Wordless Wednesday

Jonathan loves clifford, Thanks aunt Cheryl, uncle Mark, David and Suzie!!!

Making great progress!!

Jonathan is doing very well! He just got weighed today and he is 14lbs 7 ozs that was music to my ears:) I think this time he really is teething he is drooling, crabby and not wanting to eat much. His hands are in his mouth a lot more, he is making great progress in therapy, I love our therapist Allison she is really caring and she just lent us a chair called called tumble forms its great its foam and we put Jonathan in it we can position it so it lays back and he has to do very little with his muscles or we can bring it up more and he has to really work on his neck muscles! I would say two months ago Jonathan couldn't hold his head up but now that he is putting on the weight and sleeping he holds it up for awhile he even will play with his toys. He is really getting the hang of putting his toys to his mouth and hands into his mouth, he still exercises extensor tone which makes it difficult for him to control his arms and hands but with therapy he has really come along! We had a difficult morning with p.t because Jonathan was really stiff even after his medication and it was affecting his right arm which is very unusual it usually his left, however he is now looking to the left all the time where he was looking to the right.? We don't know what to think it really seems like he is doing this mentally because its when he is having a tantrum or he is not getting his way he will stiffen which ever muscle we're trying to work on and if we give in he is fine(sometimes)! Its very confusing to us and therapists. If he had head control he would be crawling we put him on his belly and he gets his own legs by himself under him and moves across the carpet with his head dragging its not very far he goes because he doesn't get that he has to bring his arms back up but once he gets that head up I bet he starts crawling real soon! His head is growing again which is a relief it is now 43 1/2 cm and we think he is about 28 inches.



Jonathan is going to Cincinnati feeding clinic on Feb. 3rd. This is probably the hardest thing ever to deal with a child that won't eat! Its very strange that he used to eat about 20 ozs from bottle and eat 4ozs baby food and now its almost all by ng tube he doesn't even want to suck on the bottle, its completely frustrating I tried baby food and he took a couple bites, he doesn't want his cereal anymore however we went to Mcdonalds and he sucked all the potato and grease off 3 french fries so he has the suck down he just doesn't want baby food or milk, he has gotten so clever as to when he sees the tube we feed him in he cries, turns blue but you know he is hungry because he eats ever 2 hours he just doesn't like milk, is there flavoring I could add? is he old enough for pedisure they make flavors? He did eat about an ounces of gerber blueberries and pear dessert today and he seemed o.k with that. I believe its a behavioral thing because he sucks just not on the bottle and he eats (not enough) foods he likes o.k so only fries he can't live on that or can he? I did find a hopefully wonderful thing called benecalorie its only available online its made by nestle nutrition, it main purpose is to add calories to food to people having a hard time gaining weight and not eating enough to gain the weight. I was reading an email from an Australian woman who used it for her preemie 28 weeker and she gave it to him at his two night feeds because she didn't want him to feel full during the day and not eat by mouth, it worked! She claimed it was tasteless and it had no volume so it wasn't was hard on his belly, and she could mix it with everything and the consistency was no change to the food or formula. So its pricey but it will be so worth it it comes in 1.5oz cups and it boosts 330 calories thats 7 calories per cc!!!!! It also packs in protein. We will start slow but hopefully this will work!

Christmas is just around the corner I still have no ideas on what to get my hubby, I don't talk about him much but he is wonderful, he works hard so I can stay home with Jonathan and we live in a beautiful home in a great subdivision, I have the greatest parents around they have helped me so much my dad wad letting me get sleep when Jonathan was having a real hard time with his pain, I love my husband and my parents so much, i have no idea what i would have done without them!

Thankful for our miracle!

Our thanksgiving was small with our immediate families but it was such a blessing to all be together at home!

