Friday, January 27, 2012

Thank Goodness for Neonatologists and Therapists! (by Meghan)

I’m not a person who goes to the doctor much or takes much medicine so it is insane to me that my daughters, between the three of them, had about 15 scheduled appointments this week. By the end of the week we will have seen a speech therapist, a physical therapist, a developmental therapist, a pediatrician, a GI specialist, a neonatologist, a pediatric surgeon, and an eye doctor. These babies sure are high maintenance! (Maybe this means they’ll be less maintenance-requiring as teenagers? I’m keeping my fingers crossed!)

The week started off with speech therapy for Izzy on Monday.  She had a great feeding and the therapist was pleased.  During the post feeding conversation, she made some adjustments to her feeding process and I had a chance to ask her some questions.  The biggest thing weighing on my mind at this point is the question that's been lingering since our surgery at 19 weeks: Will Miss Izzy have Cerebral Palsy? We know this is a common result of TTTS, so I mentioned my concerns to the therapist and asked her if she thought Izzy’s feeding issues could be an early indicator of CP.  She told me yes it could be a sign of CP, but it could also be many other things.  Only time would tell. For some reason, I felt very affected (I guess that’s the right word) by her response. 

Our first sign had arisen, our first indicator, that maybe our sweet little Izzy would have a long road ahead.  We keep holding on to the idea that maybe a “normal” life is in store for Izzy where she’ll read this blog and be completely surprised by all the early struggles of her life because the only sign of them would be a faded scar on her belly. After the speech appointment I was deflated a bit.  She had won so many victories to this point. She lived…again and again, through life threatening situations. Can she really have another miracle?

Today I’m on cloud 9…a big difference from Monday.  We went to the neonatologist follow-up clinic at Easter Seals.  It was a marathon day. We woke all the girls up early to eat, and loaded them all into the car with two packed diaper bags, a cooler full of feedings, 3 adults, and lots of paperwork.  When we got there, we were taken to a room where several therapists were waiting. They looked at each baby one at a time to check on their growth and development.  Afterward, each therapist gave us their assessment. Then we moved on to the next baby.  After that we had a meeting with Early Intervention to discuss which therapies the girls would be receiving.  Four and a half hours after our arrival we were finally ready to head home.

I can’t tell you how good it felt to touch base with the neonatologist and all the other therapists together. We have many appointments with specialists who give us advice on their area of expertise, but we didn’t have anyone to answer the big questions.  I knew Isabelle and Maddy needed volume increases as time went on, but how frequently, by how much, how much spit up is too much, how frequently should we be feeding them, etc.  The pediatrician told us she should be getting 20 oz a day, but gave us no direction on how to get her to increase from her current intake of 15 oz./day to 20. The speech therapist worked on her feeding and swallowing, but couldn’t tell us how frequently we should increase volume, how many hours we should let her stretch between feeds, or why she seemed to be irritated when on the NG. Our day at Easter Seals brought many answers as well as direction on where to go to get what we needed.  They suggested Izzy and Maddy see a nutritionist who will help us determine all of these calculations as they grow.  I can’t tell you what a relief that is to me.  I felt like I was making decisions a doctor or specialist should make, but we weren’t working with someone who had the expertise to do the big picture planning with me. We’re really looking forward to meeting the nutritionist soon!

In addition to that, we got lots of great news about the girls. Sophie is right on track for her adjusted age.  Her head is slightly flatter on one side so they have us doing exercises with her to help even it out.  Maddy is also on track for a 2 and a half month-er. She has the same head issue, but her major problem is the reflux.  They doubled her reflux meds, suggested she see a GI doctor and a nutritionist, and recommended re-evaluation in 3 months.

Nothing new with those two really, but then it was on to Izzy.  The team determined physically Izzy is equivalent to a three week old.  This is a 70% delay, which qualified her for Easter Seals services. Cognitively, she's right on track for her adjusted age just like the other girls. Isn't that awesome news? But wait, there's more! They don't think her physical delays or her eating issues have anything to do with Cerebal Palsey.  They saw no indications that would be early warning signs of CP at all! So, why is she so delayed with eating and developmental milestones?  The short answer is her lungs and her scar, which are both a result of surgery.

