Did you read Shelloy’s post last week? This is part two of the miracle that is her son. Grab a tissue….you are going to need it! ~ Andrea
January 7, 2004 – 10:38am – 2 lbs 6 oz – 14 3/4 in long
I was not able to see him until just after 8pm that night due to my recovery after having a c-section and them having to stabilize him. I was able to see a picture of him that the staff took with a Polaroid camera. I have never seen anyone so amazing in all my life. He was hooked to several wires and tubes…IV’s, the ventilator, feeding tube, etc. It was heartbreaking but at the same time I could not have been happier. How much would he suffer going forward, would he even survive…those were questions I posed in my head regularly but at the same time, I had confidence that with our love and support that he could make it through anything, after all he proved…3rd times a charm!
I stayed in the hospital for a few days due to having surgery, which was also nice for me since he was just down the hallway. When it was time for me to go home…let’s just say I was less than impressed. A mom should NEVER have to leave the hospital without her baby. I bawled the whole way home and even though I was in a lot of pain, I cleaned myself up and right back to the hospital I went. I spent just about every waking hour at the hospital for my 6 week maternity leave. I could have taken longer but by that point I desperately needed some normalcy in my life and really wanted to start earning paid time off at work so I could take some time off with him when he was finally able to come home.
The next few months proved to be a trying time for our family/friends and the battle of a lifetime for Potato. He went through several procedures and surgeries over the course of his stay and also scared us deeply a few times. Below are the major procedures he went through.
- Laser eye surgery for Retinopathy of Prematurity
- Retinopathy of prematurity (ROP) is abnormal blood vessel development in the retina of the eye in a premature infant
- To learn more on ROP – http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0002585/
- Surgery on his wrist due to a staph infection
- VP (ventriculoperitoneal) Shunt placement due to hydrocephalus (water on the brain)
- To learn more about Hydrocephalus – http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0002538/
- To learn more about VP Shunt – http://www.nlm.nih.gov/medlineplus/ency/article/003019.htm
- Prior to his shunt placement he had to endure spinal taps almost daily to relive the pressure in his brain.
- Renal Agenesis (I’ve always thought it was Aplastic Kidney…lovely)
- Renal Agenesis is a medical condition in which one (unilateral) or both (bilateral) fetal kidneys fail to develop. His right kidney did not develop in utero.
- Acute Renal Failure
- When he was 4 days old his left kidney shut down causing his body to fill with fluid. He turned the most horrible shade of blue I’ve ever seen.
- He was put on peritoneal dialysis and we were at one point told it will not work forever and we should start thinking about what was best for him. REALLY??? How dare someone tell me that I have to make a decision about my son’s life? My husband and I were on the same page in that we made the decision to NOT make the decision. If he was ready to let go, he would let go but as long as he was willing to fight…we were going to fight right alongside him.
- To learn more about Peritoneal Dialysis – http://en.wikipedia.org/wiki/Peritoneal_dialysis
- My son was on dialysis for almost two weeks when it stopped working on Saturday night…Monday morning, his one kidney kicked in like a champ. I had never been sooo happy to see pee in my whole life.
- He was on the ventilator for about a month as he could not breathe on his own; once off of the vent, he was on oxygen.
The first time I held my precious boy was just long enough for the staff to change his bedding but it was the most amazing experience ever. I was holding my son, the little boy that made my whole being complete. He was so light and fragile. It was on rare occasion that we were even ok to touch him due to his skin being so fragile so actually holding him was amazing.
His stay in the NICU (neonatal intensive care unit) was full of ups and downs but we had such an amazing support system that they helped us stay strong for him. I spent just about every waking hour at the hospital. The nurses regularly told me I need to go home and rest as I was healing from surgery. Yeah right…and miss something…no way! I was like a child that did not want to go to sleep for fear something would happen…either good or otherwise.
Once he was off the dialysis we were able to hold him for small amounts of time. The most amazing moment was cradling my little boy and looking him the eyes and feeling that unconditional love that this awesome human being had for me and realizing what having a full heart truly felt like. I felt that he was counting on me to stay strong and I was not about to let him down. While we had scary moments, I did my best to maintain a positive attitude and to always be in a good mood when I was with him. Never wanted (and still don’t) for him to ever feel like a burden or that the things that we had/have to do for him are bothersome. Even smiling and singing to him when changing his poopy diapers. My hubby and I always said (and still do say) it’s a blessing to be able to change his butt. Think about it…what’s the alternative? Every moment with our kids is a blessing when you think of the alternative, even when they are being rotten.
He was finally able to get off the ventilator after about a month and he then was on oxygen. It was much nicer to hold him without the fear of catching his vent on something and it coming out. He was gaining weight from the breast milk I was able to pump. Sadly I was not able to pump as long as I’d hoped. The stress of the ups and downs made it hard for me to take the time to pump regularly so I eventually dried up. He was able to get a good amount though and I know I did the best I could with the circumstances I was in.
The waiting game for him to gain enough weight and be strong enough to come home was very draining. There were many times that I sat in the rocking chair talking to him, reading him a book, listening to music with him where I thought…I can’t wait to do this at home. There were three different nurseries in the NICU, Nursery A – where he was initially, Nursery B – where the babies go when they get a bit stronger and don’t need the constant care and monitoring, and Nursery C – which is where the babies that are pretty much ready to go home stay. He never made it to Nursery C but only because they did not have enough babies to warrant moving him out of B. When he moved to B, I was thrilled. We had more space, more freedom, it was so awesome. I remember giving him a bath for the first time..he was so little. He really enjoyed his “spa day”. It became something the nurses waited to do when I was there because that was something very hands on that I wanted to be a part of. I got to where I changed every diaper when I was there, I silenced the alarms of his monitors when I knew they were going off because we were playing too much and he kicked one loose. We got to know those monitors way too well. To this day the sound of a medical monitor goes off and I immediately check to see if there is a good “wave”. LOL
The one thing I had asked him over the 117 days was to please come home by Mother’s Day as his first gift to me. Mother’s Day was May 9 in 2004. After enduring several tests, surgeries, and just simply fighting to survive, we got to take him home on May 3rd, 2004. My prayers had been answered. Our little boy was coming home!