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One Year From Now

Life with a preemie #21

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When reality hits...

Apparently I have been living in a bit of denial since bringing Timothy home. Well, at least since February when he was no longer on oxygen and an apnea monitor. It's so easy to forget that he was a preemie when you look at him. He weighs nearly 14 pounds, eats well, sleeps well. He's just a regular baby, if you forget that he's actually nearly 8 months old instead of 4 months corrected age. When I look at him and watch him I see him doing normal baby things. Or so I thought.

Today Timothy had a big evaluation at the High Risk Infant Unit of Children's Hospital of Central California. It's designed to monitor babies that are at risk, such as a preemie like Timothy. He was evaluated by a developmental specialist, as well as pediatric nurse practitioner. I wasn't concerned about his overall health, I was more interested in his development. It turns out that his development is not as normal as I had thought. He was evaluated as a four month old but wasn't able to achieve all the milestones of a four month old. I won't go into all the specifics but because of the way they score it he is considered borderline delayed in gross and fine motor development and cognitive development. It has been recommended that we get him into an early intervention program so that he can be monitored more closely and we can be taught specific exercises to use with him that will help him develop in the areas that he is currently deficient.

 

It is possible that he will quickly overcome and be more in the normal range. It is also possible that he will never achieve normal. It is far too early to tell. Before I started writing this I was feeling rather sorry for myself. Thoughts such as - "I don't want one of my children to have special needs. I don't have time for this. How am I going to manage extra appointments with the other kids?" - were all going through my mind. Now that my writing therapy has had a chance to work I'm thinking a bit less selfishly. The outcome of Timothy's birth could have been much different. More for my benefit than yours I'd like to list some of the miracles that I've already seen.

 

  • After my waters broke at 23 weeks I stayed pregnant another 15 days which saved Timothy's life. As a result I was able to get a full round of steroids which helped his lungs develop more quickly.
  • Timothy contracted pneumonia at 2 weeks old and was put on a ventilator, but he was completely healed of the pneumonia and does not have chronic lung disease.
  • Despite being on oxygen for the first four months of his life, he has no retinopathy of prematurity (ROP) and his vision is mostly perfect. Many preemies who are on oxygen suffer from ROP which means the retina starts to pull away from the eye, causing vision problems.
  • Timothy was born with a Grade 1 brain bleed, which is the lowest grade, and by the time he was discharged it was resolving on its own.
  • He didn't get sick all winter, except for a couple days of serious sniffles. He has never been rehospitalized.

Our little boy smiles, watches us, calms when we sing to him, recognizes his Daddy's voice, listens to his sister read to him, and watches his brother play Wii. I had the privilege of watching a good friend give him his bottle last Friday night. She almost didn't want to let him go. She had seen him in the hospital when he was just a tiny little thing and she has prayed faithfully for him so to hold him, all 13 pounds of him, while he drank 6oz of milk was just about a miracle too. I remember when I was asking for prayer to be able to pump 5ml of milk which was all he got all day. He now drinks more than 180ml every four hours. Miracles indeed.

For some reason, the lyrics to Lynn Anderson's 1970 hit keep going through my head "I never promised you a rose garden..." God has never promised me that life will be easy so I don't know why I'm surprised when things aren't all peachy. What's important is that I remember the goal:

Phil 2:14-16 "Do everything without grumbling or arguing, 15 so that you may become blameless and pure, “children of God without fault in a warped and crooked generation.”[c] Then you will shine among them like stars in the sky 16 as you hold firmly to the word of life. And then I will be able to boast on the day of Christ that I did not run or labor in vain.

To the Glory of God.

 

 

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