Joshua David... Our Preemie Journey!

Look who's 5!!

2012-02-16T06:36:00.000-05:00

Time flies

2012-02-14T19:19:00.000-05:00

Wow, my posts have definitely gotten further and further apart. I only posted twice in 2011. Where has the time gone?
Josh is doing awesome and that's probably the reason for the lack of posts. Pre-K has been amazing. Josh is one of the only kids reading in his class but he does have issues writing so we are working on that. I ordered some things to help with him holding his pencil. Hope they come in soon, I can't wait to see if they help. one is called a claw and then the triangle crayons and another thing that you can put on the pencil. Will take pics when they get here.
We had his cardiology appointment and the subaortic membrane hasn't gotten any worse which is good news. We will have to keep an eye on it. Every year for awhile... then every 2... even as an adult they will have to check it.. so we will be good friends with the cardiologists!

Other than that things are wonderful. He is thriving and keeping us entertained every day. The cooler is "refreshing" - he is always looking for something in "particular". Here's to awesome vocabulary!!

Preschool and PottyTraining

2011-10-01T07:49:00.000-04:00

Both of my boys were late trainers. Josh just wasn't interested. Not like I blame him... honestly.. no worries.. go in your pants and someone will change you. No stopping what you are doing.. what a life! Grandma started a few times but he just wasn't ready. We tried the underwear thing, but frankly wet undies and pants didn't bother him. Neither did soiled ones. Half the time he wouldn't even tell us he wet through or had poop in there. It was frustrating. So when it was preschool time we let the teacher know that he wasn't fully trained. If we told him every hour to go, he would go, but he wasn't telling us when he needed to go.. ever. We were as trained as any parent who had a kid who didn't want to be trained. If we failed in our task, he would just go in his pants. So the teacher said, then send him in underwear every day and extra clothes. The first week was about normal. As long as someone told him, he was good. After that it was like a switch... he started telling us when he had to go, pooped on the toilet and night trained all at once. For the past 2 weeks, absolutely no accidents. I am impressed to say the least!

Preschool has been good for Josh. He needs that social interaction, however it has not been without drama! Apparently some of the girls called Joshua a cheater. I have no idea of the story behind that, I am sure this was probably not huge but with a child who has not napped (naps have been reduced as he has afternoon school) he had a total meltdown over the incident. But he has made friends and this is all good. He went into Pre-K with a head filled with knowledge already. Thank goodness for Grandma! He knows all of his colors,can count to at least 20, knows his alphabet, can spell his name and can read a ton of words. But he is having issues in the writing arena. He still scribbles and the school has noticed that he may have some gross motor issues which is no surprise. So we will work on everything that needs to be worked on but he is reading at 4 1/2 and I am so proud!

Happy 4th Birthday!

2011-02-15T06:18:00.001-05:00

Yesterday I "reminisced" about the days before Josh was born. I'll continue it here.

We had hoped for even a few more days. What's a few days in labor? The contractions weren't regular so it could happen right? Well it was not to be. They had sent me back to a regular room and we had dinner (not the best idea considering LOL) Later in the evening they put me on the monitor for a 30 minute check of his heart rate, this was all routine. They noticed that every time I had a contraction, his heart rate dropped. This is called decelerations. They thought that because there was very little amniotic fluid that when I contracted, the cord was getting compressed. They warned me that this was not good. If it happened 4 times in an hour, we were going to have to deliver. It was about 3:45 in the morning when they decided that this was going to happen. I won't lie. I cried. I was scared. We knew he was going to weigh a little over a pound. We also knew that he only had a 75% chance of surviving. But we did have some science on our side. I had gotten steroid injections as soon as we hit 24 weeks to help strengthen and develop his lungs.

C-section was the only option. This scared the hell out of me. That wasn't even in the plan, but then again none if this was. It was an urgent decision. The prep was fast and in we went. Dave was amazing. As scared as he was he was trying to amuse me at the same time. Josh was born at 4:42 in the morning. They took him away as soon as he was born. I got the "it's a boy" before he was taken to be worked on. Dave got to see him a few times before me. It would be another 10 hours before I could get out of bed and get to the NICU. What a motivator I tell you!

I wish that no parent ever has to go through what we did. And even this was mild compared to some. There are some babies that suffer terrible brain damage due to bleeding in the brain and some that have issues like CP. We have been so blessed.

Josh is now a happy, healthy 4-year old with a few minor issues that frankly are not all that bad considering where we started.

So

HAPPY BIRTHDAY JOSHUA DAVID HARRINGTON!

Valentine's Day - Not what you think

2011-02-14T06:27:00.001-05:00

Today is Valentine's Day. It's truly a Hallmark holiday. I believe you should tell the ones you love that you love them every day - it's nice to get a card or a present, but why today? Do this for me on a day that I am not expecting it... that would be better. Valentine's day has other memories for me.

Having said that, it was today, 4 years ago, that we knew we were going to have a baby at 24 weeks. I can almost remember it like it was yesterday. I had been at John Dempsey for a week already. My water had broke on the 12th. Now for some, this would be okay. This is called PROM (Premature Rupture of Membranes), and there have been some ladies who have had this for months and delivered full-term. I was the worst case scenario, I was already having contractions and had been for a week. The only reason I wasn't was because they had me on meds to stop them. Once your water breaks, they take you off those drugs. It's too dangerous, risk of infection, lots of reasons they do this. So having my water break was the worst news ever. It meant that we were having a baby. If not that day then soon. Once they took me off the meds, it was waiting. It took about 12 hours for the contractions to start again. I had high hopes that it wasn't going to happen and was deflated when it did. That was on the 12th. Dave had decided to stay home that day. There was a storm coming, and he and Arran had been with me all weekend. Contractions meant that I was going to deliver sometime very soon. Of course he changed his plans to come up. By today, we were waiting. They had me on the delivery floor for most of the day but the contractions were still not close or regular so they sent me back to my room. Valentine's day went by without delivering. One more day in utero was a blessing.

Late Christmas pictures

2011-01-27T08:54:00.002-05:00

Cardiologist update

2011-01-07T06:43:00.000-05:00

We went to see the cardiologist on Wednesday and so far so good. The subaortic membrane doesn't seem to have progressed any. The narrowing is "on the cusp" of moderate.. still mild but close to being called moderate. It's still a wait. They will see him in another year and see how it's progressing. At this point, it's just all waiting. Next visit if all is still well, I will find out what exactly this means for Josh for the remainder of his life... most likely yearly cardio visits - there is always the possibility of it progressing. We have to watch for warning signs.. fatigue, blueness anywhere, especially around the lips, unusual paleness the usual which in Josh's case, could be heart or lungs! So we wait and will update on this subject in another year!

