Wednesday, December 10, 2008

Wordless Wednesday



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



Tuesday, December 9, 2008

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!

Thursday, December 4, 2008

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!!

Monday, November 24, 2008

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!!!

Saturday, November 22, 2008

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

Monday, November 17, 2008

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!!

Saturday, November 8, 2008

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!!

Saturday, November 1, 2008

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!

Sunday, October 26, 2008

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?

Sunday, October 19, 2008

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!

Thursday, October 2, 2008

A need to vent!






So we had our appt. with the G.I doc and I was sure Jonathan was 13 lbs, wrong he was only 12lbs 13ozs only up 1 oz in a week, HOW? he is at 17 ozs a day breastmilk and its fortified to 26 cal/oz, eating about 2 oz of solids he was gaining fine and I just couldn't produce anymore so I had to switch to formula, I am blaming myself if I would of just taking the prescription, if I would of just pumped more but he is back on donor breastmilk but its like he is not absorbing it. He is happy as can be its not a struggle even to get him to eat, he is on a nice schedule at night which he never was on. He is now grabbing for his spoon which made me cry cause I see him developing he is trying to get it to his mouth but overachieving and getting his cheek instead but he wasn't doing that even a week ago! So at the appt. the GI doc looked at him and said Jonathan has a flat head and his eyes appear large, what is that supposed to mean he looks fine to me, then looked at his hand and said I am going to get my geneticist (sp?) to take a look at him. O.K I went alone to this appt. and by now I am scared to death what is wrong with my baby?! The other doc. came in I didn't even want to put Jonathan down, I didn't need this guy to tell me anything, this is my baby and he looks fine is what I wanted to scream but instead I put him down and the doc looked at Jonathans hand and said I concur I believe they should come in and make an appt. with me. What are they looking for on his palm are they witchcraft doctors what the heck do you see when you look at my sons hands and his response was there are many syndromes out there and thats what might be contributing to his weight issue, DO YOU NOT GET IT MY SON WAS FINE HE WAS UP TO 13lbs A MONTH AGO AND I HAD TO SWITCH HIM BECAUSE I WASN'T PRODUCING ENOUGH!! So I am now stressed I have been looking at my son and he is the most beautiful baby in this world I love him more and more each day, he amazes me, hes a miracle, he is GODs gift to my husband and I when doctors told me I could never have children!!!!!! I did not make an appt. with that doc. I do however have an appt. with Jonathans ped and will talk to her I am so upset I can't quit crying of course I will love him no matter what but thats not what I expected today not at all!!

Sunday, September 28, 2008

Were home and thriving!

Jonathan is on donor milk and its a true GOD send because he has taking off again. He is drinking about 17 ozs and eating about 3 ozs, he is getting close to that year old mark so his weight is slowing gaining, he is 12lbs 12ozs sad since he weighed more than that a month ago oh well he is gaining, happy and back to our fisty little man! We switched pediatrician and Justin and I are so happy we did she is great, (Thanks Jamie for the referal) she said Jonathan looks to be doing good and if losing a little weight is all he really has gone through for being a 25 weeker weeker we should feel blessed (since I am a fanatic about his weight its hard to see him lose any of it but I am also glad he is not losing anymore). He is going to be getting weighed every week for awhile just to make sure he continues to gain, he will be getting the flu shot and possible our first synergis(sp?) shot this friday man I hate that summer is gone I will especially miss going to church! Jonathan is back to wearing his helmet his poor head sweats so bad I mean when we take it off there is sweat all over. He is bringing his hands to his mouth and he is batting at things, I love it just to see your baby grow up in front of you is so amazing! Still no head control, we seen a early on p.t and she thinks once we get the back muscles stronger everything will fall into place. He doesn't mind to much being on his tummy where before he hated it and I can tell he wants to lift his head to look around when we're holding him but when it gets up it flings back and he really can't get it back up without help. The physical theripist ask which hand he uses more of and it was clearly his right when he came home now it seems like the left, he is always proving me wrong. When we went for the eval. he was on his best behavior laid on his belly looked to the left, sat in my lap his head against my chest looking straight ahead, using both hands however the left one stayed clinched a bit more they didn't even know till I told them he had torticollis, he can be a stinker! TOday little man has had lots of gas and cried and cried he hasn't pooed in 3 days which I think is unusual since he is on breast milk, well I will call the peds. office tomorrow afternoon if nothing shows up tonight but I hope for his sake it comes out cause that has to be painful my baby sure needs a break, maybe a vacation to florida this spring? As soon as I find my camera I will post birthday and helmet pictures!

