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!!

Weight gain and our first halloween!

This is so great that I get to write about some great news! First and most important Jonathan is officially 13lbs 2.2ozs YAHOO!!!! He is eating about 26 to 30 ozs of milk a day I know it seems like a lot, when the last time we were feeding him he was only taking about 17 to 19 ozs now granted he is getting bolused (feed through his nose) for the majority but we are getting his tummy bigger and the best thing he is tollerating it! Hopefully he will only need the tube for a little while. Justin and I have thought about going to a feeding clinic there is one in grand rapids and another in Ohio that could help wean him from needing the tube and being able to take more fluids in before he tuckers out. However he will be starting to eat soon so he won't need all the fluids. This is very interesting though, if you remember he was eating a fruit and veggie everyday we have since taken him off everything except his milk even his cereal and now he doesnt want anything to do with it!! He does LOVE breadsticks he will suck on them for a good 5 minutes and he loves noodles, we have him play with lots of foods just so he doesn't get any oral aversion from the tube maybe he will be a carb junkie like his mommy! The OT said he could just be tired of the real smooth textures and want more lumpier foods, I don't know I think we are going to play it safe for now and maybe next month or I should say later this month introduce new things!


Our first halloween it was such a beautiful day our little man was tigger and the cutest tigger at that! We went to a few houses and that was enough. A few people commented on how cute he was and of course the guessing how old he is, some said 4 months and another said 5 months oh well at least hes tall(27") and I think he will catch up esspecially with a mom and dad that LOVE food! Please pray for continued growth. We love you all!

A tube in his nose!

Jonathan is doing good, we are at home and he has increased his intake of milk and hopefully we see a good weight gain tomorrow. Jonathan is such a trooper he went through his MRI and the 3 hours it took, I was scared to death crying because Jonathan was intubated and they told me he could end up in the icu because the transition of taking the tube out and him not tolerating it. Well happy to report they took it out and he didn't even need support Justin and I went and seen him and he was smiling how happy that made me! The doctor had a plan of Jonathan in taking 100ccs in 3 hours to give him a total of 800ccs in 24 hours sound great right? I knew that wouldn't work Jonathan is a grazer and he takes at max 60ccs at once but the doctor or I should say resident said in order for us to leave he had to do this I told her then she needs to be there to watch him, she went on to explain that she was very busy with a lot more patients I said well it looks like we are going to be here for awhile so we would just wait and in the meantime I will feed him his bottle! She agreed to watch and came back about 2hours later and the nurse put in 60ccs then another 40 through an ng tube (a tube through his nose that can be hooked up to a bolus and then you put the milk in the bolus and it travels down to his stomach) around 70ccs Jonathan threw up everywhere all 70ccs the doc said well I guess that won't work so after going back in forth with her about changing his feeding arrangements she agreed that I would feed him as much as I could by bottle then bolus the rest hoping to get 100ccs every three hours. He did o.k we only got 700(23 ozs) but a huge improvement when he was getting only 510ccs (17ozs) at home. The next day she came in I told her we were ready to go home with the tube until he could intake the amount he needed to grow. She then said "well he needs to intake 800 or I can't let you go" To say I had the last word is an understatement we DID go home that day!! I am really finding out you are your child's advocate 100% and you have to stand strong or doctors, therapists anybody that is involved with your child will try to persuade you to think there right and your wrong. Jonathan is doing good tonight he got 750 ccs and yesterday he got 800 so he is doing good in that department but he is really cranky now I mean crying nonstop for 4 to 5 hours a day and it sure is taking a toll on me. Justin and I went to a hotel last night and thought Jonathan would like the pool and he did but from 11pm till 7am he cried and cried and cried some more we all got about 2 hours sleep. We tried to let him cry it out but after about a half hour he threw up and only I can console him. He likes to be held and walk around if I sit he wails until he gets his way he even turns blue what the heck happened to my sweet little angel! I can say my mom and dad have helped out a lot because there are nights where I am crying right along with Jonathan I don't know what to do I am so lost on why he is doing this he always has been a moody boy but now he is just plain high maintenance I thought boys were supposed to be easy to raise! I know he will out grow this but I sure hope its soon! The biggest news is that the ct scan, mri and almost all other test have come back normal we are waiting for a creatine test to come back and if its abnormal it will explain the failure to thrive if its normal we are back to square one on why he is not gaining weight, but hopefully tomorrow he has gained something if not we have real problem because he is eating enough calories and he surely isn't running or doing any other exercises except crying (which he does burn calories) that we know of, so then we will be talking about a malabsorption problem in which he is not absorbing the proteins, fat and his acids in his belly are not doing what there supposed to and he is just peeing and pooping all his calories out. They also did a chromosome test to see if genetically something is wrong Justin and I both believe that will be normal since there is nothing that runs in our families, the geneticist did say however that Justin and I could have some genes that were passed on to him and there not be one person in our family with it, I don't know and we won't know for another 2 weeks please just keep us in your prayers that everything just starts falling into place and that his weight is better tomorrow like 13lbs something?

