Rotavirus Runaround

Just wanted to let preemie moms know that we must be extra vigalant about shots. I just took Nic to get his 6 month shots (even though he is now seven months -- a whole other story about scheduling preemies with the ped!) While we were filled with questions about the shots and other issues at the appointment, it slid by us that they were going to give him the third set in the rotavirus series of shots. He never had the first two because he was in the NICU, and at the last ped appt. the doctor told us that he didn't need them because he had missed the window for them to be effective. When I got home and reread over all the paperwork and side effects, I realized he'd gotten the third in the series of shots.

When I called the office to see what had happened, they backtracked and said the doctor had decided Nic would get a small benefit of getting only one in the series of three. Well, I could tell they were tyring to cover a mistake, but I do really like the doctor for a lot of other reasons. I hate to have to find someone else when he's been so caring and good to work with. So, I told them that I had concerns about insurance paying for it because of the unusual circumstances and they told me they would take it off my bill. But, the side effect of this shot can be vomiting and diarehea, which made me very worried. Luckily Nic didn't have any ill side effects and I can only hope getting the vaccine was benign. My husband and I felt so horrible about it and learned we have to take extra care before signing paperwork while at the doctor's office. It is so hard for preemie parents because there are often way more questions and issues to address than your average child's visit. Please learn from our mistakes, and be sure to keep your pediatrician on track.

No More ROP!

Just wanted to provide encouragement for those families out there whose preemies have been diagnosed with stage 3 ROP in one or both eyes. This was the diagnosis we were facing in the NICU. After following up every week at a doctor who was about an hour away, we finally got the great news that Nic's retina had matured and the ROP was gone. No need for laser surgery! So, if your child has been diagnosed with ROP, please check out all your options. The longer you can put off the surgery the more time the eye has to mature. There is a risk of the retina detaching, so ask your doctor what the risks might be. We feel so fortunate that Nic was able to overcome this common preemie challenge.

Now we just have to see the ENT and find out why the hearing screens keep coming back inconclusive for the left ear. We'll keep you posted!

Babies for Barack! A Cry for Change

We are excited to get Nic one of these shirts. For the future of all babies, it's important that us parents vote for Barack!
Full disclosure, these shirts are made by my mother-in-law, who is very cool. Her site is full of great items for kids. She also made the artwork for our nursery. I think it is great to support independent designers and artists.

I had heard that Sarah Palin, despite having a child with special needs, has voted in the past to get rid of funding for special needs children's programs. This is really upsetting to me. I think we all know that as a busy politician, it is highly unlikely that Palin is actually the hands-on mom that is required of parents of children with special needs. I don't mean to sound so negative, but I imagine she has all kinds of help with childcare and nursing care that most moms have to do on their own — without the public praise that Palin has garnered.

Make this outfit or button your child's "Cry for Change!"
http://www.cafepress.com/sheilaforkids.305859950

Persistence Pays

We are excited to find out that Lutheran General is going to work with us on the fees for th EEG digital readings. We'd also gotten great news this week that our son's most recent EEG test came back clear with no signs of abnormal brain activity. We are feeling very blessed, and urge other parents to keep asking questions and pushing when you feel that hospital is charging you unfairly. And, a bit of advice, the other hospital we just went to for the EEG told us that the digital readings are not accurate and that's why they don't do them. For once I have to defend the insurance companies on their decision not to pay for this kind of test. You get the feeling that hospitals just need to pay for new types of equipment and try topass the costs along to you.

Check that Expiration Date

Just a reminder out there to all those parents whose babies need formula, please check those expiration dates. I had a close call this week with some expired formula from Jewell-Osco. Nicolas has to have thickener (SimplyThick) in his Similac Neosure formula, so I've been buying the ready-made kind to save myself some time in the mixing process. For those of you who haven't dealt with this feeding issue, the thickener helps Nic swallow his formula without aspirating it into his windpipe, a problem he had while still in the NICU.