This has been a really rough sickness season for us. Since we put Josh in daycare (and pulled him out 8 weeks later) he has had something pretty much constantly. Runny nose is the best of it. Croup and pneumonia is the worst. Off to the pedi today to find out if this is just a cold or something worse. I don't take him for everything and it's tough because I have to make that judgement call... is it bad enough to take him without being that mom who cries wolf every time. With his history I am sure no one would blame me for rushing in there every time he gets a cough, but I do usually wait to see how it progresses. When it's a Friday, I feel like I should do something because the weekends are tough to get in to see someone.. and what if it gets worse? Then if I don't take him right away and he gets sicker? See the dilemma? Anyway, that is my rant for today.

Halloween 2010

2010-11-04T06:22:00.000-04:00

Dave and I were looking through costumes back in August when Joshua saw them. I figured maybe a pirate like Captain Feathersword or a cowboy.. but Josh saw the knight and was hooked. For months we had been hearing that he was going to be a "knight in shining armor". Dave was teasing him telling him only if mama buys the costume. So I ordered it and darn it if he isn't the best looking knight in shining armor ever!

This is the first year he is really interested./excited about any of the holidays. His birthday was the first (of course he wants a birthday like... every day!). So Halloween was fun.. mostly. He went to one door, knocked, said Trick or Treat and really he was done. We did go to about 10-15 houses... but once he did it, it was done. He doesn't eat much candy so there isn't that aspect. I have really tried to keep most of that away - he loves fruit so why give candy?

Daycare is over for now. Bronchitis and Pneumonia in the course of 2 months, then he got another cold (which didn't turn bad thank goodness!) . I don't want him on a antibiotic all winter so we nixed it. It's not like we need to put him in. He has two wonderful grandparents who love him to death and take care of him every day. This was just for some social skills. He did love it, but his health definitely comes first.

So the next thing we wait for is the cardiologist in January. His pulmonologist seems to think the murmur is getting worse.. I am praying that it's not, but we will see. All we can do is wait and hope that this, like everything else is another bump in Joshua's road.

We are going away for Thanksgiving. Renting a cabin in the woods in Vermont with friends. It's going to be a wonderful time. I am sure the next post will not be until after that. So have a wonderful holiday all. I give thanks just about every day - for my friends, my family and especially my wonderful, beautiful miracles (my children). I am truly blessed. We are especially thankful at Thanksgiving. So, be thankful for all of the great things that you have in your life and try not to dwell on the negative.

Preschool/Daycare update

2010-10-22T06:17:00.000-04:00

So far it's been a great ride. I am being sarcastic here! After two days of daycare, Josh had a fever and cough. He missed the next week because of the fever and turns out it was bronchitis. Amoxicillin for 10 days. Goes back to daycare and by the following Saturday.. pneumonia. This was another antibiotic, breathing treatments and prednisone.

So, he is back in, for now, but if there is one more major illness we are probably going to pull him for the winter and try again. While I totally agree that I need to expose him to germs, I am not willing to deal with all of the major lung issues. Most kids get colds.. I could deal with that if it was just a cold. Seems all of Josh's go to his lungs (of course). Hopefully sometime in the near future, his lungs will get stronger and we won't have to deal with so much of this.

Monday night we went to the big March of Dimes fundraiser - The Signature Chef Auction. What a fun evening. Great food, great company (our friends went with us) and we also got to meet the next Ambassador Family for our walk. They are still not sure that they want to do it, but I think they are coming around! IF you ever get a chance to go, it's a really great evening and Marc (the MoD Director) is amazing. We love him!!

January we find out what is going on with the Subaortic Membrane in Josh's heart. The pulmonologist seems to think it's getting worse. I am hoping for the best and keeping my fingers crossed. She mentioned a cardiac catheter.. while this is better than open heart surgery, anything dealing with the heart scares me, so we will pray that it at least hasn't gotten worse. One of my big "issues" is that the pulmonologist can hear this, and if you listen with your ear you can hear the murmur. Yet any time Josh goes to the pedi, no one ever mentions this. Perhaps it's because it's in his chart and they know I know, but it just seems weird. And we saw a ped on-call who had never seen him, and he never mentioned it. Strange.

Well that's all for now. We'll of course update with Halloween pictures when the costume finally comes in. I am so glad that this year Josh is finally getting exciting about the holidays. This is the first year that he has really shown any interest in any of it so it should be fun!

Daycare Woes

2010-09-20T19:20:00.000-04:00

Well, Josh had his first 2 half days at daycare Thursday and Friday. By Saturday evening.. fever and cough. I had really hoped that his immune system would have been stronger, but I knew deep in my heart that we would probably be dealing with sickness. I had just hoped it wouldn't be this soon. My hope is that we get this all out of the way before kindergarten... I know that is still 2 years away but I would hate to have him miss a bunch of school. This is why we started getting him around other kids now and not waiting, although I am still wondering if putting him in at the beginning of RSV and flu season is the best decision I have ever made. If he continually gets sick, then we may have to re-think this for the winter, but I'll give it a few months and see what happens. My other preemie mom friends have said that yes, they get sick but it gets better (Jay and Syd have both been in the same boat). I'll try and be better about getting posts up. Gets much more difficult when they are older!

On a better note... Joshua has been telling everyone what he is going to be for Halloween.. a Knight in Shining Armor... he has never been really excited about any of the holidays.. this is the first.. I think Christmas is really going to be a blast this year. Before now, he hasn't been interested.. this should be GREAT!

Glasses?

2010-04-24T07:32:00.003-04:00

Well we went to the eye doctor who said that Josh's vision is great... however, he has astigmatism in both eyes (genetic.. me too!) and that because one has gotten significantly worse since his last exam she wants him to have glasses to potentially correct the issue. Astigmatism is an irregularly shaped cornea.. where most peoples are round.. mine, and now Joshua's is shaped like a football.. this causes blur and distortion in distance vision.

So we ordered glasses. Holy cow. I know how expensive they usually are and I do have some limited insurance for glasses for Josh (I have a different plan because I know I need glasses and so does Arran). So this was a shock for something he will outgrow in about a year. We should have his real pair by Wednesday/Thursday of this week.

March of Dimes walk is tomorrow. So exciting! We are the Ambassador family so I have to speak (and need to work on my speech today!).. and I was informed that I am also the PR person for the day.. me who hyperventillates during speeches? Marc is CRAZY! But I will do my best to make everyone proud.

