It has been a busy week to say the least!!! With everything that is going on in the search for answers in regards to Ben's Pierre Robin, we are also trying to make things "normal" at home...especially where we are coming up to Christmas.
First off Ben has been doing well with his feeds, the NG tube was discontinued....restarted and now discontinued again. His weight is fluctuating but he isn't gaining or losing allot. The doctors hope over the next few days as the photo therapy helps with the jaundice that he will become less sleepy and be more interested in feeds. He is a Floyd boy so I am pretty sure he will sleep like his no matter what! I called mom and Harrison is asleep and as I am typing this both Ben and Daddy are enjoying a nice nap, I think that sleep is just what all my boys do and they do it well! Ben continues to do well with his special bottle and the OT woman is a dream! She arrived this morning with a second bottle for Ben so we have a spare to go home with (when ever that may be).
Consults had been arranged for this week and poor little Ben has gone through more tests than you could shake a stick at. This morning Ashley and I had a family meeting with the multidisciplinary team and started getting some answers. We were also able to ask some questions.
Ben has had a consult with Dr. Wilson from plastics. Dr. Wilson was at the meeting and explained that he will be following Ben in terms of the growth of his mandible and also be doing his cleft palate surgery by ( hopefully) late 2012. At the present time Ben is doing remarkably well at managing his airway on his own. He feels that Ben will be able to manage until his jaw grows and he develops the strength to manage his airway in a more normal fashion.
OT and the lactation consultant along with our paediatric specialist went over Ben's high nutritional needs and discussed how he is feeding and how he hopes that will continue to go well.
Cardiology was consulted and Ben had an echo of his heart this week. It was an essentially normal exam!! The gross anatomy looked good and even the more in depth stuff was fine. He will be seen in follow up, although I am not sure when, to make sure things continue on a normal path.
Opthalmology was consulted and saw Ben yesterday. This was by far the hardest thing for me to deal with. Since I have so many issues with my eyes and major eye problems run in my family I have been a nervous wreck waiting on this consult. I know what I have had to go through with my eye and my mom has had many issues/surgeries as well. I know my eye specialist is looking into autoimmune things that may be behind the issues. One of the common syndromes that can be linked to Pierre Robin is Sticklers Syndrome. Sticklers is an autoimmune problem. Anyway the paediatric opthalmolgy team arrived yesterday morning and dilated little Ben's eyes and then did their thing. It was so hard as a mother to stand there and watch them pull and poke and prod at his little eye. Lucky everything looks normal!! None of the red flags for Sticklers are present at this stage. This doesn't mean that signs or symptoms couldn't arise later on but for now things look very good!
Ben had his normal newborn hearing test. He passed with flying colours! Another good outcome.
Ben had an abdominal ultrasound yesterday but the results are not yet back.
Respiratory was also contacted since Ben's airway is so unstable. The main reason for this consult was to see if he would qualify to be immunized against RSV. Due to Ashley, Victoria and I all having asthma and poor little Harrison showing signs of asthma the respiratory consultant was able to wright a letter to authorize the free immunization. He received his first does yesterday afternoon and will receive another on January 15th.
Ashley and I were both asked if we had CPR...which obviously we have. We did need to do a "refresher" this morning with another occupational therapist and RT. This was to ensure with the discharge planner that we as Ben's parents are able to handle whatever happens.
Overall things are going well and Ben is stable enough to go to NICU 2, which is more of a step down unit. Ashley and I have managed to move to a parent room right in the NICU to be with Ben all the time. Even though his bilirubin is still up he is able to room in with us some in a special photo therapy bili bed. All this is to give us more of a sense of normal life....but honestly it has me questioning what NORMAL really is.
Everything I have known about looking after a little one is thrown out the window. Yes Ben is a normal little boy and needs all the same thing any other little boy or girl would need. However the way in which these things are accomplished are vastly different.
Feeding--Ben can't breastfeed in the normal sense of the word. He is able to latch and suck a bit but due to the palate issues I either have to express milk into his mouth or use a special external feeder to help him. Most times it is more about the skin to skin contact than true "feeding". However depending on when his surgery is and how long it takes to heal there is a hope he will get some true feeding in down the road. For now he is getting pumped milk in the special bottle. The fantastic thing about the Haberman feeder is that it is the same motion as breast feeding but instead of Ben creating the suction the bottle does it for him. Both Ashley and I are becoming more familiar with it and it feels more normal.
Sleeping--For years we have been told to put our babies BACK to bed. Ben has to be in the prone position to maintain his airway so he has to sleep that way as well. This means tummy sleeping. Trust me he can sleep with the best of them!!! This is normal for him...but not what most would consider normal I guess?
This brings us to the next issue. The drive home. Due to the fact that Ben has to be kept tummy down or on his side a regular car seat isn't going to work for him. We have been lucky enough that the NICU has a car seat educator who worked with Occupational therapy to get us a car bed. Yup that's right a car BED, and yes it looks like the things our parents had for us and brought us home in during the 60s and 70s!!! In fact I am sure the one sitting in my parents basement looks EXACTLY like the one that was given to us to use for Ben! So he can go in the car but it has to be done differently and I think most would agree not in a normal way at all.
Even diaper changes and baths have to be done slightly modified. A swaddled and side laying for a bath. As for a diaper change very brief periods on his back and frequently being moved to his side to minimize his struggle to breath.
Life isn't normal like it was before but it is becoming a new kind of normal. While the medical stuff is still scary and overwhelming, being his parents and looking after him in this modified way has become normal. I am no longer terrified to pick him up or feed him. I feel just as comfortable with him as I do with the other two....we just have a different sense of normal with him. Ben can do ANYTHING...it just might not be the way you think of it as being normal.
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