Sunday, September 21, 2008

A hospital stay:(

Well Jonathan continues to not want to eat, he is losing weight! So we went to our ped. and he admitted us to the hospital Friday the GI doc looked at him yesterday and thinks its reflux so we are again starting prevacid, the last time we tried a month ago we only tried it for 2 days so this time we have to try it for at least two weeks and hopefully we see an improvement. He just did not like the transition from breast to formula and our crazy ped. (we have an appt. with a new ped this tuesday hopefully were home) telling us to try different formula and to his recommendation. Jonathan has tried FIVE different ones in the last month :( So the GI doc today said we could go back to similac advance but I think I will put him on neosure its easier on his tummy. So jonathan has the helmet. sitting on the desk in the living room, he can't use it since he cries and loses calories. While here at the hospital a neauro specialist came to see us and low and behold she said jonathan has a flat spot (thats why she gets paid the big bucks)! I am really upset were here, I am a freak about cleanliness and him catching a cold particularly RSV but I also want this problem solved it is so hard to see my little man crying all day because he is in pain. Justin comes to the hospital at night because his mom is in U of M NICU (neuro itensive care) with a moderate brain bleed that happened suddenly while she was working out in the pool! So all of this is very stressful right now and we are just praying its going to get better!

Monday, September 1, 2008

Happy Labor Day!



So much has happened and actually I am overwhelmingly tired to say the least!
I'll start out with Jonathan had his first studio pictures done the middle of August and he pretty much cried through the whole thing, however we got some pretty good shots! Next we went to his ped because of all the crying lately and found out he had an ear infection to which the doctor put him on amoxicillin. We went for his nine month well visit and even though he is gaining weight slowly he is gaining, 13lbs 1.5oz. Everything else turned out o.k I talked to him about his constant crying and he wasn't concerned (lucky for him to say he isn't dealing with it)! So that was on a Thursday (22nd)and the doc sayed stop his antibiotic on sat. which would only have been 7 days, whatever I stopped him on Monday so he had nine days worth. Now I am not in the least exaggerating when I say Jonathan screamed all day Tuesday, on Wednesday (still crying) I took him back to his peds. office where of course he is a happy little boy, again I explained how I have been up with him for 36 hours crying, I've had to pull over to get him out of his carseat because he was turning himself blue! The doc looks at is ear and said its still a little red, to where I immediately said your the one that wanted him of his antibiotic sat. and in turn I kept him on it till monday!!!!!!!! So the doc said he wants him to go on augmetin it's stronger and it will clear it up. So I started him on that Wednesday night, he slept a little better but Thursday was in misery again, another whole day of crying! Friday we went to p.t where Bruce could do very little with him since he was so tense. Well on top of all this we have been living with my in laws which are great people but since our house is getting a complete makeover we can't stay there but its nice to have those extra hands! So Saturday was just another day of pain (I took him off of the augmetin Friday around 2pm) for our little guy, what is going on he just cries and cries and now its been 2 days of not eating much so of course I call the ped. office where they want us to come in at 1:30, this time I am taking my mother in law she has seen whats been going on and she is not shy so she will tell them I'm not a loony mom that is going crazy! So we seen a new ped. because our doc wasn't in and to our surprise he tell us augmentin is very hard on babies stomachs errrr, why the heck would he put him on it! So this doc looked at his ears and they looked fine but he did lose weight he is now 12lbs 14ozs so he wants us to see our regular doc this Tuesday, tomorrow. He really is doing better not crying as much but we also changed his formula, everyone told us its probably not that but he just went on formula 2 months ago up until that he was exclusively on breast milk! So we went to a sensitive and even though he cries less he still isn't up to par on his feeding, only getting about 17 to 19ozs a day.



Well on a good note Jonathan's hearing seems to be improving he looks when people are talking to him, but only sometimes but at least we see an improvement. We are going to celebrate Jonathan's 1st birthday on the 13th of Sept. since were getting close to rsv season. I am still very concerned about his head control, he is still not lifting it, we are getting the helmet on the 11th of Sept. so maybe that will help! Well I must tend to my crying prince! Any suggestion would be great!

Tuesday, August 12, 2008

What an Adventure!