Have a great day all. Will post more pics when the glasses come in!

No more bottle

2010-02-28T10:39:00.000-05:00

Well we fnally took away the bottle. It was time. He is 3. But I know it was for comfort and that was the hard part for me. I was surprised. No tears. We told him they were all dirty. It's been a week and he still asks for it, but doesn't get upset when we don't give him one. Problem is, he has a REALLY tough time settling down for nap and bed time. The bottle was his "woobie".. security and comfort... and we haven't found anything to replace it. We are working on it... trying to find something else for comfort. It takes him more than an hour to settle down. So big boy bed and no bottle. In a few weeks we will hopefully start potty training. I don't want to make too many changes all at once though. The potty training, while important can wait a little bit if I feel that all of these changes at one time are too much. Transition is good!

All in all though, he is doing really well. He has a great memory and loves electronics He still watches the darned Direct TV channel. That boy can recite along with the commentator and probably knows more about how to operate the remote than I do! I am certainly not worried about his cognitive skills! He goes for his 3-year physical in a few weeks so we can see where he is on the growth charts. I am thinking still in the lower end. His cousin is in the upper end and boy they are worlds apart in size. Connor is like a foot taller and only 6 months older (Actual age). But we know he is going to catch up eventually. Small men do not run in either of our families.

If you haven't donated to the March of Dimes, please consider it. We know that our little man wouldn't be where he is without it.. and of course all of my other little preemie friends who I believe we will meet someday. They are always in my thoughts. I feel a part of their lives as I hope they feel they are a part of Joshua's.

I spoke about our journey at a March for Babies kickoff. I hope that we can inspire others to join the cause. It's always a difficult speech because I feel that our journey also includes Emilee... and talkinig about her always brings tears to my eyes. She would have been 4 this year.

Anyway, be true. Be real. Thanks for reading and being a part of our journey. We love you all!

Happy 3rd Birthday!

2010-02-15T20:04:00.001-05:00

I can't believe our boy is 3. Man how times flies and I can't say that the past 3 years has been all fun. Mostly.... but not all. That first year was a ride. For those of you just tuning in, if you have a few minutes go back and check out his beginnings. for those who have been with us all along.. thanks for being there for us. We are happy that he is doing so well.

Josh is a happy boy most of the time. He is just hitting those "terrible 2's". Even that has been delayed a bit. Lately he doesn't like anything and tells you so at every turn. Things he liked yesterday, he doesn't like today and it seems like the list gets longer. He pretty much doesn't like anything! Except cake LOL. He LOVED his cake. Still not totally into the presents but that's okay. Not a materialistic boy that's for sure.

But he is growing and exploring and being a kid and we are enjoying every minute of it. He is "besides hating everything" a good natured kid. Sings and dances.. hums the Wii theme (yeah we know, that is kind of strange LOL) sings all the Wiggles songs... there is nothing wrong with this boy's memory.

So Happy Birthday my little man. We (along with lots of other people... some you have met and some are just in our hearts) love you very, very much!!

My beating heart

2010-01-20T17:58:00.003-05:00

I can't believe Josh is almost 3. 3 years ago I was on bedrest hoping for the best. Now look at him!

During the last few visits at the pulmonologist, she mentioned that she heard a heart murmur. This time she suggested we go and see a Cardiologist to be sure. So we saw yet another doctor.. Dr. Fahey (I have heard much about him and he is anther Yale doctor). So we saw him today. He took a listen and said that what he was hearing was not an "innocent" murmur... and he wanted to do an Echocardiogram which they did right there and he stood by and explained everything and what they were seeing. Well, turns out, Josh is still throwing us curveballs! He has what is called a subaortic membrane. It's better to read about it,so click on the link. Bottom line is that we are waiting to see what happens with it. It is not close to or covering the aortic valve or obstructing his blood flow.. so we are just watching and waiting. But it's yet another thing we have to think about. I am not worried, I am going to think positively. This child has beat the odds before and will again.

Other than this last bit of news Josh is doing great. Playing the Wii like a champ.. (Okay maybe not a champ but he did manage to erase all of our saved data). Watching him play sometimes is very frustrating as he doesn't like to finish one before he starts another. His sentences are getting much longer and his memory/retention is awesome. We are such a lucky family!

By the way, the March of Dimes Walk for Babies is now up and running. We are striving to be the #1 Family team again. so please help if you can Every little bit helps. Save your change for the next few months The money isn't due until the walk. Click on the March of Dimes "widget" on the side of our blog.

Love to you all!!
Dianna

Merry Christmas!

2009-12-30T15:29:00.003-05:00

Hi Everyone!

Well Christmas has come and gone. Josh was not at all interested in opening gifts. There were about 12 that didn't get opened on Christmas.. he opened a few of them after and then we did the rest because it was a chore to get him to do it. Perhaps next year he will be a little more interested!

Josh was denied Early Intervention Preschool.. yay!! Seems our boy is not behind as far as they can tell. That is due to a lot of hard work by my MIL.. she has a preschool teacher background and does work with him in many of the areas.. of course so do we at home. He is doing amazingly well considering all that was stacked against him!

He has to see a cardiologist this month. The pulmonologist has heard a murmur the last few times that we were there and just wants to get it checked out. It could be that his PDA never truly closed all the way... or it could just be nothing. I am not overly concerned at this point and we will just hear what the cardio doc has to say.

Everything else is good. Josh has an amazing vocabulary.. he loves to watch the DirectTV instructional channel... (they go over all of the controls for the remote control). I think he knows how to work it better than we do. I think he was fixing it... he loves fruit and not too fond of candy (thank goodness) and his only vice is Dunkin Donuts Munchkins... he is so-so about veggies.

He took a hammer to our big screen TV.. we are not thrilled but know that it wasn't on purpose.. boy do I miss HDTV!!

Hope you and yours had a very, merry whatever you celebrate!!

Happy Halloween!

2009-10-31T09:03:00.002-04:00

I'll of course have pictures later. Josh has some new words... he likes the big ones and they seem to be associated with food now that I think about it! 'delicious' is one and the last one that grammy taught him was 'scrumptious'! He likes to eat what he likes to eat. Any parent knows exactly what that means. Some days he likes it, and the next day he won't eat it. Still my carb freak...bread, pasta and loves his fruit which is good. He is still on the small side, but I have no worries there! His big brother is 6'1" at 15 so I think Josh is going to be just fine!