Emotions!

So much to blog and I don't know where to start. First off when I imagined having a baby this is not quite what it was so supposed to be like. Having the news of twins was the most shocking, awesome, nervous time of my life, overwhelmed to say the least but overwhelmed with joy! Going into the hospital at 21weeks 6days overwhelmed but not with joy, scared, surreal, WHY ME! Doctors telling me the boys won't make it, I would deliver in the next 48 hours and they don't recesutate at 22 weeks (for very good reasons) again overwhelmed with fear and everything feeling surreal feelings of numbness, helplessness and scared. Makeing it to 25 weeks with both boys growing, great heart rates and moving around like crazy the feelings of joy, pride that the docotrs were wrong, relief that they would have a chance if they were born this early. Delivering two beautiful boys by emergency c-section at 25w 3d not hearing a cry from Jonathan but hearing one from our precious Preston, the medical team that we would get to know very well rushing both boys to the NICU the feelings of being ripped off, someone just sucking the air out of you, I don't know if I'm to cry or be happy so I just lay there desperate for answers of why! My husband rushing to the NICU as proud as a daddy should be taking video of the boys, they were so small, the doctors telling my husband to go and get me because Preston was very sick and not going to make it, crying for 6 hours until Preston passed in my arms he was so strong, so beautiful, feelings of hatered toward the docotrs for not saving my son for not giving me something so I wouldn't deliver wanting to blame, blame, blame! Looking at Jonathan a little fighter himself, our miracle, our hero. 21 weeks of crying not knowing what the next day will bring, scared of the phone ringing, scared for our 2 pound baby getting surgery. Then it was joys of happiness, laughter the longing of our son to be home with us, our family was complete.

After being home for 4 months, Jonathan starting arching his back takeing him to the doctors he thinks its his formula so we change it then change it again 5 times in one month he is severly miserable he is losing weight, when he was doing so good. We end up in the hospital for failure to thrive they want us to try medication (prevacid) and 5 days later were home and he is back to our happy growing baby. Then a month later he doesn't want to eat and he not losing weight but not gaining, we go to our 6 months evalutaion follow up since being dischared from the NICU the neurologist is concerned about his head control, she liked how he was grabing the bell and spoon she gave him and he put it in his mouth but that head control is very unsteady, he did lift it and lower it but he just can't keep that nogging up. Were sent for him to get a chromosome testing she thinks it might be genitics however there is nothing genetically wrong with either side of our families! We don't get the results till this friday, then he had to get a ct scan they think he might have a brain bleed that wasn't detected in the NI eventhough he had 6 ultrasounds done and all were negative, and we got the results of the ct scan and its negative and looks normal. The next thursday we go to his new ped. doctor and she wants us to go to the hospital since he lost an ounce so again here we are for failure to thrive a month later, its now 3am on monday he had an upper GI done and everthing structurally is normal, we have a scope today at 830am he is now on his i.v. They since increased his prevacid to twice a day (today he did phenominal eating 20 ozs of milk at 28 cal an ounce, a tbsp of cereal with butter, an ounce of squash). I am again terrified, emotions of sorrow, helplessness and the inevitable question of why! He has to be intubated because he will be under anestethia and they want to do an mri they are still convinced there is something wrong with his head. I have cryed so much tonight, I am so scared for him I am scared about him being intubated, I just want them to find out what is wrong and fix it make him feel better there is nothing worse then watching your baby suffer in pain and there is nothing you can do to to make them feel better, I just hold him and love him. Its so frusterating, when do these feeling subside, when do you feel like everthing is going to be o.k when do you stop worring about everything? I know I will never stop worring but when do we get to worry about simple things like when is his first tooth going to come in, when is his next immunizations when is the next well baby check up not every week check ups for weight gain, should we get his first haircut on his birthday (he really only has peach fuzz so so much for that one). All I can do is ask for continued pray all the prayers he received did something he is here by the miracle of GOD and all of your prayers. He is the greatest little boy in the world that is so loved and his story touches and will continue to touch many lives. Jonathan one day you will read this and think I was a worry wart but I want you to know I love you with all my heart I will never stop and I will be a worry wart your whole life. Your my hero little buddy I love you, mommy!