FIRST TOOTH!

Yes thats right Jonathan finally got his first tooth, the bottom middle one. He was cranky and had a slight temp. I wondered if it could be a tooth but have been telling everyone for the last eight months "I think he's getting his first tooth" but now I can really say it and in a way I am glad its here but in some way I am going to miss that famous toothless grin! Well the next day he was fine and then he started getting a fever again and it was 99.7 which is where it was when his tooth came in so nothing to worry about however a little later my parents called to say it was 100.9 o.k so I know its not a tooth and Justin and I were in Grand Rapids which is about an hour and half away. I told my parents give him some Tylenol and take his temp in about 1/2 hour. Well not good it was 101.9, so we were already on our way back and I called the peds office and it was an ear infection! So the last couple days have been whining and crying from both of us:) He is feeling much better now and I started him on his blenderized diet and we have completely taken him of prevacid which I thought was crazy since he was on a very hefty dose (21mg) but it has proven that he will puke on it or without it! Our GI still can't figure why Jonathan wants to eat but after acouple bites pukes then wants more, however he did eat mashed potatoes the other night and he drank from a real glass and did great! So we will try again slowly. His feeds are going o.k thanks to my online friend Shannon and Jonathan can down 4 ozs in 30 minutes via G tube but that means his tummy is expanding! He is still a peanut but is growing slowly the docs want him at 1000 cals a day to catch up I say yea right and to be perfectly honest every time I try to increase his calories he pukes so I believe his body is telling me that he can't handle anymore and yea he is gaining slowly but he is gaining on his own curve not what is the curve for "average" babies because we all know he is not average he is Jonathan and he is going to grow at his own pace yes he may be 2 and then hit the big 20lbs but guess what we will all be happy cause we aren't all stressed about him not getting enough calories, puking up all his calories and where can we fit an extra bottle in. I now know enough MICRO preemie parents and their kiddos are way below the "average" growth chart but every ones happy and another thing while I am still ranting I really dislike when doctors use the phrase failure to thrive because in my book Jonathan is underweight to their "average growth chart" however his hair is beautifully his skin is the softest, smoothest skin you have every felt, his head is growing his length is growing his nails grow like weeds he pees and poops regularly so how is he failing to thrive? O.k I am done with that!
Another great thing is therapy he is doing very well with his head not completely up but can manage it by that I mean he can control when his head goes down he is using his muscles to lower it and raise it where it used to just flop back! This next part is amazing! Jonathan is trying to walk yes I said walk if we stand him up while we are standing and he is in front of our legs so basically our legs support his head he will pick up his feet in the correct pattern, one leg the other leg and so on I showed the therapist and they were both blown away they said that usually doesn't happen that way! So Jonathan will be getting fit for a stander to help more of his head control. The therapist also commented on how his feet stay flat so that was good too! We are going to start therapeutic horseback riding in May and are very excited about this. The instructor will sit with Jonathan and work on his trunk. And last but definitely not least Jonathan is telling us with his eyes what he wants. The therapist suggested we take pictures of things his bottle, toys, highchair, swing, stroller, etc. and then ask him and see what he does so we have only done this, this past week but its working. I will ask him something and he responds with his eyes or he'll cry but hay I'll take anything! I didn't realize how well he really knows whats going on but his therapist Allison put a rabbit sock on his foot and she put that foot in his mouth and then out and back in and so on for about 5 minutes then asked Jonathan wheres your bunny well he lifted his foot that had the bunny and every time she asked he would show her while keeping his other foot down. So I was a little sceptic since the other foot is his weaker side so so repeated the same process with his other foot then asked him wheres your bunny and holy cow he lifted that foot while keeping his stronger one down! my kids a genius and this is what prompted the pictures and him "talking" with his eyes!I love my boy so much!

Wordless Wednesday

E.R visit x2

Wow is all I can say! This past week has been very tiring.