We went for a preschool visit last week to prepare for his PPT coming up next week. The teachers think that he is not going to qualify for any extra services. They won't know for sure until the PPT is done, but that is the preliminary evaluation. This is great news because it means that they don't think he is behind in any areas, but sucks because I was hoping to at least get him into preschool for a few days to get this boy some social skills. He is with grammy and grampy every day which is a great thing (I don't know what I would do without them!!) and he occasionally plays with his cousin and one of my MIL's sisters grandson's but never in a group. Although we wouldn't do anything until next April after flu and RSV season is over. We have a daycare program at work and I can see if I can get him in there a few times a week then.

This is the first year he hasn't gotten Synagis which is a good thing, he has a HUGE fear of doctors right now. Doctors on television make him cry poor little man. We are having a hard time getting the H1N1 shot, although he did get his seasonal. His ped has the flumyst version which Josh can't have because of his chronic lung disease. He must get the shot and with the limited production it's tough to get. My ped doesn't have a waiting list for those who are considered at risk, it's first come, first serve and I have to call every Friday to see if it came in. What a pain. But we will keep trying. I also called the pulmonologist to see if she had any. Nope, so we got on a list there. He is on lockdown now. We just don't want to take that chance. After the pneumonia/RSV he had in January, I really don't want to see him sick again. our hospital has put a visitation restriction on for anyone under the age of 18 or if you have flu symptoms. Some people are not that smart and will go out with the virus and infect everyone else. Hopefully this will die down eventually.

So that is our latest update. Nothing really new. Will post Halloween pics later. He is a puppy again because his costume still fits from last year( I hope!!). A friend from work made his this adorable trick or treat bag that looks like a milk-bone... LOVE it!

Summertime

2009-08-20T16:47:00.002-04:00

Summertime is almost over. Josh loves water play... Grandma has a little pool and water/sand table that he spends lots of time with.

He is now hitting those "terrible twos". NO is a common word, and the throwing of the fit when he doesn't get his way.. we LOVE that. But, he is starting to learn that it still doesn't get him what he wants. I am easy for some things, but I don't want a nasty spoiled child.

Overall though, he is a pretty happy child. LOVES his grandpa and brother more than anyone else. Likes Sprout TV and will ask for it even when he is half asleep.

He still has a bottle at nap and bedtime and will try to get it at other times, but we try to hold fast to that rule. Of course when it's hot as heck and he is not drinking a lot from the cup we sometimes give in and let him have it in a bottle because we know that he will drink more that way. I know that there are some that say he should be off it by now... and to them I say... phooey! He will give it up sometime.

Potty training has been talked about but I really don't feel that he is ready yet. Maybe before he turns 3.. maybe not. Others sometimes forget that he is still a few months behind. Now that he is doing so well, they stop thinking about the delay, but we know it's still there.

He is talking up a storm and I thought he was beyond his age, but then I see some that are around his age that are talking so much more or better and I realize too that he is still behind a bit. BUT he has come such a long way since his birth that we are proud of every little thing, every milestone. Who would have thought a few years ago that he would be where he is today.

I think the only issue we really have is that he has to have Miralax nightly. Otherwise he has really painful BM's. I think that's a small one compared to others. He eats pretty well but he is definitely a carb lover. Loves his pasta... mac and cheese, ravioli, you name it if it's pasta he will eat it. The rest depends on his mood. And bananas. We of course have to limit those as we have enough issues with constipation!

So there you have it. Our latest update. I will TRY to be a bit better. I have been really slacking lately. Until then....

June

2009-06-06T15:21:00.003-04:00

It's been awhile. Mostly because things are uneventful.. that is so good for a change! We have had a good few months. Josh loved the Easter bunny... I think he thought he was a big stuffed animal.. he kept trying to go back. It was pretty funny!

He had been downgraded to mild chronic lung disease at his last pulmonary visit. She thinks he is crusing right along. We will continue to see her for awhile I am suspected to be sure that nothing crops up later.

At our next IEP eval the Physical Therapist is going to discharge him I think. She is a friend of ours and has stated more than once that there really isn't anything more she can do for him at the moment. He is meeting all of his milestones. We will get evaluated by the school system juset before he turns 3 but without IEP I am sure they are going to deny services. We'll have to see. I think he will just be in a regular pre-school setting which is more than we could have ever hoped for. Who would have thought 2 years ago that he would have come this far.... we are truly blessed and I am thankful every day!

So there you have it. There really isn't much going on. We have a child into the "terrible" two's but really, with all that he has been through a little obstinance isn't bad. He is really a good child most of the time, just inquisitive and getting truly brave and into everything. He knows what he likes and doesn't like and isn't afraid to let us know!

First Official Haircut

2009-03-15T08:25:00.006-04:00

Well it was time. I gave him a bath the other night and realized just how long it really is. When it curls it doesn't look as long, but it was, and it was time. I still blamed it all on Dave LOL and pouted the whole time. The hair salon we went to caters to kids.. has the chair that are trucks or cars and videos for the kids... very cool! He hated the clippers (Arran never liked those either) and cried when she brushed off the back of his neck with the fluffy brush.

Look Elmo!!

He has also decided that he likes to sit in the fireplace. It's a fake fireplace.. not even enough room to add a gas/electric insert. Not sure what the person who created it was thinking. It's pretty but certainly not at all functional.

We had put a comforter over the stones (the hearth is all stone) and Josh decided that he wanted to sit there. So we put some of the couch cushions in there so that he would have a place to sit back.

Josh is 2!

2009-02-15T12:02:00.004-05:00

Josh is 2 today. Can you believe it? 2 years ago he was this tiny baby struggling to survive. Today he is 2.

In the past year we have met so many milestones. He learned to crawl, and then walk and he is saying many words. We are so proud and amazed every day of just how far he has come. I know all my preemie mom friends totally understand!

We had a family birthday party yesterday and today some friends. We wanted to split the germs and not have that many people all at once. He is still getting Synagis (our last year) and is just getting over a bout of something.. (could have been RSV or a touch of pneumonia) but he was pretty sick. Luckily not sick enough for a hospital visit but we were on steroids, antibiotics and breathing treatments. We count our blessings that he has not had to be re-hospitalized. YAY!

We had cupcakes and cupcakes and cupcakes! (regular, mini and cupcakes baked inside of an ice cream cone). The opposite of last year, all Josh wanted to do was to lick the frosting off of them.

A friend at work made us this amazing sweater. We wear it every day. It is so warm that we use it as a winter coat (on the days that it is not below zero!). We have had a very cold winter this year!

So without further adieu!

Josh's '2" picture

Another with a balloon

frosting on the table and everywhere else!

