We were very excited to learn that we were going to have a second child. Haley is such a blessing to us and now our family was going to grow! I did everything I was supposed to do while pregnant, I ate right, exercised - being a preschool teacher there was no choice in that! - and got plenty of rest.
In my 2nd month I had some trouble with bleeding and thought for sure that I was
going to lose this baby that I so much wanted and already loved. My doctors words of wisdom just said "put your feet up and it will go away". That didn't work and made me worry even more. Finally after a few days it did end, but I was still not at ease any longer with this pregancy. The months began to move along quickly and finally came the time for my ultrasound. Rich and I decided to take Haley ( she's 4 1/2) along with us because she was so excited about seeing her baby finally. She had hoped for a 'lil sis' so much and was quite devasted to learn that she was not going to get what she had asked Santa for! The ultrasound showed all was normal and no reasons for concern. I finally relaxed and waited for the big day of our baby boy's arrival.
I was supposed to be induced on Tuesday, but Eric decided to be right on time
and show up on his due date with 12 minutes left to spare. He got in such a hurry that he arrived in 4 hours of start to finish labor and delivery and no time for mommy to have any drugs -- OUCH! They showed him to us briefly and then took him to the warmer to do the routine things, or so I thought. I saw the nurse keep sticking her finger in his mouth, but I was so tired I didn't really think too much of it. She finally wrapped him up and let us hold him for a few minutes while she told us he had a "little problem." She explained about the cleft palate and that he was having some trouble breathing when he was on his back. She said they were going to send him to NICU and we could see him again in a few hours.
That was absolutely the longest hours of my life, giving birth and then being told that there was "a problem." Eric's doctor came in the middle of the night to examine him and then came up to us and explained Pierre Robin Sequence, although I don't think it sank in.
When we got to see him they had him on his tummy and hooked up to all kinds of things, which made me even more afraid for him. Everyone there was so wonderful and helpful I relaxed a little, but still had lots of tears. The next morning was when things began to really change in our world. We met with, what seemed like every doctor in
the hospital. They told us that he would need a tracheostomy and a feeding tube and would do so when he was four days old. It was for the best for him because he really could not breathe well when he was on his tummy, but it so hard to accept that he would have a 'trach'. The days after surgery didn't get any easier either, because we had to start learning how to care for a tracheosomy and a g-tube (gastrostomy tube). I didn't think we would ever get through it, but Rich was so strong through all of it I knew everything was going to be OK. I thank God for his strength, because I surely didn't have any left in me. Eric began to improve by the day and I felt a weight lifting off my shoulders. He was going to be OK.
The day finally came 2 weeks later when we got to take our son home, complete
with monitors, oxygen tank and many, many medical supplies. It wasn't anything like the way I had imagined, but he was finally home, and we could settle into our new roles.
Breast feeding never worked, although how I tried. I pumped for a month but the cow finally dried up. Eric had no problems changing to formula, he is such a little trooper, adapting to everything so easily and without even crying. God had truly blessed us with an angel. Haley loves her new baby so much even though he's not a girl.
I went back to work part-time after my 6 weeks were up and Rich and I were
working opposite shifts so we would be the only ones caring for Eric. Our insurance company balked at giving us nursing care after our first week home, although we desperately needed it, and the doctors even thought it was necessary! Somehow we managed to get through it. Eric kept getting colds and thick secretions from his trach, no matter what we did, and ended up back in the hospital in October, just 6 weeks after he came home. I started putting things together and realized that I had to be bringing something home with me from my job at the daycare. It was an easy decision to leave work, although I have to admit, financially it was scary. I left work the day before Thanksgiving and that seemed to do the trick. Eric made a big improvement, his secretions changed, started gaining weight, no medicines, using a bottle and hardly using his g-tube! Since I have been home 3 1/2 months he has gained 4 1/2 pounds and still going, just slowly.
We had a big scare with him in January. I was doing a trach change, which had now become routine for me, and for some reason I couldn't get it back in. I repositioned him several times and still could not make it work. I knew then that I needed help and called 911. They also had trouble and at one point Eric had quit breathing and did not have a pulse. I can not explain what a horrid feeling that is to hear someone say that about your baby that has been through so much, or any child for that matter. I had tried to stay calm because Haley was with me, but that was a bit too much for me. Eric's
parent as teacher educator showed up for her appt, luckily and kept Haley busy in another room. I called his nurse who is truly our angel and she dropped everything and was here within minutes on her day off. She calmed me down and said she would take care of Haley while Rich and I went to the hospital.
The paramedics dispatched the helicopter which landed in the middle of our street. Rich was called and made it home just in time to see Eric lifting off. All I could do was tell him how sorry I was this happened. He said the whole way home he kept praying not to pass an ambulance and had made it to our street without seeing one, but then saw the helicopter and his heart sank. The paramedics told him that they had reestablished the airway and he was breathing on his own, but needed help getting the trach back in. The nurses there had some trouble also, but were finally able to get it in and this poor baby wanted a bottle NOW! All ended well and we were released 2 hours later.
I have learned some things throughout my dealings with my special child that I think might be helpful to new parents going through this. I hope this helps and I would like to say that you are not alone. If anyone wants to talk, please feel free to email me privately, I wish this was available six months ago when this all started for me.
Hugs to all dealing with this,
Cathy Cowan - Mom to Eric Lee (PRS) and Haley (non PRS).Helpful hints
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