Wow time goes by, almost a month since my last post! Well we went to the audiologist at U of M and they reconfirmed that Jonathan's has auditory neauropathy (he can hear but not understand what we are saying) however at beaumont hospital they had a response of hearing at 70 db and this time at U of M they had a 55 db response so the plan is we will continue praying that Jonathans hearing just gets better, the audiologist says it does happen, but in the meantime we will be getting extensive speech therapy 2 to 3xs a week then in a month we will reevaluate and either he is getting better or Jonathan will have to be fitted for hearing aides. Justin and I both see an improvement with his hearing but do realize his hearing impairment. He enjoys looking at objects that have lights or moves. He doesn't really respond to rattles or soft noises he does however respond when the dogs bark or when someone is using a higher voice. Its hard to tell a doctor what he responds to because sometimes he responds to the noise and the next time he doesn't, it does get frustrating! So we will just start therapy (we actually haven't started yet)and go from there.
We started stage 1 vegetables sweet potatoes were the first and his favorite! He likes all the orange veggies (s. potatoes, squash and carrots) and very much dislikes his green ones (peas, green beans)! Just today I gave him applesauce and he absolutely loved them eating the whole 2.5 ozs, he has decreased his milk intake but is eating more solids. Our day is now a fruit in the morning, veggie in afternoon and cereal just before bed! He got weighed last week and was 12 lbs 10ozs not as much as I thought but he is gaining (I sound like I am o.k with this but in reality I am nuts still counting every ounce that goes in him) typically he is getting about 20 to 22 ozs he just keeps getting longer and not wider!
On Saturday the 10th we heading to Michigan Adventure and oh what an adventure it was!! We went with grandma Tina, grandpa Mark, uncle Matt, great grandma Jane, her friend Betty, aunt Cheryl and cousins Susie and David we stayed in a resort which was really nice and the first night was o.k but on Sunday we went to the park and it was windy 71 was our high and Jonathan is teething. so among the tears, crying, squirming, won't sit , lay or stay in the stroller it was fun! Both Justin and I were ready to pull each others hair out, so for a break aunt cheryl rocked him to sleep, we were so happy when we came off the roller coaster to find Jonathan sound asleep in cheryls arms with a blanket over him, but 15 mins later she put him in the stroller and awake and cranky he was! We went back to the resort and grandpa and great grandma and betty stayed and said they would watch him, he was so happy when I put him on the bed, laughing and trying to roll! (he absolutely loves laying on his back but hates tummy time)! So the rest of us headed back to the park for a couple hours we stayed in the water park and it was really nice to see susie and david have fun, we can't wait till Jonathan is doing these things! So now were back at home and everything is back to normal happy, cheerful little boy unless his gums are hurting! I wonder if the wind was bothering him or if his hearing is irritating him (one minute he hears clear the next min. he can't)I don't know but if you have any suggestion on making teething better please share! I really need to interact Jonathan with other babies he just lights up with them but since we are going into the RSV season it will probably have to wait till next year.
Physical therapy is going good, Justin and I think Jonathan will benefit from a helmet so I will talk with early on in Sept. and see what we can do. Jonathan still is not holding his head up, he does hit his toys and kicks and stands with our help of course but has no interest in holding his head up, he did move at his own pace in the NICU which was slower than most I just have to be confident that he will succeed soon at this! Well enjoy our cranky pants pictures!

Saturday, July 19, 2008

Constipation SUCKS!!!


So where do I start? Jonathan is doing good with therapy he is looking left and right is putting things in his mouth, after you put it in his hands. He is not holding his head up, so much for heads up at 4 months but I know he's a preemie and there are bound to be some delays its just in the back off my head, I know all babies develop differently! He is doing a little babbling he is big on smiling. he tries to laugh but what comes out is so soft and cute, he's starting to cry where you can actually hear it his cry is louder I never thought I would love to hear him cry! He is still off BP medication, we go back this wednesday to check it, we have an appointment with U of M for his hearing on the 30th!!! He is weighing 12 lbs 3 ozs As I last wrote he is on cereal(oatmeal) and eating a lot of it, so on friday I gave him 2ozs he ate it all! On sat. he slept all night getting up only once and then up at 10am back to sleep at 1130am then didn't get up till 3pm very weird for him, so of course i called the doc, since he didn't have any wet diapers the end result was they wanted us to come in at 430pm! Well at 330pm Jonathan smiled at me and it was everywhere poo from belly to toes he was back to my little baby, so I called the doc and told him what happened he asked, "how much cereal did you feed him?" He was floored he said that was way to much for him, how was I supposed to know, he ate it with no problem, so were back to 1/2 to 1oz, however it hasn't helped the constipation he arches his back, cries and so does his mommy and is just miserable for like 20 mins after eating, we see the ped. monday and see what we can do! He is starting to hit I don't know if that possible but if he doesn't want his bottle or he doesn't like you in his face he hits the bottle or your face, maybe he is just wanting to touch or he is just going to be a brut! He went into the lake for the first time he cried at first but didn't seem to care. We leave for Michigan adventure in 3 weeks we are staying at a resort and Jonathan's cousins are going to be there too, were going to have so much fun!

Tuesday, July 8, 2008

Giggles


Jonathan is getting so big, he is 11lbs 12ozs and 25 in. he is doing great at moving his head back and forth and he is starting to lift it more, he is very curious about whats going on around him, he is starting to giggle, which is just a hoot! He makes faces and loves oatmeal cereal(we found out he does not like rice cereal and that why all the tears during his feedings) if he's not cranky! He is sleeping better we have a routine so I think that helps and he loves to try and stand he is eating better not being such a grazer. We have gone to graduation parties, 4th of july parties and have been up north with both grandmas and papas! He is just loving the summer we are going to michigan adventure in 3 weeks then summer is almost over but I don't want to think of that, we are enjoying everyday! We are now off all, yes ALL medications!!!!!!! We seen the eye doctor and he thinks Jonathan will have to wear glasses but we wont know forsure until he is a year old and its not because he was a preemie but he is taking after mommy! He is cuter than ever and I have actually let him cry for more than a sec before picking him up I think I went for 1.5 mins but that all I could stand it was painful to see him try with all his might to get this itty bitty cry out but to tell you the truth his cries are getting louder! I will post some recent pics as soon as I get a minute but were headed out to go on the boat he loves the boat he falls asleep as long as daddy isn't going to fast:}