Since Jonathan has gotten the G tube things seem very difficult. At first on the 12th when he got the surgery of course he was in pain. It seem to subside by the 16th monday and then I started him on a blenderized diet consisting of rice milk, coconut milk, sweet potato, chicken, yogurt, flax seed oil, probiotics and pear juice everything organic! Jonathan loved this new "food" he was eating by tube. and when we went to the peds he gained 8 ozs which is really great for jr. because he doesn't usually put on weight that fast. Well on the 20th we had an appt. with the surgeon that did the g tube surgery and we told him that the area looks so red and irritated, his response is it looks irritated so lets wash the area 3 times a day and apply ointment, o.k thats not a problem! Oh ya the best news Jonathans reflux was gone completely after starting this new diet! The next week went great and then on friday night the 27th Jonathan started to reflux a bit but we weren't to concerned but on saturday Justin watched Jonathan and he threw up projectile vomit 4 times in a matter of 2 hours now we're concerned. So I called the peds office and he lost a half pound and everyone thought he was constipated so we went home put in a lovely suppository and gave Jonathan just pedialite by tube and he seemed to do o.k only two more spit up like pukes. Well Sunday was another story he started the day puking projectile but we we're able to keep some pedialite down enough for wet diapers so Sunday was just a pukey mess. Monday morning Jonathan was just in pain and crying non stop so E.R here we come, we went to Beaumont and they thought maybe it was the tube so the resident came down checked it and said he thought it looked o.k then the nurses tried to get blood from Jonathan and let me tell you when I tell a nurse that Jonathan is VERY hard to get blood from and they look at me like I'm crazy it really ticks me off! Oh and of course I was right it took them 3 pokes and all 3 bursted so the last one they were able to get enough for a CBC but even that was pushing it. Well long story short they sent us home! All day monday was a puke fest and we were all exhausted to say the least. Tuesday started out with Jonathan not being able to hold even his meds down so E.R here we go again but this time we went to the University, we got there they were very nice and sincere (our last visit was terrible and I swore we would never be back) I bursted into tears because I didn't know what was wrong with my baby. They took blood and got blood the second time they tried and was able to put in an i.v, Jonathan was very dehydrated to say the least they pumped so much pedialite in him it wasn't funny how could I let my baby get that way! We were admitted to the peds for an overnight stay and on the second day we tried a new formula because I literally scared the heck out of everyone with my blended diet! He excepted the new formula Nutgen and we were able to get him up to his continuous feed but they wanted to keep us one more night just to make sure. He did fine just a couple spit ups but that was fine. We still really don't know why he started with the puking the docs had us a bit worried it was rotovirus because of the watery poop that had the most stinkiest smell in the world but that culture came back negative. They think it could of just been a stomach bug I don't know but Jonathan is now doing good trying to put his weight back on all in all he did lose a bit over a pound which just kills me but oh well he'll put the weight back on. Why can it take just 5 days for him to lose a pound but it takes me months to lose a pound? WE did talk with a nutritionist that did inform us we should have been giving Jonathan about 5 ozs of water on top of his blended diet so I think that my little diet was to heavy on his belly, so I am giving him a break and then will start him back on it because I loved just how happy and energetic he was and the fact that his reflux was gone!




So Jonathan is definitely doing better he even wants to eat a bit more. Daddy feed him some sour cream and he just loved it and yesterday we had chinese and he just wanted more of my pineapple chicken he is so cute! He did try to bit with his gums the chicken I think he was getting tired of sucking all the juice off , he gave me a bit of a scare!

Hearing aids

Jonathan has recieved his new hearing aids! It took a little bit to convince him to keep them in but is getting better about it everyday, he likes to laugh when I put them in.
He seems to really concentrate when their in but he doesn't babble as soon as we take them out he just babbles up a storm so I think he needs to get used to them.

Jonathan loves his swing however is getting way to big for it his legs hang out but he loves to take his nap in it.
He has also showed interest in wanting his favorite monkey to share his little space next to him. I put it next to him and he just smiles and then leans his little head on him an ends up falling asleep. He's cute what can I say!

The Hits Keep Coming!

The last week was hectic.
We went to Jonathans PM&R doctor who confirmed his diagnosis of cerebral palsy she actual labeled it as a spastic quadriplegic. Meaning he is going to have a hard time with all developmental milestones. I always knew he had some form of cp but I guess when the doctor told me it really hit me hard, Justin and I were a complete mess! Who wants to hear that their child is going to have a hard time sitting, standing or walking things most parents don't even worry about. Don't get me wrong I love my little man with all my heart and am very happy to be his mommy. What scares me is the future, when he goes to school and he sees other children doing things he can't and wondering why! Sometimes I just sit and pray and ask why, why couldn't the boys just stay in a little longer, why does Jonathan have to go through this too then what keeps popping up when I am done is this.. why am I so worried am I not supposed to put all my trust and faith in him! Is GOD not the one that brought Jonathan from being profoundly deaf to slight/moderate hearing loss! Is he not the one that gave Jonathan life when on the second day of life the doctors came to my room and told me Jonathans is very sick and probably won't make it either!
So I come to this Jonathan is who he is GOD gave me him for a reason, he has a plan for him and I will love my baby the very best I can!