Yummy yummy cupcakes!

Josh's new sweater!

New pics

2008-12-31T18:54:00.004-05:00

I have been getting "crap" from my husband and friends that Josh needed a haircut. In my defense, it took us such a long time to get hair and he had those CUTE curls, I didn't want to cut them off. But I decided last evening that at least trimming his bangs so that he could see was in order.Before Christmas..... look at those curls!

Before the cut

After the cut... not the best pic and the bangs look a little better when it's parted on the side LOL but you get the picture. I'll get a better one later.

More quilt

2008-12-31T16:09:00.004-05:00

Back of the blanket... Josh's room is an ocean green/blue color. Matches really well!

Nana's tag

Quilt

2008-12-31T15:41:00.003-05:00

Background: For Joshua's shower, I had everyone draw something on a quilt square. I provided the markers and some templates but everyone could do what they wanted. A friend of mine "Nana Jill" had volunteered to make the quilt. It took about a year and a half before we finally made it, but it was completed. I may have to make another little one if we find some other quilt pieces.

So without further adieu...

More in the next upload. For some reason, blogspot won't let me upload more than 5 at a time!

Life as we know it.. has ended!

2008-11-25T09:35:00.004-05:00

Walking!

Josh started walking at Grammy's but for some reason, when he got home, all he wanted to do was crawl. We remembered that at Grammy's she gave him a spoon to hold onto.. (it gave him the feeling that he was holding something). Behold! As soon as we gave him a spoon, he was walking all over the place. Take the spoon away.. and he would crawl again. some babies have stuffed animals, some have blankies, mine... a spoon. This is Josh's Woobie. Now he is walking all over the place. It only took a few days with the spoon for him to realize that he can do it without. But it was SOOO cute!

We found out yesterday (finally) that Josh was approved for a second season of Synagis. Every preemie mom knows what this is. It's basically a booster for his immune system. It's not a vaccine and he has to get the shot once a month for the whole season, but it gives him some extra antibodies to help fight off RSV. He could still get it, and we are vigilant about handwashing, Purell and keeping him away from crowds but this will help. the part that sucks is the bigger they get, the more they get, so this could be 2-3 shots per month to get the correct dose. He is not going to be a happy boy, but it's for a good reason. He will forgive me later!

That is all the news. We are doing fine. He is a normal active baby for the most part. He gets into EVERYTHING, loves the kitties water dish (and the water in the dehumidifier), and will get into anything he can. Love the normalcy!

Hugs and kisses to all. Have a great holiday!

We have so much to be thankful for!

you know you are a parent when......

2008-11-11T19:22:00.003-05:00

Scene: In bed... Josh has just fallen asleep (haven't yet carried him to his crib). We are watching Sprout TV and Dragon Tales is on.

Me: You can change the channel now, Josh is asleep.

Dave: Yeah, I know. But I haven't seen this one yet!

And we continue to watch Sprout TV until the end of Dragon Tales.

Halloween pics

2008-11-07T06:19:00.004-05:00

We took Josh around the neighborhood but didn't do any trick or treating since he doesn't walk much on his own, can't say Trick or Treat or eat the candy. He just looked cute!

November 5, 2008

2008-11-05T06:14:00.002-05:00

Hi everyone. I have been trying to upload pictures but for some reason, it has been failing. I will try again later. We have apple picking and halloween pics to share!

We went to the eye doctor again. His lazy eye isn't any worse but no better either, so she will see us again in 6 months. Right now, we are just watching it to see what it's going to do. His eyesight is pretty sharp... he can see something on the rug from across the room.. you mommy's know, that little thing that the vacuum didn't pick up. The rug looks perfectly clean and it's the baby that finds that little item and tries to eat it? That's Josh!

We haven't heard for sure yet, but I am sure the insurance company is going to deny Synagis shots for this second season. My pedi told me that according to the documentation, he is not eligible because he hasn't been treated for Chronic Lung Disease for the last 6 months. Stupid because he is still a 24 week preemie, but the insurance companies win usually. You can appeal all you want, but they are only going to pay for what they think is needed.

My nephew was admitted to the hospital last night with pneumonia. I am not sure how he is doing. As of last night, his breathing was still sucky. So even a big full termer can get sick.. why not prevent the little man who still has lung problems (but is not being treated) from all this crap that goes around...

Josh is almost walking by himself. I have been saying that for months. Outside, he will walk on his own, but in the house, he wants to hold onto stuff still or crawl. I guess it's quicker and less work. He can stand up on his own without holding onto anything and will stand for a few minutes but he still doesn't have the courage to just do the walking without holding onto stuff. We work with him all the time, but he is going to do it when he is ready.

Everything else is coming along. He is a funny, funny baby. Sings all the time. Says about 8 words.. mama, daddy, bye, hi, arran, all done, up... I think that's it! We keep working on that too but once again, he is going to do all of that when he is ready.

I'll try and upload pictures again later on this evening. Josh was a puppy for halloween. What a cutie!

GI doctor

2008-09-23T16:43:00.003-04:00

The visit to the GI doctor went well. She is pleased with Josh's progress and has discharged us (unless we have any other issues). Since we took Josh off the Prevacid and he seems to be having no reflux issues, there is really no reason to see her. That is what we were seeing her for originally. He still has a few "poopy" issues, but she said to continue him on the Miralax for as long as he needs, usually until they are potty trained at least.

We stopped at Yale to see his team again today. We got to see a few of our favorite people, but not too many today. They were either not working or too busy to visit. It was good though. We did miss our fellows though!

Other than that, there is not too much to update. I have pictures from our apple picking weekend, but I haven't downloaded them from the camera yet. I will add them soon. Josh is still not walking, but getting braver all the time now. He does stand for a few seconds on his own before he falls over. He has finally in the last month or so, stopped belly crawling and is crawling on his hands and knees so that is a great developement! Other than that, there is nothing exciting to report which is a good thing on it's own! He is progressing at a normal pace and for that we are truly thankful!

Yay!

2008-09-09T19:55:00.004-04:00

Josh got weighed today and is 20 pounds 10 ounces.. We finally hit the 20 pound mark! He is 30 1/4 inches long. He is on the charts (5th percentile) for his height but not quite on the charts for his weight. This is for his actual age and not for his adjusted age, so that is really good considering! His noggin is also on the charts... this is also a YAY!!

He did get some shots today and that did not make him happy (but is any kid happy after shots??). All in all he is doing really well!

19 months

2008-09-07T18:32:00.009-04:00

HI everyone!! I have been really BAD about updating lately. Shame on me!