Thursday, June 19, 2008

Yea Summer Time



Well lots are happening! Jonathan got dedicated at church then we had a small bbq after it was a beautiful day and everyone went swimming! Jonathan will now eat rice cereal just before bed which is nice cause he sleeps longer (yea for me)! He is bigger a whopping 11lbs 2 ozs he can now fit into 3 month clothes and he is 25 inches long and no waist so shorts and pants kinda fall off when you pick him up but has his daddy's shoulders for sure nice and broad, he's going to be a football player get a scholarship go to Michigan State and study to be a lawyer, ok so I am jumping the gun a little. He loves the outdoors looks at everything, loves the water is practically a fish we have only put his feet in the pool and he just smiles and tries to giggle but its not coming out yet! He does have a little of mommys temper and if he doesn't get his bottle in time he will let you know, he is very strong you really have to watch him he will kick his way out of anything! Even his ped. says he is very strong for his age but really he had to be look at everything he has gone through! He is rolling from front to back, is grabbing his toys and putting them in his mouth loves to chomp on them and loves his gums massaged I think its to early to be teething but his ped didn't think so, so maybe in a month we will have a tooth, I hope not he is growing up way way to fast! I looked at him the other day and just can't seem to grasp that he was only 1 lb 12 ozs he is doing so good, growing fast and starting to make little noises I am on the verge of crying again he is such a miracle. I don't know what I did before he was in my life, he is Justin and I's everything he has so many loved ones that care and continue to pray for him he is just perfect and I love him so much!

Friday, May 30, 2008

Is this parenthood?



Jonathan is totally over his cold but now I am sick, I hope I get over this soon I have had it for about 1 week now and I can't take meds because I am still breastfeeding, if its not him being sick its me! Oh well I guess thats being a parent and I still wouldn't trade it for anything!!!
Anyway jonathan is doing good his p.t is very happy with him, he is starting to make noises and trying to roll over. He still isn't holding his head up but he is trying. Justin and I tried cereal with him and that didn't go over well he kicked, cried and spit it out oh well it was probably to soon anyway he is only 3 months corrected (as of June 3rd). We dont see the pediatrician until the 23 of june for vaccines, his weight is about 10lbs 10ozs he is only in the 5th% for weight but 75th for length thats ok I know he is healthy and he eats when he is hungry! We have started showing him off and I have actually have taken him into Costco but was extremly worried so I held him the whole time of course. Well we are going to church this Sunday, please pray for protection from all illnesses! Enjoy the pics of Jonathan trying cereal!

Saturday, May 17, 2008

10lb CLUB!!!!!


Jonathan is over his cold a little bit of a cough still but he is doing so good! He finally hit 10 lbs he is getting longer than heavier he is almost 24 inches. His eyes keep changing from blue to brown so it will be interesting to see what color they will be. All appointments are going good he sees his heart doctor this Thursday and she already said she will be taking him off his medicine for his blood pressure which will be nice for the both of us. He loves bath time he just figured it out that when he kicks he gets mommy all wet!! he is eating very good, I just let him eat when he wants which is about 10 to 12 times during the day but he only takes 40 to 50cc's at a time, he doesn't really want to eat at night I am still waking him but that's o.k hes up to 17 to 18 ozs a day, He is probably going to be tall and thin, he still has no hair just a little fuzzes which are very blond! He loves when mommy dances with him and he loves to stare, he loves when daddy is home cause they cuddle and they both fall asleep together. He is really a sweet baby I cant wait to take him to church and family to show him off! I can't wait till we go up north on our first family vacation we are thinking sometime in July. Jonathan will be getting dedicated at church on the 8th or 9th (second Sunday) of June. He has out grown his newborn clothes and is now in 0-3 months unless its gap or old navy then he is in up to 3 months(they run big)! Its a nice day today so we are off for a stroller ride!
Hope you enjoy the newest pics!!

Saturday, May 10, 2008

I AM SO FRUSTERATED!!!!!

Well after keeping Jonathan in a "bubble" he still managed to get his very first cold! I knew something was up he kept wheezing so we went to the doctors Thursday last week and sure enough the doc said this might be his first little cold, err how could this happen everyone washes their hands nobody is over to visit, except the visiting nurse, physical therapist and the hundreds of doctor appts we go to!! It got so bad that by Monday I was in tears, my baby was coughing so much he didn't pee for 12 hours so off to the docs we went. The doc said we needed to go back to the hospital (NO WAY)!!!!! So Monday we were in the hospital and of course his nurses from the NI came to see him. I tell you I felt a bit like a failure we were only home for 2 weeks my poor baby! Well they were going to start an i.v to put fluids in him but he heard that and started eating on his own! They had to take blood from his heal of so many bad memories, well after 2 failed attempts they took blood from his arm TWICE he is so much stronger than his mommy, he didn't even cry! The docs thought he might need oxygen but he is a trooper and breathed on his own. Well by Tuesday morning he was eating but still had/has a terrible cough so they sent us home! He still has a really nasty cough sometimes so bad I get a bit nervous so they said we get to just wait it out, oh I hope it gets better soon! He is now 9lbs 11ozs. Tomorrow is my very first mothers day, oh yea Jonathan got me a dozen roses man he's amazing!!!

