Friday, April 18, 2008

Finally Home and the NICU Again (Part 4)

Just arriving? Catch up here:

The babies went home on apnea monitors. We were just thrilled not to have to spend another night without our SWEET ANGELS! Things were going well except for the occasional squeal from one monitor or the other. Mainly due to leads coming loose, because of movement from the boys.

We had been home one week when it happened. Tiger stopped breathing. We picked him up and pinched his heel like they had showed us in the NICU. Thankfully he brought himself out of it. My husband was going to get the phone so I could call the doctor, when it happened again. This time we had to bring him back. I was praying the whole time. God, please help us, please don't let him go like this. We got him back and called for an ambulance. It would take 45 minutes. There had been a 8 car pile up on the other side of the county.

Our Tahoe had just went in the shop that am. We called my brother and he went to the school and got my sil's Camry. We loaded up and headed to the peds office. They had an ambulance waiting.

We were taken to Children's and they couldn't tell us what was wrong and did I mention they did not have a place for him available. They tried 3 times to get a spinal tap, I told them that was enough! I then called back to St. Vincent's (where they were born and in the NICU). The neonataologist said she was sending an ambulance for us.

His sat's were down to 78 and it was not looking good. Our favorite nurse Ms. D was waiting on us. She found out we were coming and stayed past her shift off the clock. She stayed with me that night. Hubby took Monkey home and came back the next morning. For 12 days we went back and forth, taking turns keeping our other baby, while visiting the one in the hospital. He was in isolation. Gowns, gloves and masks had to be worn. By the time this was over he would have had over 100 iv's in 13 different locations. They finally pinpointed the problem. He had c.diff and a large amount of it. It was basically described kind of like an organism, that has overtaken the bowel. It was caused by the antibiotics they had to use for the sepsis.

I so wanted both my babies home for Mother's Day.We finally came home the Friday before Mother's Day! What a gift. There was one little problem........he was contagious to his brother. We washed, washed and washed some more. They had to sleep apart for 4 1/2 months and everything else had to be kept separate. Things like bottles, paci's, clothes, spit up clothes and bed linens. We went through a lot of Clorox then. We still had to use gloves to change Tiger's diapers. He was on an apnea monitor for another 5 months. It was almost September when Tiger tested negative for the c. diff.

At four months Tiger had a bulge in his side. We were sent for an MRI. Thinking the worst. We were told it was probably a tumor. WRONG!!! He had curves in the spine. An "S" shape to be exact. Then he was diagnosed with a rare spinal cord abnormality right before Thanksgiving 2006. It was said the cord was coming apart and cancerous tumors would likely form on the tethers. The spinal cord was pressing against the spine and causing it to look swollen.

A few days later we got a call on a Sunday night from the doc. He had the films looked at by some other neurosurgeons at Duke. They seemed to think that Tiger had Scoliosis. It was severe and we were told that he would likely go through surgeries and braces throughout adolescence. That was hard to grasp when your other child would have a "normal" life. The more we prayed about it, we were understanding. God was not going to take our baby. It would be difficult, but we would have him!

We saw the doc the next week for more x-rays and went to the brace company for fittings. The day came and we finally picked up the brace. It was huge, it came from under his arms well over his bottom. He stayed sick and the reflux was worse, they upped his meds and nothing. So we prayed and talked to the doc. We finally took a leap of faith feeling God leading us and only put the brace on every other night or so. this helped some with the reflux, but he was so scared of it. He could not sit up or even roll over. We went through 4 braces in all. None of which he wore as recommended, due to the reflux. Each time we saw the peds othro doc the x-rays looked better and better. The doc could not believe what he was seeing. God was healing our child. At 18 months his spine was completely straight!!!! Can I get an Amen!???!!!

At 12 months Tiger had an usual growth in the roof of this mouth. We were told by the ped. dentist that he would have to have surgery to remove it, it continued to grow. At 18 months it had just "disappeared"! Amen!

Tiger was on a special formula until he was 15 months old. They were finally well enough to come off reflux meds at 14 months. They could not digest certain sugars and sodium until they were almost 17 months old.

There is no evidence of brain damage to either child. Tiger has been without oxygen three times, twice for almost 3 minutes. There is no permanent eye damage. His liver function is normal. Everything is normal!!! Praise the Lord!

At one point there was over 8 pounds difference between the boys (monkey being the heavier of the two).

At 22 months Monkey had 2 surgeries in his private area. He healed very quickly and there is little scaring. Praise the Lord!

Today they are 2 years old and thriving! Monkey is almost 26 pounds and 36 inches. Tiger is a little over 24 pounds and 36 inches.

They each see a speech therapist twice a month, as they are a little behind in that area. They sign many words and this helps me to know their needs and wants. They also see a occupational therapist 4 times a year to make sure we are up on everything.

God is so good and is EVERYTHING! We give the glory to God! Thank you sweet Lord for our precious miracles!


MyKidsMom said...

Absolutely amazing! I got chills every time you said "it disappeared." God IS very good, and you and your hubby are incredible to have gone through all this and give Him the glory for it. Honestly, I can't imagine going through this. My pregnancies are only difficult for me, which is the way every mother would rather it be. A wonderful story Marva, thanks for sharing it~

Mrs. Darling said...

Great testament to a loving and healing God.

Nikki said...

Wow! You went through a lot with your boys. God is good, isn't He?!

Southerner said...

I love to hear how God has healed. I know the boys are a blessing and you are grateful each day for them. I sure take the health of my family for granted. Thanks for the reminder!

Anonymous said...

What a wonderful post.....Thanks for sharing these many blessings...God Bless, Pam

Nico said...

My goodness you have been though so much with your precious babies. Big hugs to all of you!

chelle's winks said... have been through so much with your boys. As a mother I know that your Tiger and Monkey are worth every thing to you and very special. God is so good to us!

Leahann a.k.a Kimberly's Mommy said...

To God be the glory!!!!! He is so good. Thanks for sharing their story.