Reflections

Andy's birthday is around the corner. This is a milestone that I don't take for granted. 

A lot of parents spend the day their child is born celebrating. It's a joyous time filled with visitors, and pictures. Or at least lots of baby cuddles. 

I didn't. I spent it in tears fearing for my baby's life. I know I'm not alone, I know that countless others had similar NICU experiences. But what about the ones who carried a full term healthy baby and then the birth is where things became complicated? And then that baby was transferred to another hospital without you?  I haven't found them yet. It could be a lack of searching on my part. A deep self conscious part of my existence that savors just one experience that's all for me. What if I found another mom who went through what I did? What if she handles it "better" than me? 

 

I'm overwhelmed with jealousy of others who had an experience where they were never separated from their baby. This all leads me to the conclusion I cannot do it again myself until I can be genuinely happy. How can I be happy for myself if I'm not happy for the mother next to me? 

This is not to say I haven't made progress in the last year. I can talk about it now, I can ask other mother's about their experiences without blurting out spiteful, argumentative comments. 

I like to think I will get there. 

My perfect baby boy

 This is the hardest story to tell, but I know it like the back of my hand. 
After having two friends ask me today what Andy's medical issues are, I felt it was time to write it out.

Andy was born limp, due to being deprived of oxygen during a prolonged labor. Within 2 hour of birth he had a seizure and was transferred to Bellevue because they could do a cold cap. Andy did not qualify for the cold cap procedure. An MRI scan showed mild to moderate damage to his posterior internal capsule, which is a portion of the brain that runs through the basil ganglia. The EEG scan confirmed the seizure, but with where the activity was located it did not correlate with the brain damage. They do not know the cause of the seizures. The next day he had another seizure, and they began the narcotic Phenobarbital. They then did a 3 day video EEG where he was attached to the EEG for 72 hours. While on the medication there was no activity. A week later when the medicine wore off, they did an EEG and saw seizure activity in the brain that had not had the time to manifest into a physical seizure. He was placed back on the medication but in a lower therapeutic range. The initial dosage had him asleep for the first 10 days of his life. He was in the NICU a total of 16 days. The last 6 days had been due to him being too tired to wake for feedings from the medication and needed a feeding tube.

 He is still perfect, and he has just started mimicking the sounds that I make.

Formula = pharmaceutical companies

You plan on your entire pregnancy to breast feed. It's in your heart, you've attended breast feeding classes. Then at birth your child is rushed to the NICU. He/She is too weak to breast feed. So you pump. You pump and pump but not enough milk is dropping fast enough, and your precious breast feeding dream gets delayed. The baby needs formula.

What formula is given? Similac Advanced.

Now the question is why?

My battle with Similac started when I was pregnant. It's very close to the same war I've had with Enfamil. One day I received full size containers of formula in the mail. I did not sign up for them and had intended on breast milk only.

Any mother who has breast fed knows that it's hard. And what could possibly be more tempting at 4am when you've had no sleep, your baby is starving and no end is in sight? That container of formula you tried to forget that you have.

My baby was transfered to a NICU away from the hospital I gave birth at, so I went home as quickly as possible. I used a manual pump until my electric came in the mail. I would rush everyday to the NICU, first walking, then the subway, then more walking. I walked 2 miles everyday from day 2 of postpartum onward. I had my breast milk on ice in a bag. It was a race to the hospital to make it before the first feeding of the day after yesterdays supply would run out. I was barely making enough to cover all of his feedings and the amount going into the feeding tube continued to increase with no increase in my supply.

On day 2 of rushing my milk to the hospital, I go into the pumping room to make more and leave my milk, defrosting, on the shelf next to my son. I walk back in to see a nurse bringing a 6 pack of Similac Advanced to give him. She used the excuse that he needed to eat right then. Why would nurses prefer to give a NICU baby formula over breast milk?

Towards the end of his stay, on day 14, I heard a neurologist speak to the mother of the other baby in the room who was also there due to seizures. She asked the mother formula or breast milk? The mother said formula. The neurologist PRAISED her. Because the formula can be measured, it is more nutritious for the baby. This was a very personal insult for myself. I was exhausted from pumping every 2 to 3 hours round the clock to produce, but here was this doctor saying that breast milk is second best? Why did studies show that babies in the NICU who receive breast milk recover better? Why is it proven that any baby who receives breast milk for any period of time is less ill?

My quest for answers continued on.

Later that afternoon I was sitting in the lobby area of the NICU with my husband, finishing up our lunch. One of the receptionists noticed that magazines had been left on the coffee table and she told her coworker that magazine were not allowed. Why not? Because they might have formula advertisements and they wanted to encourage breastfeeding. My heart was put at ease. The coworker flipped through the pages, and noticed a formula advertisement. The receptionist stated that because it was a similac advertisement it was allowed since it is the ONLY formula on the market that does not cause colic.

I'm speachless. How is Similac any different than pharmaceutical brands? I don't think it's any different at all.

My son uses the generic and his pediatrician says they're all the same.

Enough said.