Saturday, April 26, 2008

21 long weeks

So after 21 long weeks of emotional, physical and mental roller coasters, terms like septic work-up, bilirubin, pda, rop, cbc, cp, ot, pt, ivh and list gets longer have now passed us, somewhat! JONATHAN is home where he should be! He is doing great he has no tube, no wires, no oxygen and no monitors. O.k so I will admit it was a bit nerve wrecking our first night, I was constantly checking him but everything went great. When he was discharged our only concern was his feeding and that he was losing weight a big no-no, so we all agreed to see what he would do when he got home and hope and pray he would just take off and gain weight. The doctors made arrangements for a visiting nurse to come see us once a week and his first pediatrician appt would be the 19th two days after he came home to check weight and make sure he is not losing or we could have to put a tube in him so we could feed him through that (I think not). So we went to his ped appt. and he was 9lbs 2 ozs the doc was so surprised that he was 9lbs he said to us (me and the two grandmas) that he thought Jonathan would be around 5lbs! He said preemies don't get on the growth chart but Jonathan is in the 25th percentile for weight and 75th percentile for length! So our gaol is from here to just keep putting the weight on him, the doc was very impressed with him! Then came our visiting nurse, when she first arrived she said to me looking at Jonathan I must be at the wrong house because he doesn't look like a preemie he is huge (I just have to laugh. I love it!!) She came on Monday and he was still 9lbs 2ozs that's o.k hes maintaining his weight. Then the ped appt Tues. 22 his weight 9lbs 4ozs the doc said well he is doing everything great! The visiting nurse came back on the 25th and he is up to 9lbs 7ozs!!!
so everything is going great, I have to admit that the feeding thing gets to me sometimes I start worrying so much it seems I am always sticking a bottle or breast in his mouth, I get so wrapped up and think oh no is he gaining weight and yes I log every cc that goes into his belly and he is pretty consistent however I don't count the breastfeeding time cause I have no idea how much he gets but I know its just a snack (for now till I can bring my supply back up)! During the day Jonathan is a snacker eating every three hours plus a snack or two in the middle of those three hours, at night I wake him up every three and he eats very good almost always asleep through those. He stays awake all morning with a two or three naps of a whole 20-25 mins but is fast asleep around 7pm and up at 6am ready for the day, he is such a big boy!! He was a bit shocked at his new surroundings and these two big things that run around and bark, he didn't care for his swing or anything but his bassinet and of course being held! He now enjoys his swing for about 1/2 hour but not a bit longer! He is very squirmy doesn't like to be still except when he is sleeping thank goodness, he starting to roll over he will get about half way then roll back, he likes his bottles warm not cool and of course not hot and trust me he will let you know if its not to his liking, he will get that nipple out of his mouth he will close his mouth and not let anything near there till you warm it up and put a little drop on his lip and then he will let you know if its o.k! I have no idea where he got his stubborness:) He poops and pees great I think he had christened everywhere in the living room!
He will be getting p.t twice a week to help his neck muscles he really favors his right side so we need to work with him on his left, we have a visiting nurse once a week we see his pediatrician once a week, he has eye appt every two week, he see the cardiologist next month and he will be going to an audiologist next month! So the appts. don't stop but I think we are all handling it well because its a lot better than being in the hospital!!
And yes we have been keeping in touch with our nurses (Kim and Jennifer) we do miss them a lot but we know we can visit them! So that is all for now!
LOVE you all

Wednesday, April 16, 2008

Jonathan is going HOME!!!!!

can you believe what I just said but its true our NICU roller coaster is finally over we are taking him home tomorrow the 17th!! Also Jonathan requires no oxygen or feeding tube he is doing everything himself! We need to work on his feedings but he'll get it cause his daddy has no problems eating so I am sure he won't either:) On a sad note I am so upset at my ob doctor she did the circumcision and it required 3 stitches not to worry though everything will still work, they just got a blood vessel that wouldn't stop bleeding. he is such a trooper he didn't really react to anything just give him sugar water on his paci and he was set! His mommy was more upset than him. Justin and I have waited 21 weeks for this day and its here it is a bitter sweet good bye to some of the greatest nurses especially our 2 primaries Kim and Jennifer however I think jonathan is going to be apart of their lives for a very long time. I think we convinced kim to watch him for a wedding in August, I told her I would just go to the ceramony and she said if she watches him I have to go to the reception too! Well we have a ways to go for august for me to think about that! So my next blog will be about him home!!YAHOOOOOOO
P.s We thank you all for you continued prayers! We also know we couldn't have made it this far without GOD he really protected Jonathan and kept him safe!

Monday, March 31, 2008

Keep eating big guy!