Jonathan has so much phlegm, its probably whats left of the pneumonia his o2 sat was 97 but he is not eating his 30 ozs hes down about 25 ozs but he is starting to pick up again. We are trying different foods he seems to like yogurt mixed with his cereal and we just tried vanilla pudding and he LOVES it (thanks Jamie)!! We are planning to go to Cincinnati feeding clinic they just called today and I need to set up an appointment, its outpatient so that's nice not to have to be stuck in a hospital! I just want to get rid of this tube he hates it I hate it everybody hates it but we have to keep him pumped, he is 14 lbs now he actually has some meat on those thighs:)

The greatest news we have is that Jonathan is now the happiest baby around no more crying all day, hes taking a 2 hour nap (usually) and sleeping 8 to 10 hours at night!!!! He is excelling at therapy now too! We can put him in a bumbo seat and he trys so hard to keep that noggin up and he does for about a minute then it falls but he is able to pick it back up, its so great, he is now really reaching for things not really a smooth reach its kind of jerky but he is reaching, we can put him on his side and he will roll to his back, and big news he is babbling, cooing and he actually has a great voice we never really heard before it but its starting to get pretty loud. He really showed us today when we put him in the tub he was squealing and babbling, smiling up a storm. We had our first speech evaluation at the university and she was really impressed, he wasn't doing much babbling but she sang to him, made noises then all of a sudden he just started right up babbling right back then she was going to hold him and it really I am not even joking it sounded like mama (to us it was more a whining ma ma) I told her of course I thought I have heard it a couple times but I just really want to hear it so maybe I was just making myself hear what sounds like mama, but then my family has said something but still I couldn't believe it but when we were both sitting there it really sounded like it, it was great!!! She wants us to get another ABR test before getting hearing aides because theres a small chance he doesn't need them (praise GOD)!!!!! He is just taking off like no other his muscles are still tight and he really has a hard time getting something in his mouth but thats what we're working on and since I have the greatest team working with him nothing can stop him! He is on a muscle relaxer and since we put him on that he is just so much happier! The PM&R (physical medicine and rehabilitation)doctor said why he was crying day and night and not sleeping was the fact that his muscles were tight everywhere from neck to legs the analogy she gave us was it would be like us getting a stiff neck but we would have the tightness from head to toe, everytime he would go to sleep his muscles would relax but then he would move and the tightness would flare up making him wake up and just cry because of the pain! She thinks why it just happened in July, august was he had a growth spurt and his bones grew but his muscles didn't and thats why all the stiffness and pain, I still believe some of his regression is because of vaccines but thats a whole other post to be written!I am just happy he is doing better and advancing.

We seen the eye doctor and his farsightedness has improved so still no need for glasses, but if he does end up needing them its not from being a preemie its cause of me, I wear contacts and have had glasses since I was about 5yrs old! He said babies should have farsightedness over nearsightedness it was just his farsightedness was very high but its good to hear its improved. All the doctors we see just love how he uses both eyes equally and tracks everything he is a very curious boy!

We had a chromosome test and a metabolic test done to see if the feeding and milestone regression was due to something genetically and both came back normal! Like I said I still believe it was vaccinations and yesterday was his one year well baby and we requested not to get his vaccines we still want to think about it! I will write more on the basis of why I think he regressed but until then...

Well every test can be done, everyone can guess but there is only one person who knows the capabilities Jonathan holds and what his future will bring, I just praise God everyday I wake up and see a happy baby boy! I believe Jonathan is and will continue to just be a testimony of our great and heavenly father!!

Thanks uncle dave and aunt carole!

Jonathan received a great gift from his Aunt and Uncle from Virginia, he loves to look at the pictures of his new books and since I LOVE curious George I love reading it to him but as the picture shows he sometimes reads it to me:).
he also got 2 great p.j's (monkeys) Jonathan is definitely my little monkey! Enjoy the pictures!

THANKS Uncle Dave and Aunt Carole we really hope to see you guys in March!!!

Happy 1st Birthday!!!

Wow I can't believe it, Jonathan is one!! It feels like yesterday I gave birth to two beautiful boys, I can remember everything and the doctors told me I wouldn't remember the day yea right! I remember it was thanksgiving day all was quite in the hospital where I was the last 3 weeks 2days. My family was on their way up and the nurses put a room across from mine together so we all could go in there and have a nice dinner the nurse wanted to check the boys so I would have no disturbances while my family was there. As Rita was checking the heart rates Jonathans bpm were high, she said not to worry but they wanted to start an i.v just in case, I called Justin crying knowing it was far to soon to have these babies. THey checked my temp. and I was fine then they transferred my to labor and delivery so I could be watched more closely, then all of a sudden I felt this urge to push there was so much pressure, I knew I was going to deliver my o.b came in and she checked position and Jonathan was breech she tried to manipulate him but it wasn't going to happen the nurses again checked my temp. and after only 25 minutes I was at about 101 they had to get the boys because of the risk to me of getting an infection. They wheeled me to the room and thats where it all started I cried the whole time I heard Prestons weak cry and then nothing came from Jonathan they let me peek at Preston but whisked Jonathan away, it felt like a dream and I wanted to wake up! I went downstairs to the n.i.c.u where Preston was in critical condition I held him I cried they took him off the ventilator and then justin held him and he opened his little eyes at us as if he was telling us he was going to be o.k he was going home in heaven to be with his father, I took him back and thats when he passed away, those short hours are still with me and I cherish them. The nurses let us take Preston in Jonathans room where they took Jonathan out of his isollette and I held both of them side by side it wasn't suppose to happen that way but again I am so happy they let us hold them together!
As for little big man Jonathan that was the day our lives became a roller coaster the motto: one step forward two steps back became the saying for 21 long weeks! He struggled but he was a fighter and let everyone know it and that things were going to be his way (that hasn't changed!) or no way! After the 21 weeks he was home.