I had just poured all 32 oz. of the formula into a jug to mix with the thickener, but before I did I took time to rinse the carton and place it in the recycling. As I looked more closely at the jug, it had expired two months ago. Anyone who has dealt with formula knows the expiration dates are almost frighteningly long (many right now are 2009 and even 2010 on the one I buy.) So, this led me to believe that this formula must have been on the shelves for nearly two years. I felt terrible for being in a hurry while shopping and not checking the date on the bottle. I was so relieved I hadn't fed it to him, and also so glad that I hadn't wasted the very expensive SimplyThick on this batch of formula. Also, the store director was very nice when I called and said they will replace the carton of formula. I urged him to go check the shelves and pull any other expired bottles, as Similac's Neosure is meant for preemies who already have enough tummy and other troubles without giving them bad formula.

More on expiration dates later ...

So Much Accomplished

It's hard to believe Nic has been home for almost two months. When he was born back in February, his birth was such a shock and it seemed hard to image we'd ever get him out of his isolette, let alone into our home. He's doing great, but the scars on us as parents still remain.

As a mom, I had to learn to celebrate the fact that he was alive and had a fighting chance, but then also grieve the loss of my last trimester of pregnancy and the magical birth and bonding experience I thought Nic and I would have the day he arrived. I wasn't able to see him until the day after his birth, and it was more than a few weeks before Jeff and I could hold him. I worried that he might never bond with us or feel the secure feeling of being with his parents that most babies seem to instantly have when they enter the world. For a long time I clung to the idea that breastfeeding would be the thing that would bring us together and instantly bond us as mother and child. But, after three months of pumping and freezing breast milk, Nic was still only able to take small amounts by NG tube and medical complications forced me to stop pumping. I was crushed. We'd survived heart murmur surgery for him all the ups and downs with oxygen, apnea and bradycardias, and yet it still seemed we had so far to go. But, Nic was getting better and we'd already given him a great start. Jeff was so supportive of the pumping and transporting of milk to the NICU, and even hauled home a giant freezer for us to store the supply. Nic also began to know our voices and seemed soothed being held by us at the NICU. I started to think that things were going to be OK. I ultimately did seek the help of the therapist and medication to help me through my fears about being a good preemie parent, but now can say that Jeff and I have accomplished so much. My getting help was the right thing to do for both Jeff and Nic.

We are rewarded with the smiles we get from Nic when he wakes up in a bassinet next to our bed. We still have so many worries for Nic's future and still are making the rounds to many specialists, but are hopeful that things are going to go relatively smoothly for Nic for all he's been through. For any preemie parent who is overwhelmed by the tasks that lie ahead, or even just daunted by getting out of bed to go to the NICU another day, please know that things will get better and help is available.

Lutheran General and Advocate Digital EEG Billing

My son was born at just over 26 weeks. If your child is in an Advocate-run NICU, watch out for their practice of doing unnecessary EEGs that won't be covered by your insurance. They did four of these while he was still in the hospital without ever finding anything or having his health impacted one way or another. The problem is the digital readings they do as a spike analysis of the EEG findings. That's what our insurance company defines as experimental. They also say that it doesn't cost the hospital any extra time or money to do the digital read.

One of the EEGs was done before we'd even known it was scheduled. After the initial EEG to check and see if was related to apnea, the EEGs were all ordered by a physician who was even on site to see our son and who billed insurance for digital readings he says he knew would not be covered by insurance. In my opinion, this is just a way for Advocate Lutheran General to bill insurance companies and pad the bills of patients who have long-term stays. This hospital's customer service was anything but and they are poor advocates for these most vulnerable patients. I would strongly encourage any preemie parent to avoid Lutheran General and any Advocate facility if at all possible. We have decided to pull our business from all the specialists at Lutheran General. This is a case where parents of children in the NICU should be treated with respect and procedures performed with informed consent. The should not be license to run wild with tests just because a child is in the hospital for 101 days. Parents should be treated as valuable consumers who can shop around and find better care for their children if they need to. We are taking our insurance dollars where we know our son will get good care and good customer service.

When our son was finally out of the hospital and was referred to this pediatric neurologist for followup, he confirmed our suspicion that the digital reading was not medically necessary. But, now he denies that because the hospital's billing department has told him he needs to. We will continue to fight this on principle, not only to decrease our mounting bills but also to help other parents who shouldn't have to wage this battle while fighting for their children's' lives.