O.k where do I start. Jonathan is no longer on oxygen except for feedings but even then he is sometimes not on that, so to say the least he is doing great! He is gaining weight 8lbs 8ozs (he's a chunk) he is still on diuretics for his blood pressures but his bp's are great! So the "only thing" we are waiting for is him to eat from all bottles and then we can go home!!!! I just said go home I never thought I would be able to say that it feels wonderful, this experience is something I never want to do again to say the least, our little boy is a miracle indeed and I thank GOD everyday for him. Parents often take their kids for granted but instead you should kiss your child and thank GOD their healthy full term kids our road doesn't stop when we get home either. For the next year and a half we have to be hermits from Sept thru April, we can't use baby powder, vicks vapor rub, we have to even be careful of the stuff we clean house with anything that could be harmful to his lungs! We have become the biggest germaphobs washing our hands after everything I even limit myself to petting the dogs because I know when I'm done I have to wash my hands we are going to buy surgical face mask for the just in case I might be coming down with something so Jonathan doesn't get it! I am just really happy we got through our first winter yes it was in the hospital but it make a huge difference coming home during spring than the winter! Well just keep us in your prayers for a continued success at bottle and breast feedings so WE CAN GO HOME!!!!!!!!!!!!!!!!!!!!

Tuesday, March 18, 2008

Jonathan is a big boy

March 18th
Well there's a lot that has happened sorry it's been awhile but things are moving in the right direction!!!
Jonathan has had a thyroid test and it came back great. He has had high blood pressures for about a month so the doctors wanted to check his kidneys and heart both are great praise GOD! So the doctors will start him on diuretics(sp?) and he has been on those for about a week! His bp has been very good since starting his meds. Other good news Kim is back as of the 10th (she was gone for a month) we couldn't be happier! Thank you for all your prayers for her! Jonathan had his first bath he was a bit shocked but seemed to like it! And the biggest news Jonathan is OFF CPAP and on nasal cannula full time he is doing great he has had it off for 4 days! He is on 21% oxygen which is room air so it looks like he may be coming home with no oxygen but we will have to wait and see! Tomorrow I get to try breastfeeding again and if all goes good he should be coming home the first week in April! I can't believe it it has been a journey but I can see the light at the end of the tunnel! GOD has really watched over our baby because we just keep seeing babies that are having 3 to 5 surgeries and all thou we have had one we just praise god that that is all he has needed! Some of the nurses are just amazed that he has needed no eye surgeries babies born at 25 week gestation almost always need some kind of surgery but as of last Tuesday his eyes are great! So again thank you to all that have kept Jonathan in your prayers because I know if it weren't for them we would not be able to say how great he is doing! I love you all and can't wait to show him off!!
Jonathan is now 7lbs 15oz's remember when he was born he was 1lb 12oz's he is a big boy!!

Monday, March 3, 2008

Hard Day

March 3 2008
Today is Jonathan and Prestons original due date (40 weeks) It has been very hard thinking that I should have both my boys in my arms, healthy and happy! I shouldn't have to worry who's taking care of Jonathan and if he's o.k because they would both be in their crib and I would be taking care of them not different nurses!I often wonder why, but I do believe GOD has a plan and he knows what he is doing!
Well its been awhile but things are starting to look brighter! On the 22nd Feb. the doctors lowered his peep to 6 so the pressure of air is still there just not as strong, sat. 23rd he required ppv (bagging) so the doctors will start him back on caffeine,its just taking Jonathan a bit longer to remember to breathe. The 24th the docs decided to keep him on cpap because of his incident and we will just go day by day! The 25th I held him for 1hr on nasal cannula and he did great but putting him back on cpap was heart wrenching he turned red, cried and was so upset it broke my heart!After he was back on cpap I held him and he did o.k.Another eye exam on the 26th and his eyes are great but they do continue to watch them until 50 weeks! Jonathan needed ppv (bagging) on the 27th it actually happened when Justin and I came in his room it happened so fast, so scary! Jonathan has been seeing a o.t every day m-f for an hour she can't really do anything with him but she has showed us some exercises to work on with him because babies are born really early preemies have a higher chance of developing cerebral palsy! Well I have been holding Jonathan on nasal for 1 hour and he is doing excellent, I keep him on his belly and he has been moving his head and the o.t is very pleased that he is working his neck muscle which is a good sign. On the 29th I was holding Jonathan on his belly, his head on my chest. The o.t said eventually she would like to see him pick his head up and turn to the other side but she said since he has been on his back for so long with not a lot of tummy time its going to take time!! Jonathan however did it just as she described, the o.t was very pleased and surprised, he is such a big boy! On the 1st of March the docs increased the nasal time to 2 hours and he did great! On the 2nd the docs increased his nasal time to 2 hours 2x's a day once in the morning and once on midnights as of today the 3rd he is doing great! Oh yea he is 7lbs and 1 oz and looks cuter then ever!