We went on a family vacation the beginning of August. There is an indoor waterpark in Massachusetts that I found. Good for me because I am crappy out in the sun.. I get sick and of course sunburned. Good for Josh too since he is a product of his parents... Irish/Swedish among other "mealy" white nationalities! He did NOT want to sit down in the water. He wanted to stand.. and of course, have someone hold his hands so that he could walk around the pool.

Josh loved the fountain at the kiddie pool. We spent most of our time there.

Look at the happy water baby!

It was a good time. We spent two days there. The teenagers took off on their own for most of the time. We rented a cabana which was a small room with a fridge so that we could put Josh's milk in there and have a place for him to nap.

Josh is still not walking but he is well on his way. Getting more brave every day, letting go but still hasn't taken any steps. He cruises around everything!

He is into self feeding these days. He hates it when we try and feed him now but there are still some things that we don't let him do himself... REALLY messy things. I did let him do pasta and sauce tonight... you can see the results! But he does love his food! We are so lucky that there are no feeding issues. Check out the curly hair! We haven't given him Prevacid in over a month and he seems to be fine without it. That means the only med he is taking now is Miralax. What a difference from when he came home from the hospital.

His latest is "hi baby". This is what I say to him when I come home in the evening. The first time he said it, Dave and I just looked at each other like "did he really say that?". Yes he did! I finally got it on video. Now it's "bye-bye" whenever someone is leaving, either the room or the house. I do have to say he is too cute but of course I am biased!

Well this is all I have for now. He has his 18 month checkup on Tuesday so we get a weight. I am hoping he has finally surpassed the 20 pound mark. He is so active these days, it's tough to keep the weight on. He sees the GI doctor the end of the month so I will update after those appointments.

P/T

2008-07-19T09:11:00.003-04:00

Josh had his 6 month evaluation with his Physical Therapist. He is still lagging with gross and fine motor skills. She is putting him at 7-10 months. While I had hoped that he would be a little further ahead, I am happy with his progress. She did say that he is progressing at a normal pace which is a good thing! Last weigh in he was 19 lbs 9 oz. We are still having some issues with chunky foods. He won't eat any level 3 foods that have chunks of vegetables. His pulmonologist said that this could be because it's smooth and chunky which is an aquired texture. He will eat toddler foods like the spaghetti rings but has a hard time with the chicken and stars (the chicken isn't soft enough). He likes bread and pasta. So we are on our way, but it's slow going.

They say that between 2 and 5 the 4 month delay won't be such a big deal. I am thinking it will be more toward the 5. He is pulling to stand more often (like ALL the time!!) but not walking yet. We are in trouble once he does. He's already into everything in his walker! He really is an amazing baby and I realize that so much all the time. There are so many other babies who haven't fared as well as Josh has. Talking to other mom's has always put it in perspective for me. I have always considered him my miracle, however, I am seeing more and more just how fortunate we are that he is doing so well and that the only problems we are having now is some feeding issues (Which aren't major) and some developmental delays which we anticipated anyway.

Life as a preemie mom really is different than having a full-termer, don't let anyone tell you differently. I don't take any of his milestones for granted. Every thing he does is a major accomplishment as most other preemie mom's will agree. While we aim toward "normal", we know that life in many cases is never "normal". But what is normal anyway? It's all in your perspective of things and how you define what normal is.

Anyway, now that I have gone off on a preemie mom tangent, thanks for reading... what did you all think of the poem below?? I loved it, but no one commented!

Picture

2008-06-28T13:44:00.003-04:00

Josh is now standing. This is Josh and Cristien... Cristien is locked in the "baby cage" and Josh is outside!

Life in Holland

2008-06-21T07:06:00.004-04:00

I got this from a preemie mom's blog and LOVE LOVE LOVE it. What a beautiful analogy. Her Blog is titled "Life in Holland" and documents the trials of her preemie son Dane. Take a look!

Here is the explanation of her blog. She read this and thought (like I did) This is my life in Holland! (although luckily Josh doesn't have any disabilities).

Welcome to Holland By Emily Peri Kingsley

I am often asked to describe the experience of raising a child with a disability-to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this...

When you're going to have a baby, it's like planning a fabulous vacation trip--to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum, the Michelangelo David, the gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The flight attendant comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do mean Holland? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed us in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would have never met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around...And you begin to notice that Holland has windmills...and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say, "yes, that's where I was supposed to go. That's what I planned."

And the pain of that will never, ever, ever, ever go away...because the loss of that dream is a very, very significant loss.

But...if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things...in Holland.

yesterday

2008-06-09T05:54:00.004-04:00

As of yesterday, Josh can now pull himself up in the play yard. From laying down to standing up. Whoo hoo! Before this, he was just climbing up Dave and I. Now he is really on his way. As I was checking my mail this morning he did it again and is now watching me and the TV from a stand. Too funny!

Ped Update

2008-06-08T14:02:00.003-04:00

Well the pediatrician thinks he is doing well. He is 19 lbs (gained 1/2 lb in 2 weeks) and 29 inches? He is one pound away from being on the charts for his actual age, and in the 5th percentile for his height (yay on the charts!!). He is also on the charts for his head circumference (I think she said 10th percentile). He is delayed for development, but we know that and is the reason why we are working with PT/OT. Ashley (PT) is happy with his progress. He is making his goals all the time. He is almost pulling himself to stand, and we have to work on his "dismount" lol... basically teach him to sit on his butt when he is falling back from standing. He is a crazy, busy baby and so stinking cute if we do say so ourselves! I will try and get some video so that you can see. If you want to come and visit, just call us. Now is the time since RSV and Flu season is over!

Mesage from Josh

2008-06-08T13:58:00.001-04:00

m, . ,mm ,jm l +699/...........ml ,m....8'..+s00............. 56/-0..mm9 m,99 ooimmmmmmmmm51 22o*********"= i0p/" nh67m uygfngfgfgfgghghgg bv*&{L

I don't know what it means, but he typed it!

GI Visit

2008-05-29T20:59:00.003-04:00

We went to see the GI doc on Tuesday and she is REALLY happy with his progress. He is 18.5 lbs and 28 inches long (this may not be accurate as he wouldn't hold still). She thinks the weight gain is great and decided that he no longer needs any extra calories. She also said that he is ready for whole milk. He is eating baby food for breakfast, lunch and dinner and eating between 4-6 ounces 4-5 times a day. She decided that we can also stop the Zantac but continue the Prevacid. On that note, since we have stopped the Zantac his appetite is already increasing. I did look it up and it can cause loss of appetite (along with constipation) I am not sure if this is it, but he seems to be chowing down. We may be able to stop the Miralax too....

