We made it home, I will need to get back to filling in more details about the NICU and my small breakdown toward the end of that long and exhausting adventure, but I want to get to present day, but first, we were discharged! We were actually leaving the hospital with our girls. No more driving up there first thing in the morning and staying all day until heading home for a late dinner and another night of waking up to pump every 3 hours… No, we were being discharged. It was exciting and scary all at once. We were going home with monitors to keep an eye on their heart rates and alert us of any bradycardias. Thankfully, the only time the monitors went off appeared to be due to a connection issue and we ditched those after being home for about a month. But that first day, we didn’t even know what to do! We got home and looked at each other and thought, now what? So we put each girl in a swing and sat and stared…. we wound up doing that quite a bit. I still pumped every three hours, not really sure or confident that breastfeeding them was enough.

I must say, this is my main point of contention with the doctors in the NICU. I wanted to breastfeed, they said yes, but, we need to supplement to give the girls extra calories and help them gain weight, so we pumped and bottle fed the girls. Supplementing makes sense when you are trying to get a 1lb 13oz baby up to a normal birth weight, but then why were we sent home with instructions to continue adding this formula supplement. At that point in time, they weighed what a newborn would weigh and were the age of a newborn?! This didn’t make sense to me and thankfully our pediatrician agreed.

Go ahead and stop supplementing and if they have gained weight in a week, you are good!

So we did just that and stopped supplementing but I still pumped and we mostly bottle fed. Eventually, but after a long time,we transitioned to mostly breastfeeding and less bottles, but that is one thing I wish I had figured out earlier and not been so scared that they wouldn’t get enough to eat. The NICU kinda puts the fear of God in you and you follow their directions, but perhaps in my case, almost to a fault. There is a checklist of things that need to happen before discharge, one of which is all feeds by mouth, but that really means bottle. They want to see the babies finish all of their feeds and the easiest way to do that is via bottle, plus let’s not forget the supplementing.  Even though they had lactation support and showed me how to breastfeed, they didn’t really let me breastfeed or I didn’t know how to push for it, and in turn I wasn’t sure how to feed the girls when we got home. I was worried that if I just tried to breastfeed them and not give them a bottle, that they wouldn’t get enough and gaining weight was still very important.  So I pumped and kind of breastfeed and I continued to pump for almost 2 years, three months while they were still in the hospital and then another 1 3/4 after they came home! Crazy, long time but I knew that the my milk was the best thing for my girls so I kept on keeping on.

Ava folding her hands while eating

Nap time

After discharge we had several follow up appointments scheduled with different specialists. Both girls would need to be seen by a developmental pediatrician, being premature, they are at risk for developmental delays, so this doctor would keep an eye on their progress and call out anything of concern. They both had umbilical hernias that needed to be looked, we called Liv’s the elephant seal, since it looked like one of their noses! Liv also had an inguinal hernia that needed to be repaired surgically so that was scheduled for the end of November.

Ava was diagnosed with a mild pulmonary valve stenosis that needed to be monitored by a cardiologist. Thankfully, after one year of monitoring, he gave us the all clear and said we don’t even needs to include it in her medical history! One less thing to worry about. They both also needed to be seen by a pediatric ophthalmologist to check their eyes one more time. The developmental pediatrician was aware of Ava’s PVL diagnosis but wasn’t concerned or too quick to rush to any additional diagnoses so we just continued with our appointments, visited a pulmonologist each month for RSV shots and stayed home with the girls to avoid the dreaded cold and flu season.

It wasn’t until we reached out to one of our NICU nurses to see if she could watch the girls for a few hours that things changed for Ava. She suggested that we get her into physical therapy, so we did that. We called our pediatrician and asked for a referral for PT and we started seeing our wonderful Wendy. She was actually the PT that made rounds to see us in the NICU and she was now Ava’s PT. With the possibility of a CP diagnosis, we were just trying to stay on top of her milestones and physical abilities. Wendy evaluated her and we received a report of where she falls as compared to her peers. She was about 3-4 months behind her sister, but that was okay. She will get there and we will do our best to give her every opportunity to be the best she can be. Every year, the PT does an evaluation and maps out where her current skills are and where they are not. I don’t like reading these evaluations, I don’t like seeing that she is only at a certain level for one skill and another level for another, all of which are not where she should be. I don’t choose to concentrate on what she can’t do yet, but what she can do and how far she has come and how much stronger and smarter she gets every single day.

I found an alternative therapy called the Anat Baniel Method, so we started doing that too. Unfortunately, this is not covered by insurance so we shelled out of pocket for those sessions. We added occupational therapy to our busy week and eventually we were referred to a neurologist at the end of December 2016. That is where Ava received her diagnosis, spastic diplegic cerebral palsy. This means it mostly affects her lower limbs, but she does have some differences in her arms and hands just not as much as her legs. So there we were, we weren’t part of the”it won’t cause any problems” group, but we are blessed. Blessed with two beautiful girls and the determination to give Ava every opportunity we can to lead her fullest life. Blessed because it could have been much worse, cerebral palsy is broad term diagnosis that affects a person’s ability to move and maintain posture. It could present itself in a slight limp for one affected person to another being wheelchair bound, non-verbal and tube fed. If what it means for Ava is that she may need a wheelchair and may or may not walk independently, we will be thankful that that is all it means.

We have continued with all of her therapies since she was about 8 months old. We recently added hippotherapy (physical therapy on a horse) but that is another out of pocket expense so we are spacing it out and it is winter now, as it can be a little too chilly out there for horseback riding. She definitely keeps us busy. Michael was out of work and trying to pursue a real estate license when our nanny let us know she was moving out of state. So we decided that he would take over at home with the girls. We couldn’t afford another nanny on only one salary so it just made sense. Plus, one of us needs to get Ava to and from some sort of therapy appointment Monday through Friday, this would be difficult to do if we both worked a 9 to 5. He is such a great Daddy. I know everyone says this about their husbands but he truly is. So strong and handling our new life with grace and making sure we do everything we can to give Ava and Liv the best life. He makes them laugh, makes sure we have healthy home cooked meals and fills our house with love.