Tuesday, February 19, 2008

Sorry its been so long

Feb 11-19th
Jonathan has/is doing excellent he is gaining he is now 6lbs 3ozs, he is still on cpap however it has been 1 week as of today(19th) at 5a.m with no bradys which means no bagging!!!!! He had an eye exam on the 12th and still immature which the docs say that usually if they have an eye problem we would see it by now so we hope and pray it stays that way! they have increased his milk over the last week and as of today he is up to 53 ccs every 3 hours this little guy can eat! The doctors were going to start weaning his cpap pressure down this week but he is doing really good and he is growing and his lungs and trachea are healing so they are just going to postpone it till this friday then they may start weaning him. Just today he is starting to throw tempertantrums he would fuss and we would give him his paci and he would fall asleep just to us pulling out his paci he would throw his little arms up and start crying this happened for 2 hours, he's fiesty! We also met his pediatrician today he seems really nice he actually came up to the hospital which the nurses say rarely happen so when we do go home we will have to see him the very next day!So Jonathan is doing good and we now pray that he continues to grow get stronger and come home!!

p.s
on a very sad note our favorite nurse kim will not be back for a couple weeks it has been very hard but I have been praying not only for Jonathan but also for Kim, she had a complication with her surgery and ended up in i.c.u she went home a day later however she is back in the hospital with a blood clot, so please when you pray for Jonathan tonight please include Kim she really is our angel!

Sunday, February 10, 2008

No Kim for 10 days:(

Feb 10th
I have good news and bad news, good news is Jonathan is doing great today he had a huge bm that Kim got to clean and he had a little sponge bath cause he spit up! The bad news is is that Kim is leaving us for 10 days she has to have surgery and i pray everything goes well with her but she is the only nurse that can make everything better (as Justin says"is the only one that can keep me level headed") you have no idea what she does she goes above and beyond plus she care so much for Jonathan, I know she will be back, she knows how much I depend on her! I could tell she was going to miss jonathan because she picked him up today so I could hold him and she just held him next to her and told him to be a good boy (he does listen pretty good)! Well we will miss Kim but we pray that everything turns out good and she recovers well!!

My baby shower

We had my baby shower today, Jonathan is going to be quite spoiled but thats o.k! Kim was there to take care of him during the day thats why I had my baby shower today. She really is an angel I trust her so much with Jonathan. Well the docs did a chest xray and Jonathans lungs are not expanding as much as they should so they are going to increase his peep to 7 instead of 5 and hope that it will compensate for his lung exspansion. Justin and I seen Jonathan tonight he is so darn cute he was just smiling up a storm (had a lot of gas)! Please just continue to pray that he can get off this machine soon!!

1 step forward 2 steps back!!!

Feb 8th
Well we seem to hit a speed bump! Jonathan had to get bagged at 1245am. The doctor came and talked with justin and I and said that they are going to take jonathan off canula and put him back on cpap for about 2 weeks since his apnea is not getting better. hopefully in a couple weeks we will see an improvement. So as of now breastfeeding will be halted but Justin and I both agree that this might be the best for him since he seems to be getting bagged a bit to much for as big as he is, we will just continue praying!!

No baggings

Feb 7
Jonathan is doing good today. He now has the feeding tube in his nose. He is on low setting of oxygen for both nasal and cpap! He seems to be getting bigger everyday!

Friday, February 8, 2008

Real feeding

Feb. 6th
Jonathan did have 3 baggings the last one was at 240am! He is going to try breastfeeding for 10 mins for the first time, he did great I was a bit nervous though! The docs might want to try something different with jonathan because he is getting bagged a lot he doesn't seem tired and he does come back right away after his bagging but they will discuss more tomorrow!

5lbs

He is so big compared to his 1lbs 12ozs! Jonathan did require a bagging at 12am however they are going to alternate 6hours on canulla and 3 hours cpap. Jonathan received a shot (synergis) today. This is for RSV it helps build his immune system because rsv to us is a common cold but to preemies it is deadly, so from sept till april he will get this shot every month for this season and next! The neos say by age 2 preemies immune system will be that of their peers so he won't need it past next season the other down fall is that jonathan will have to stay in the house those months and no vistors allowed because of the rsv (we have seen to many preemies in picu (pediatric intensive care) for rsv and their reintubated and have i.v's and they may not make it they are so frail) so Justin and I won't take a chance of having to be back in the hospital and see Joanthan suffer, jonathan will have many years with us so a season is not going to hurt anyone! Some family is upset because even when he comes home in march he won't be allowed visitors (according to docs) till May even then you have to be healthy and wash, wash can not exspress enough wash your hands before touching Jonathan! I love all of you but you would be just as careful as I am if it were your baby!

A good day

Feb. 4
Jonathan had a great day today with no bagging episodes! The doctors are pleased with him he just needs to outgrow his apnea, it is taking him a bit longer than most but its because he is a twin and he was very sick in the begining. he received his immunization shots and it just made him a little sleepy!

Monday, February 4, 2008

4lbs 14ozs

FEBUARY 3rd
He is getting bigger and stronger! Jonathan needed a bagging at noon today, Justin and I were on our way from church so hopefully this will be the only one! When we got there I didn't hold him I just wanted him to rest maybe at 6pm when he is back on nasal! Grandma and grandpa shigley and grandma and grandpa vollbach came up to see their big boy grandson (Ilove saying that)! He looks great and comfortable at 6pm I couldnt take it anymore i had to hold him! He did great he high satted the whole time! I had to put him back at 7pm, thats when the nurses do their rounds andthe parents have to leave it was so hard putting him back in his crib but he did good, i swaddled him and he went back to sleep! As of midnight he is still doing excellent!