We were hoping he was 20 lbs so that we can forward face the car seat. I am going to talk to his pedi and see if he is ready. Sometimes they will say go ahead when their head control and sitting up is good which Josh's is.

He is doing this funny face lately. I haven't gotten a picture yet, but he wrinkles up his nose and snorts... omg, it is the funniest thing. He is finally crawling actively and climbing... if we are on the bed he is climbing up either Dave or I to get to the headboard where he can stand up and play with the window shade (don't worry, we have secured the cord). He is going to be a crazy baby to keep up with. He is curious about everything and into everything he can reach. He chases the cat and Jake is NOT amused at all. In his walker, he is speedy and either runs after the cat or one of us.. rolling over toes in the process.

He is now waving bye-bye (to himself usually) and plays patty cake.... he does "roll it, roll it" and it's very funny... all in all he is just a very funny baby. He has a wonderful personality. We are biased of course, but he is such a joy. I have been blessed with two well mannered boys (well Arran was well mannered until he became a teenager.. don't even get me started there!). I will definitely get more pictures up soon. I have been bad again.

I'll update next week after the pediatrician's visit.

Love you all!

Update

2008-05-20T06:29:00.002-04:00

Hello all! I am not sure that anyone ever looks anymore but here goes anyway. The March of Dimes walk went really well. It was not a great weather day (dreary and chilly) but a good day for a walk since we were all sweating at the end! I did my speech and managed not to totally break down. I did choke up during the part about Emilee.. I always do. Hopefully it made an impact on people, but most of them had their own reasons for being there. Our team raised about $5,500. I will be doing it again for many years to come. We only have one picture... my camera battery died after that one shot! Thanks to everyone for your donations.

Can you believe Josh is 15 months already? We went to see the eye surgeon last week and she said the surgical part of his eyes are looking fine. She will see him in a year (most surgeons discharge them at some point!!). We have a GI appointment next week so we will get weighed (yay!) and talk about his diet and if we are going to stop formula at some point. I see her telling us that we should continue with the toddler formula's because there are more vitamins and calories. We still do the extra calories but the more he eats of the real food, the less calories he will be getting....

He is almost sitting up on his own (he does it sometimes), but does belly crawl across the floor and will crawl up and down Dave and I (pulling himself up). He got his first tooth through last week (on the bottom). He says a few words .. mama, dada, nana (not sure what that is!) some is just baby babble but we'll take it. It's so hard not to compare him with other babies his own age and even his adjusted age. He is still a little delayed for his adjusted age, but I know he is getting there. I'm not really worried, but I still get a little jealous when other babies are doing more. That's pretty much it for now. I will update after the GI appointment since we will have a weight. I hate not getting them done every other week!

I'll take some pictures and post them soon.

Love to you all!

14 months

2008-04-13T11:30:00.002-04:00

I have been bad about keeping up lately. There just isn't anything to update! Josh is doing really well. He is coming along developmentally... he is sitting up on his own for longer periods, and he is rolling lots. He may be crawling sometime soon but he knows he can get what he wants by rolling to get there so that may be good enough for him! We see OT and PT each twice a month and are working on those areas that he is lagging.

I am sure you all know that we were asked to be the Ambassador Family for the Greater Mystic Walk for Babies. It is an honor but does mean that I have to tell our story. I had a trial run at an executive breakfast and it went okay. I can't get through Emilee without crying. I'll have to speak the day of the walk. If you haven't donated... would you please? It really is for a good cause!

Here are some pictures that I took today. He is a funny boy!

Long awaited Birthday pics

2008-03-06T20:30:00.003-05:00

Sorry guys. I have been a little slow at getting the pics up, especially because I didn't take these. Thanks Chele for taking our birthday pics!

He didn't like the frosting... can you tell?

Sneaky--sneaky!

Whoo hoo!

2008-02-25T20:59:00.003-05:00

No more diuretics. Yup. We saw the pulmonologist and she said we could stop. She wants an e-ray, EKG and Echocardiogram in a month to make sure that all is well, but that's it. Two down, two to go... It's a proud day, since Josh has been on diuretics for pretty much the whole year.

Some More

2008-02-17T13:47:00.002-05:00

Josh was playing with Daddy's hat this morning!

Video

2008-02-17T09:24:00.003-05:00

Josh was amusing himself in his play yard.... no clue what had him so tickled!

One Year Pictures

2008-02-16T21:29:00.003-05:00

I didn't get a chance to take pictures yesterday so I took them tonight. Pardon the red-eye. The computer downstairs has the program to fix it and I was lazy and just used the laptop.

Look at the big boy sitting all by himself!

I think he was annoyed!

One Year!

2008-02-15T06:04:00.003-05:00

Wow. Joshua is a year old today. I can hardly believe it. Sometimes it seems so long ago, and then of course there are days when it feels like just yesterday. So much has happened in that year. 123 NICU days. Homecoming, stressing over weight gain and now a happy one year old. I look at his birth pictures all the time. I think term mom's sometimes take for granted the milestones that their babies so easily hit. We have our own milestones and Josh is really doing well considering his early start.

Thank you to all for being there for us this last year. Being our strength when we had none, sending so many prayers when they were so desparately needed. Just knowing that you were all there helped us more than you can ever know. And thank you all for being a part of Joshua's life. He is a lucky boy for having all of you.

More Pictures - Taken Feb 2, 2008

2008-02-05T19:28:00.000-05:00

Team Joshua

2008-02-01T08:20:00.000-05:00

It's the time of year for the March of Dimes "March for Babies" (formerly WalkAmerica).
We have started Team Joshua for the March of Dimes Walk - March for Babies. I have probably e-mailed most of you but I will post it here as well. We need all the help we can get. Josh and all my other preemie friends have been lucky. They are the ones who made it. There are lots who don't or who have lasting physical issues. Wouldn't it be great to stamp out prematurity? This is for all my preemies. I have links to a few that are still in the NICU.

Perhaps in the future prematurity will be on the decline instead of on the rise. More and more babies are being born prematurely. This is for the babies who have not made it, for those who have and for those who will be born prematurely in the future. We are encouraging each of you to make a donation and/or walk with us. Please let me know in advance as we are getting Team Joshua T-shirts to wear the day of the walk. Send me your size if you are going to be joining us. If not, please find a place in your hearts to make a donation. It doesn't matter how big or small. Every bit counts.

