Interview With My Mom, Part 2

So, to continue the story of you.  The same time you got your shunt, Hanley had her first open heart surgery. I think it was the same day.  I remember they put your isolette’s side by side (before you were diagnosed with Hydro, you had ‘graduated’ to advanced NICU, but with the diagnosis and surgery you were moved back down). Before you had your shunt put in, you had a spinal tap, and you weren’t too happy about that. I got to watch and feel helpless. Also, at your birth, you had an “opening”, a deep hole at the base of your spine, but the doctors checked it out and found that it was closed and not open to the spinal cord.

You had these big HUGE eyes that never closed and the nurses said that no matter what time of day or night, they were always open, watching.

 

You with Grandpa Hanly after shunt was placed at 4 weeks.

Hanley was on the feeding tube for way longer than you – long enough that it reshaped the roof of her mouth. Neither one of you could breast-feed, and so I pumped for both. I learned the hard way that I shouldn’t fill up the whole bottle if you are only going to drink .5ml at a time. The nurses would throw out the practically full bottle. When I tried to feed you with a bottle, you would stop breathing and set off all your alarms, so I had to hold you in this strange position and ‘remind’ you to breathe. 

Because I had a vertical C-section, I was in the hospital longer than most moms.  I also was very weak from having been on bedrest for the entire pregnancy, and the C-section incision messed up my muscles, so I had to still use a wheelchair to visit you.  When I finally was released from the hospital, it was so painful to go home without my girls – like we were eliminated from the first round of the game of parenting. Your nursery at home was all set up and I hated walking by it. Luckily, my parents and my brother lived in Cheney also, and so they were able to take shifts visiting you both in the NICU, so you both were rarely alone. Finally at around 2 months, you were released from the hospital! It was so exciting, yet also more stressful because Hanley would stay in the NICU for another month.

You had many shunt malfunctions and revisions after that, and I will do my best to tell you about them. But I might get my facts confused or combined!

One malfunction was at the distal end - the end of the tubing that drains into your abdomen clogged and so the CSF backed up into your brain.

You can see the bulging on your neck 

One time you were at the pediatric ophthalmologist for a regular check up and she noticed that your optical nerves were bulging. She immediately called your neurosurgeon. We headed over to the hospital where they immediately did an MRI. The hospital called our insurance who declined to pay for the MRI. I remember walking past the neurosurgeons office while he was on the phone with the insurance company. He was yelling, “If this child goes blind, it will be your fault!!!” The nurses on duty weren’t used to doing IV’s on small children so they kept messing up, and poking you over and over. It took many tries for them to find a vein  - to the point that I screamed at them to find someone who was actually qualified – but they finally did find a vein in your ankle (and you were covered in bruises) and were able to sedate you for the MRI.  Surgery was a few hours after that.

They often had to use your ankles for IVs (one time the IV was on top of your head) but when you started walking, they had to fully cast your leg to keep the IV from being pulled out.

Hanley died at 8 months old, during her second open-heart surgery. When you had one of your revisions, we were coincidentally put in the same room that Hanley died in. That sucked, to put it mildly.

 When you were shunted at birth, it was a very small reservoir.  As you grew, that shunt could not keep up with the flow and you had to have a larger shunt put in.  I think this was when you were 3. You had the initial shunt put in, a revision due to shunt malfunction at about 1, another revision at 2, and 2 revisions at 3.  One of the revisions when you were 3 caused too much drainage and caused you to get hernias.  I remember giving you a bath and noticing these bulges in your lower abdomen! So, a few weeks after the shunt replacement, you had 2 inguinal and 1 umbilical hernia replaced.  Before you were 4 years old you had already had 6 surgeries.

Waking up after one of your surgeries (this was when I was 5 months pregnant with your brother, and the power went out)

Hospitals are a lot more accommodating now then they were 17 years ago. I slept many nights in your bed with you, or just sleeping in the upright chair. Some nights I slept in the upright chair, holding you while you slept, being careful not to pull out any tubes or wires. This was even more fun when I was trying to do this while pregnant with your brother. I think when you and Hanley were born it was during Spokane’s big ice storm. And during another hospital stay, the power went out. Luckily you were already out of surgery!  We requested that all your surgeries be at Sacred Heart (where you were born) after having one surgery at Deaconess. The reason? Sacred Heart had much better food and Thomas Hammer coffee.

I’m probably forgetting so much! See, you being my first child, I didn’t know any different. 15 doctors visits a month was normal. Having to take you to the neurosurgeon, ophthalmologist, Occupational Therapist and many other doctors was my life. 

Each time you seemed extra tired or fussy, or threw up, or had a fever meant a visit to the Neurosurgeon because we didn’t know if it was typical baby stuff or shunt malfunction. Getting strange looks because half your head was shaved and you had a huge scar and bulge on the side of your head was an everyday occurrence.

Because of all that you and Hanley went through (and what you continue to go through) makes me less sympathetic and more sympathetic towards others at the same time. I’m more understanding towards families who have children with a disability, because I can relate to some of what they are experiencing. I am less sympathetic to the mom who grovels for pity on Facebook because her baby had to get a vaccination shot and the baby cried. I don’t know, maybe that mom still needs sympathy. Just not from me.