Terrible scare

FEBUARY 2
I held him today and he needed to be put back into his crib because he desat requiring a bagging! I tried again about an hour later and he seemed to be great high satting and everything, then all of a sudden his body went limp and he was the darkest blue you could think, I yelled for Justin to get the nurse and I was crying so hard I stood up put Jonathan back in his crib and the nurse had to bag him for a while it was so scary, he is fine but I couldn't stop crying i just kept playing it my head I NEVER WANT TO SEE THAT AGAIN!!!!!! He is so perfect, I hate seeing him hurt or struggle! He recovered shortly after and was smiling again! the nurse practioner is not worried its just the way Jonathan is and they promise us that he will out grow it, I hope sooner than later! He has not needed another bagging, he just needs to keep getting bigger and stronger!

Alternating

Jonathan did fine during the night so we will alternate cpap 3 hours then nasal 3 hours and so on. We are continuing non-nutrative feeding and today he didn't fall asleep boy oh boy he likes it!! Kim doesn't think he will have a problem with feedings so he sould do good when it comes time for real feedings! No baggings today!

What a surprise

Jan. 31
I called this morning and Jonathan had a good night, Kim told me she had a surprise for me when I got there! When I got to the hospital jonathan was id a crib, no more isolette!! Plus he has such good gases he no longer needs his TCM (measures CO2) plus he gets to start non-nutrative feeding!!!!!!! He fell asleep during the feeding but high satted the whole time! However when we put him back into the crib he needed bagging! Jonathan doesn't like big changes all at once, he needed two more baggings so the docs put him back on c-pap and we will see how he does during the night. My little pumpkin does try very hard but this was just to much to fast!

Wednesday, January 30, 2008

ALL NASAL CANULLA

Jan. 30
Jonathan was put on nasal at 11am, when I got there I got to hold him. I held Jonathan for 3 hours he did great but then had to put him back to go pump. When I got back only 20 mins later the nurse said he had to get bagged! The doctors were not surprised and not worried however I couldn't hold him anymore today. So hopefully tomorrow if he is better I can hold him the whole day, I have been waiting for this day that I could just ask the nurse to hold him and they would get him out and I could hold him for as long as Jonathan will tolerate! Jonathan did do great I believe this is just another thing he needs to get used to and he will! He keeps getting cuter everyday, the next thing will be his transition to a crib and then breastfeeding! As of 1130pm he is still doing good with only that one bagging this morning.

Tuesday, January 29, 2008

BIG DAY TOMORROW

Jonathan had to be bagged twice today but the docs still want him off the CPAP and they are going to try it out tomorrow! I believe Jonathna will do alright because just these last couple days he actually did better on the nasal however this will be for a lot longer than just 2 hours so we sill have to wait and see!!

Big boy

January 27&28
Joanthan is doing good he is really tolerating the nasal cannula great. He actually seems to like the nasal better than cpap. The doctors want to take him off cpap 100% and on nasal canulla, so they are thinking they will do this on Wednesday! Justin hasn't been there the last couple days he has the flu so I have had to stay at my parents, can't chance getting Jonathan sick!

Sunday, January 27, 2008

Pulled out his feeding tube

January 26
He is very strong, the nurse said he pulled out his feeding tube and was just holding it, (sorry pumpkin just a little longer) so they just put it back in! I held him again for an 1.5 hours he did great but he does not like getting his CPAP back on he squirms and cries it breaks my heart! Soon enough I tell myself he will be on cannula than room air than home!!!!!!!

He's awesome

Jonathan is doing great, he is not on a lot of oxygen about 30-38%. Justin and I got to the hospital and the docs are convinced that Jonathan can handle one hour on cannula while I hold him a day. So again today I held him for 1 hour and he did great, he makes little noises, sticks out his tongue and sure toots a lot:) He is getting bigger each day!

Friday, January 25, 2008

1 hr on nasal cannula

January 24
JONATHAN IS 9 WEEKS OLD
Holy cow I came in to the hospital today, Justin couldn't make it he worked for 12 hours and needed some sleep, and was told by Kim that she convinced the doc to let me hold him for an hour on cannula, I was so surprised and he tolerated it great never had a brady and was on 50% oxygen he jusst looked at me for about 15 minutes and went into a deep sleep he is so cute. Kim put him back in his isollette and hooked him back on cpap and the little stinker (as Kim calls him) pulled the cpap right out of his nose, guess he is smarter than those docs think!! But he has to gradually wean from cpap to cannula we don't want to rush it, but it looks like next week he will be on cannula more and we can start non-nutritional breast feeding!!!!!!!!!! He is doing really well and Kim said he does not at this time have a hernia but we will still watch!

Weaned to pressure 6

Well the docs weaned him down to six and he seems to be doing o.k he did need some stimulation acouple times but it was during a feeding and getting his diaper changed but the good thing is he hasn't had to be bagged for 4 days and his bradys are decreasing. The nurse practioner thinks he may have a hernia but most preemies do but we just have to wait. Jonathan is smiling more and looking around he is just stealing all the nurses from their other patients just so they can come look at him! He is such a flirt!