Now on to some other stuff!



Trying to get used to a feeding tube is not easy, Jonathan likes to grab it and pull not a very good thing so I had to come up with an idea. I put a small washcloth over it and ace bandaged it around his whole body its very interesting but it works he doesn't scream every time he hits it. The feeds were not going good but I think there getting better, we have him off all formula and he is on a blenderized diet. This consists of organic everything, coconut milk, rice milk, a fruit, a little oatmeal, some flax seed oil, probiotics, pear juice and yogurt he is tolerating it well. He has very little reflux now and he started gaining again. My mom got him to eat about an ounce from the spoon, I was ecstatic and he seemed to enjoy it too, however just as he was about to take another bite he threw it all up. We thought it was just a fluke but the next day he eagerly ate another ounce for me but then threw up so he wants to eat but for some reason he can't keep it down. So we are going to see a GI doctor just to rule anything that could be bothering him, oh ya he LOVES coke we give him maybe a straw full once in awhile(thanks Grandpa V)and he just smacks those lips for more, hes a goof but I love him!!!

Wordless Wednesday

Jonathan has now learned the boo boo face, everytime we put him down this is usually what we see! If you look closely he even has a little tear in his right eye.

Jonathan is home!

This is a picture right after surgery, notice how red and swollen his face is!


Well its done Jonathan had his g tube surgery and we are at home, but
we had a terrible exsperience. First the doctor again tried to
convince my husband and I to get the fundo and of course I said no. A
friend of mine whos son was also born at the same hospital said this
doctor did her sons hernia surgery and wanted to do a fundo on him
because of his every so slight reflux!
This is the tube that will be replaced in 6 to 8 weeks


Jonathan went back to surgery and it was quick, he had an allergic
reaction to the anastesia(sp?) his face was swollen and very red. He
did very good we got him to his room then he started with some apnic
episodes, scared the death out of the docs, nurses and the nurse
manager we tried to explain this is jonathan and when he is hurting
he does some breath holding but always comes back. Well long story
short we ended up in the NI with one of his old nurses during the
night and one durning the day, before we left peds they had him on 1
liter o2 and when we got to the ICU they pulled of his o2 and he did
fine ( it really helps when the nurses know how your kid is)satted 97
to 100 unless he fussed which was a lot he would drop to low 80s but
bring it right back up. Well his breathing episodes we think were his
reaction to morpine, I am allergic to morphine so we think maybe he
might be because he did a couple episodes but nothing like earlier in
the day. So since they didnt want to give him morphine they made him
suffer through his pain with just plain old tylenol(every 6 hours
errrr) but his nurses were excellent and it was like a family reunion during the night his old nurses just held his little hand and massaged him, (thank you NI nurses my son still loves being massaged, head, feet, hands anywhere because of
his 21 week stay and your loving care!!)
This is what I dealt with all night, my poor little man!


I had it 5am I knew Jonathan needed something else and the poor kid needed to eat he was clearly starving! So at 5 am his nurse paged the resident that finally gave in to giving Jonathan tylenol with codine and he was so mellow after that and we tried out the g tube putting only 40ccs in and he took it like a champ he fell asleep andslept for a good hour!

This is when we told Jonathan he can eat :)

We have been feeding just about 2 ounces every
2 hours and he is handling o.k he is very tired and just wants to be
held and rocked which is fine with me! Yesterday we weaned Jonathan off his medication and he has been his happy self he slept good last night and this morning was wanting more to drink (via g tube) so he is almost back to his full feeds, probably tomorrow. The G tube is a little scary you can see the stitiches which will be removed this coming friday and in 6 weeks from then he will get a button which is almost flush to the skin where this tube is about 4 inches long and very irrating he will be wearing p.js for awhile. I was hopeing to get rid of the long tube and have the button placed before our vaction but it doesn't look like it will happen, oh well. We can't wait till we can put real food into his belly, we are going to wait till he is 1 year old corrected so around mid March or we might wait till after vacation it will be nice not having him strictly on formula!
Thank you everyone that kept us in your prayers, we love you all!