Jonathan,
We love you! You have had a great struggle and you may have some long term struggles but know that you have two loving parents that will do anything for you we will fight for you, we will hold you, we will cry with you and we will love you unconditionally you are the world to us! you have come a long way from 1lb 12ozs to 13lbs 6ozs you have amazed everyone, you are very strong. You have a smile that can make anybodies day turn around. You have had a struggle with weight the last 3 months but if I could feed you cupcakes all day you would surely be fine. You have no teeth yet but I think singing "All I want for Christmas is my two front teeth" will surely speed up the process. You have very fine sandy blonde hair and you have beautiful brownish eyes, I say brownish because they look a little hazel some days. And last but surely not the least there is a plan for you nobody knows what it is, nobody can tell us what it is but we can continue to pray for the guidance GOD shows us so you may live out his plan that he has prepared just for YOU!. Mommy and Daddy love you with all our hearts now and forever! Our new motto is: OUR BEST DAYS OUR AHEAD of US!!

MOM and DAD

First time!

So much has gone on the last week its unbelievable, first Jonathan pulled his tube out again at 5am last Sunday however I wasn't about to put it back in since we were going to get our Christmas pictures. Jonathan did great he smiled and was in an excellent mood the whole time Justin and I wondered what was up, this is how things used to be but lately he has just been miserable! O.k so we didn't complain we got our pictures and we were able to put him down so Justin and I could get pictures of us, again he did great he just smiled and cooed at the person. Then we left and went to get some donuts and cider he didn't cry while in the car seat very, extremely unusual since he hates his carseat! We drove around because we took advantage of this he fell asleep and we just drove for two hours, he slept while we talked that hasn't happened in so long! Well he woke up but still happy as can be, went home and then it happened I had to put the tube back in, he was eating but way less then what he needs! He gagged and gagged and it came up and out his mouth. O.k calm down I'll do it again and for the second time he did the same thing only turning blue he caught his breathe and about 30 mins later he was fine, there was in NO WAY I was doing that again! So we thought we would go to the hospital and they could put it in, but Jonathans NI nurse called KIM and she told us to come over and she will put it in she didn't want him catching anything! I was happy to see Kim and her friend was over which is another nurse of Jonathans Carole she is great to! Well they attempted to do the tube thingy and again Jonathan screamed , cryed, kicked and held his breathe, Kim pulled it out and said there is no way your getting this tube back in this kid! So we talked about the G word (G tube) and I just don't want it I feel its a HUGE step backwards. we went home hoping and praying he don't lose any weight. That night I prayed that GOD would guide me and if this is what Jonathan needs to show me! We went to Beaumont E.R thinking he was getting a G tube since they wouldn't be able to put it back in! Well they got it back in (with a bit of a fight)and we stayed there for about 3 hours to see how it would work, we went home with the ng tube and he is back to crying all day and night!

He started aqua therapy it is great they worked his trunk and he was so calm, he LOVES water! He was really cute too he would kick his legs but he wanted to be held by his p.t Allison she is very good with him! SO I can't wait to do it again I see aqua therapy really working for him and that will be great for next summer when he can use our built in pool that we didn't go into this year!




