babies make it through this disease but there is hope. I place my hope in God and trust He will heal Madison quickly. Thank you for taking the time to read this. Please keep Madison in your prayers...

What is NEC?
A short video of another testimony of a baby who survived NEC