Wow my baby will be 6 months on the 4th and It happened so soon. Most days seem to be full with driving the older 2 around or dr. visit/phone calls and some days drag on and I think "how can I keep this up?". But then I lay down and nurse Heath and well how could I do anything less? When we breastfeed my life is all about him. Tessa may be trying to jump on me or asking questions and Peter could be running around singing. I don't tune them out I try to listen to them but Heath and I always have this moment right about then the milk starts to flow that we just connect and our eyes lock and he holds my hand and I just thank him for picking me to be his mama. All the worry or stress involved with having a special needs baby goes away. I know that anytime I need a brake or a timeout that picking him up and just looking into his eyes will make me relax. I don't see the cords or have to lift the apnea bag or push his O2, he is just like any other baby in arms and I can see who he is inside. No system or O2 will ever replace that skin to skin and closeness of feeling his breaths and hart beat with my own hands and smelling his head to know WE are ok.
I feel so detached from him at times when I walk past him and he is in his chair or swing and wires all around him. I just want to put my baby in the sling on my hip and walk around my house like I did with my other 2 without the extra bag or cart. I feel sadness over this loss and tear up about it often. I want him to see the world at eye level like my other 2 enjoyed and I want the freedom to go anyplace with my kids. But our new norm is stroller (for him or his alarm bag even if I and caring him) I still have to push the O2 tank (I tried the book bag one but that was not a help then I had machines o2 and baby to carry and it was to heavy) and plug him in to charge at night. But when he nurses it is all gone and he is just like any other 6 month old when he eats especially now that we seem to have gotten past his difficulty with that.
I just returned from LLL and wow it was awesome as always but this year was something more to me. Not only did I get a chance to learn and expand on my CLC training but I meet some wonderful people. I have a feeling the last few days will shape Heaths medical care from now on and and has recharged me. I needed some validation that some other stuff I think maybe going on that the Doctors have not seemed to taken a huge note in, are going on. I now have some new places to turn for answers and decided if we can help any other baby by sharing his story more then just here on this blog then we need to tell it.
It is funny at one point the room applauded when all I did was say "I hand expressed for my baby right into his mouth when he could not latch to avoid the pump" I just could not wrap my mind around why the need to clap for that. To me it was just what I had to do, he had to eat, I had milk that had to come out and he had a willing mouth and I was just to tired to think of pumping. But what I was unable to share was "I did it for me, that time is the only time that I see him and I am only looking at his eyes and he is looking at me and I know he is ok". We have a few moments like that in the shower also when he truly has no wires on and he is just as soft as any other baby but during that time I feel rushed because his O2 is off.
I don't feel amazing, I feel tired and anxious many days by the end of the day. I don't want to do this I feel I do anything I do because I have too. That even when things are hard it is not Heath that is hard it is my guilt on how it effects the other 2 that bothers me. I follow my parenting style as I did with Peter and Tessa as closely as I can with Heath and just feel so thankful for all the support that has come my way. But through it all I have also learned who my true friends are and that you can't count on everyone but that it is ok because not everyone is made to be a support person. In the last 6 months I have also leaned that it is ok for me to sleep during the day or stay home from work. That I need the support now and I am not available to be a good peer councilor now. I still go to work and teach the classes but I recall a day I drove up to that building and wished I could get out go in that class and yell "BREASTFEED YOU BABY, IT SAVED MINE" and then walk out like that was class. I am also finding giving any sleep info hard to do after my personal Heath experience.
More then ever I have to be kind to my oldest 2 and love on them as much as ever. I have days I know I am short with one or both of them and David has to remind me to relax. That is a new role for us as it is in many ways a reversal to our past parenting rolls with each other. I can recall may days that I have said that to him and had to remind him how old they are and what is age appropriate. Peter is just a spit fire and so funny and charming. Tessa is so sneaky an clever with how she looks at life, and manages to get away with things. Both love Heath and will do anything I ask when it comes to helping me with him. But they crave my one on one attention and I have noticed much to my sadness just how attached they have become to school where they are getting it. I love my children more then anything and many days I ask myself how did I go from this time last year where Peter and Tessa where both still nursing and we all where so bonded and excited about the new baby on the way, to today. I just hope they don't feel push away and it is just him growing up that made weaning so easy, and that it was the early secure years laying the ground work that makes them both have a love and independence for school, because they trust me to return. I am dreading the summer and looking towards it at the same time.
I did not know I had some much to write about and how much was feelings and not so much a Heath update.
Some things I did become aware of for him from LLL.
Tongue tie could be one of his issues even with is length. (I had him looked at)
Lots of Vaccination info pertaining to him/older kids and a plan.
That I am not alone in thinking his left side is not working as well as his right and my gut that he has CP maybe off but that something neurological could be going on and should be looked at along with the genetics that we already said we are going to do soon, because it could be another syndrome. Based also on Peter's history and birth defects could be from the same syndrome. Now anyone that says "but Peter is fine" know not all syndromes have anything to do with intelligence and can range from mild and unnoticed-severe. It could all come back as nothing. Heath's heavy breathing still could be what is causing his other physical issues but it is better to know for early intervention.
Things I know about my kids to be true from a Mama's view.
Long tongue that always comes out curled and hart shaped and pulls towards the left.
Limited controlled use of his left arm and Left leg and they pull to his left side and seem stiff (I don't know how to enplane this better).
Left leg more then once has been suspected for clicking in the hip (U/S showed normal)
Left ear draining and smells often (like sour milk) even without and ear infection (failed the ear test many times at birth until the room had no noise and he did get a passing score)
Left eye lazy/slant/drop
Slight short chin (and recessed at birth)
Noisy nurser hard to latch (did not latch at every feeding until 4 months old)
Clubbed feet (not as bad as at birth)
Penis (low hole and only partly formed foreskin)
Ears not symmetric with right not as formed
Long tongue (he can lick his chest)
upper lip tied until he broke it when he fell as a toddler
Clicked when nursing, sores and pain for me and sucking blisters on his lips
And just because it could be related:
Tessa had a "birth injury" and her neck needed adjustments because it had no natural curve. I also just leaned my SIL and MIL have been seeing Chiropractors for the same issue as adults. My SIL also has the Left eye lazy/slant/drop. As far as the tongue my husband and I both can touch our noses and my mom could touch her brow.
And I was born with clubbed feet that had to be fixed.
I do have a few syndromes we are looking into but the internet can be scary so until we have testing I am not sharing the names of them here.
Most important is to know Heath can have more then one thing going on and not all of them have to be intertwined in any one syndrome or related but together could help us enplane how it is effecting his breathing because no matter what it is that is the big question still as to why the apnea.
Workups will all be something we will be looking in to and sooner then latter
I have also been put in contact with some references that can do that stuff if his Pedi approves it (luckily with our insurance I don't need the references but I want her involved)