Babies at this age should have 40-60 respirations (breaths) per minute.  Izzy had about 120 every time they checked her. Can you imagine trying to eat from a bottle while leaning back and taking 120 breaths every minute?  No wonder there is an issue! Also, all of this fast breathing makes her tired, which is why sometimes she falls asleep while eating. The therapists agreed that her eating issue is actually due to her respiratory issue that resulted from the surgery.  She ended up having 4 surgeries in the first few months of her life, all of which required her to be on a ventilator.  Each time that happened her lungs were damaged more and more. 

This makes so much sense to me now.  I couldn't figure out for the longest time why she was eating well before the surgery.  She was tiny, but she was bottle feeding and doing great.  The nurses would only attempt to bottle feed her when her breathing rate was lower, which wasn't very often, but when she did eat from the bottle she did great.  I remember being surprised how easy it was to feed her even though she was so small.  Then, after the final surgery, she wouldn't even accept the bottle and we were told she was orally averted. It seems that maybe that final surgery pushed her just over the edge and we're still recovering.  The great news is the lungs regenerate themselves as babies grow so this should be a problem that gets better over time.  How much time? I don't know, but who cares? I just keep hearing it will get better...with one caveat.  They warned us again about the damage RSV would do.  It could cause irreversible lung damage for any of the babies, but especially Izzy. So far we're three months into RSV season with two more to go.  Keep your fingers crossed!

Another issue affecting Izzy more than we realized is her scar.  It's about a 4-inch line across her stomach right above her belly button.  It's healing beautifully, but as it heals the tissue around it tightens, which is restricting her movement.  When she's on her belly, she can't lift her head back because the scar is keeping her from arching her back and stretching her head back. The team at Easter Seals told us to talk to the surgeon about "scar releasing".  They think over time, as that tissue loosens, she'll have better range of motion, allowing her to do some of the things her sisters are doing now.  Again, I was thinking her lack of physical milestones could maybe be a sign of CP, but it looks like that's not the case. They saw none of the physical indications of CP.  

So, now here we are again, thinking Izzy may be in store for another miracle. The doctors were surprised she made it out of the NICU, which they reminded us when we left.  Of course we'll love and cherish her no matter what, but every parent wants their kids to have the care free, "normal" life we envision for them.  Maybe Izzy can still have that life.  Maybe we'll still have a 3-hand reel performed by the DeBauche Triplets one of these days. We'll keep hoping and praying!



  1. So happy you guys got good news! That's great! Continued prayers for you guys and especially for little Izzy!

  2. I have twins (over a year old now) who did not have special needs when they were infants and I thought (still think) that taking them to a doctor's visit is exhausting. Your blog posts really put things in perspective for me. I don't know how you find enough hours in the day to deal with all of the paperwork/bills for this many specialists visits. I'm praying for you and your sweet girls. Truly, they are all three miracles.

  3. Everytime I read this post (have done so at least 3 times since this morning) I look at Izzy's picture and tears start to flow. She looks more beautiful and healthy each time I see a picture of her. So much of what you said does make sense and is so encouraging. I can't wait to see all the girls again.

  4. I am a regular reader of your blog and am so happy all your girls are home with you now and seem to be thriving. What a blessing they are and I couldn't be happier for the great news about Izzy. I am praying for your girls by name and I hope you have a "normal" future with all your sweet gals. Blessings to you.

  5. Izzy is a tough awesome baby girl...she just needs time and a couple years of good health!! She will catch up!! Miss you sweet Izzy!!
    Nurse Linda

  6. Happy that you received good news!! We have our first developmental appointment in February and I am nervous. 15 appointments!!! I can't believe I complained about 4 in one week when mine first came home, hang in there!