He also is now being seen by a chiropractor and it really works, he is very different from you typical chiropractor he just moves certain vertebrae in his neck, it takes a whole 5 mins and Jonathan really doesn't cry and it seems to be working! I really like this chiropractor he is in farmington and he has some really great stories of kiddos he has helped one being in U of m and the baby was in Peds and there for a week no explanation of why this baby wouldn't grow he was labeled ftt (failure to thrive) Dr. C went and did a couple manipulations and the baby started to take his bottle and consume what he needed he went home the next day, to this day he is doing great and Dr. C still sees him periodically to maintain his posture. We are going 3 days a week and I do see a difference and its no pain to him so we will continue this as well as our 4 days a week of therapy!!



O.k now for the sucky thing. Jonathan has pneumonia in his left lung!! We were just told today! Wednesday when he went to aqua therapy he had a little cough I wasn't real concerned but later in the day our ped called to tell us more metabolic test came back (all normal) and I told her about Jonathan, she could tell I wasn't to worried and I knew we were going to see her Friday, well thursday came and around 701pm when the ped office is closed of course, he started throwing up, really strange for him but then was fine he was starting to not want anything to eat not even by bolus (oh boy) so I called the on cell doc and she thought it might be croup, we went to see Dr. G and his sat was 96 then they did this nebulizer thing to him and it brought it up to 99 so we went home with that and some steroids to kill that buggy. The nebulizer yea thats a whole nother story he hates it and cries but whats new and getting him to try and stay still ha ya right, but we manage(with two people)! It did seem to work but yesterday he was having a really hard time dealing with phlegm it was so gross and I felt so bad, I just keep sucking out those boogers and giving him pedialyte so he wouldn't dehydrate. He would get so much in the back of his throat he would throw up, he had no fever and after he felt good again but that mommy instinct told I should call the doc today and see what they think, we had an appt. at 145pm his sat was 91 not good Dr. M wanted him to do a breathing treatment and see what we get of course he was an angel for the breathing treatment why does my son do that, I tell everyone how much he hates it and he cries, kicks and squirms but he sat on my lap and took his breathing treatment fine, cryed a little in the end but that was it!!! Well we could only get his sat. up to 95 so we headed downstairs to get an xray, and it showed pneumonia! So we are at home granted it doesn't get any worse he doesn't have a fever and he is now on an antibiotic and we are doing treatments ever 4 hours (lovely). He is sleeping now, yes I said sleeping and breathing great. Pray that it just goes away, this is his first cold ever!!!

Jonathan will be 1 on the 22nd yippee!!

Pizza Crust

Jonathan is now 13lbs 5ozs he is doing great getting the calories however he HATES his ng tube he knows how to make himself throw-up, gag and just plain fuss whenever he doesn't get his way! He has actually gotten so good at making himself throw-up (which doesn't help in his weight) that today when he threw-up he blew out his nose so hard that the ng tube came out!! This is very frustrating because I do not like putting it back in so he won because I waited till tonight when he was sleeping only for him to awake screaming (who would blame him) to put it back in and to tell the truth he did pretty good getting all milk through his bottle but he was down about 3 ounces so yes its a lot but considering he is eating anywhere from 800 to 865ccs a day that was pretty good, we have gradually introduced cereal again and he ate it just fine and his sweet potatoes he only ate about 2 bites but thats o.k but he LOVES pizza crust he will suck on it and gum it forever I don't mind either because it has butter on it so it can only add a hint of calories:)



We are going tomorrow to get our holiday pictures and the coolest thing is that it is a studio right by our house and we explained how Jonathan can't be around other children due to his premature arrival and they were willing to let us come in at 845am before they even open, I thought that was really cool.

Jonathan is still very cranky especially at night he just screams and screams last night(12am) Justin was up for 2 hours just trying to console him! I have been so stressed I actually ended up in the hospital myself last week I was only there for the day but was taken by ems from home because I was having strange twitching almost like seizures, the docs said it was stress related muscle spams where my whole body just shook uncontrollably (like seizures) to say the least I scared everyone to death. I am o.k but realize I cant do everything myself, I just don't know what to do about his crying I am in no way kidding when I say he cries a lot Justin and I counted the last couple days and Jonathan crys about 8 to 10 hours a day (intermittently) and not one doctor is concerned!

Jonathan goes to get another ABR hearing test thursday because we think his hearing has improved and they need to do one to possibly fit him for hearing aides if he needs them or if his hearing is at a stand still the possibility of cochlear implants down the road, hopefully not the latter.

I can't believe Jonathan will be one in a couple weeks hard to believe, GOD obviously has a plan for him!!