So join us. Above is the link to our team site (click on the march of dimes banner)You can choose a walker to sponsor, join our team or just donate to the team.

We need to make a difference!

Opthalmologist Visit

2008-01-31T15:56:00.000-05:00

It's amazing that these doctors can tell things just by looking. She said that Josh has astigmatism in both eyes. After reading the above article, I will have more questions in April when we see her. She also said that Josh's right eye drifts a little, which is the reason that she wants to see him back in three months. If the drifting gets worse, she will have to prescribe a patch over his left eye to strengthen the right one. All in all decent news. Will Josh have to wear glasses? My guess is eventually, although she didn't say so today. That is definitely going to be one of my questions next time. I have astigmatism in both of my eyes as well. That is probably the reason that I have worn glasses since the age of 5. So one more doctor that we get to see routinely!

Preemie Follow-up visit

2008-01-30T08:01:00.000-05:00

Josh went to his Preemie follow-up visit. Yale does two, one at 6-months adjusted and one at 18. The great news was that the "test" was performed by one of our favorite fellows Yesid. It was great to see her. They did a series of tests with toys to see where he is developmentally. It is mostly a study to see how preemies do after they get home. Josh is on track socially (go figure LOL) and a bit behind even his adjusted age for gross motor, fine motor and cognitive. Basically when most babies are reaching certain milestones, Josh was busy just trying to grow/breathe/live. They do believe that eventually (sometime before age 2-5) he will have caught up totally so that is good news.

We have he pedi opthalmologist on Thursday. Hopefully that will go well!

Jan 19 Pictures

2008-01-20T13:03:00.001-05:00

Here are some more pictures for you. I know that you like these best!

January 19, 2008

2008-01-19T18:45:00.000-05:00

Last weigh in he was 15 lbs 11 oz. He is still not on the charts, but he is getting there!

We have lots of appointments coming up. We have a first appointment with a pediatric opthalmologist. Hopefully that will go well. He doesn't see the eye surgeon again until May. We have GI again this week. She is just working on his weight pretty much. We have an appointment next week with Yale. They have a preemie follow-up clinic. It's about an hour and a half with a bunch of specialists I think who will go over his health and development and see where he is. We know he is behind in lots of things but I am not worried. He will catch up. I can see by his actions that he is going to be just fine! My insurance has now denied his home nurse visits. They say it's because he isn't homebound... okay he never was! Pediatrician is appealing that decision, but so far, no change. Sucks because she was weighing him every 2 weeks and giving him his synagis shot. Now we will have to go into the office and be exposed to even more germs. Do they even realize what that means?

So that is all that is going on. I have some more pics that I will post as soon as I get rid of the red eye!

Love to all.

Picture

2008-01-16T19:21:00.000-05:00

11 months old today

2008-01-15T19:17:00.001-05:00

Wow, can you believe it. In one month our little man will be a year old. He is thriving and doing so well. We have so much to be thankful for. Although his lungs are still fragile, he still has moderate Chronic lung disease and is dealing with GERD, we know he is doing well. We still have a long way to go. He is still delayed developmentally. He is not rolling over like he should (he does it when he feels like it!). He is a little behind even his adjusted age, but I am not worried. I know that he will catch up!

Josh has had two colds or something viral. The last one had us giving him breathing treatments every few hours to help with his cough/breathing. Luckily both times have been mild. Thank goodness for the Synagis shots (this shot is basically giving him some immunity against RSV. It's not a vaccine, but an immune booster). He gets the shot once a month to protect him. I am sure that was part of why although he has gotten something, he hasn't gotten really sick.

I have to type this part all over because Josh somehow grabbed my mouse and deleted the below passage! Little booger!

There are two preemie mama's/daddy's out there who could use some prayers. Ana and Joe had a 25 week old little boy Jay who is 5.5 weeks old. He is still on the vent and hopefully will be weaned soon and get on CPAP. He is a little fighter! http://schmetzers.blogspot.com/

Niki and Brian have Sydney who is now almost 2 and a half months old. She is just getting over an RSV infection and is doing really well. She is almost on the road home soon. I am sure her mama and daddy would love for some prayers to send the little one home! http://sydneysjourney.blogspot.com/

As soon as I get some I will post some new pictures. He is such a cutie blowing raspberries and babbling away!

I hope you all had a wonderful new Year. We are hopeful that 2008 will be a great one for us!

Merry Christmas

2007-12-25T13:21:00.000-05:00

Merry Christmas to all of my friends. Josh got lots of presents from Grammy and Grampy and of course from Santa. More than a 1o month old should have! Can you believe in 6 weeks he will be a year old? I still can't believe it! He is doing well. He has some sort of virus right now.. could be RSV, Adenovirus a plain old cold... whatever it is, it's in his lungs and we are doing breathing treatments every 3-4 hours. All in all he is in good spirits even though he isn't feeling the best. Smiles through the coughing fits. He is definitely a ham lately.... entertains us all day long! He laughs, sticks out his tongue (I taught him that.. not so sure that was a good thing lol), blows raspberries, spits and all kinds of other nice things!

Hope everyone has a safe and wonderful holiday. May you all be blessed as we have been!

Dianna, Dave, Arran & Joshua

Christmas Pictures and other things

2007-11-30T18:19:00.000-05:00

Hi all. Josh is doing really well. He is totally off oxygen (and it's official). He is still on his diuretics and will be until he outgrows it, she thinks springtime. He will be on meds for GERD (acid reflux) for awhile. He is eating well and still gaining. Last weigh in was 13 lbs 14 oz. He had his flu shots and his first synagis shot and did fine. He will not be a happy camper by April though!

Our friend and personal photographer took some pictures since we can't do things like go to JC Penney or Walmart for pictures. Of course they are amazing. She also did a collage for our Christmas cards. I won't post that one here until after I mail it out for those of you who are personal friends and will get one in the mail! But here is a sneak of the little Santa and our oldest who is starting to look more and more like a man and no longer my little boy. How time flies!

Happy Thanksgiving

2007-11-22T10:52:00.000-05:00

We have so much to be thankful for and too many to list, but I will try!

We are very thankful that Josh is here for his very first Thanksgiving. That of course includes modern medicine and the wonderful staff at both hospitals.
Josh is now over 13 pounds and still gaining!
I am thankful that we have not met our lifetime CAP for Josh and that we still have medical insurance.
We are thankful that he is now off oxygen.
I am very thankful for my family and awesome friends. I couldn't have made it this far without drugs without you all. There was a time when I really thought that I was going to need something for depression. Michele and wine helps lots!
I am thankful that I married the man of my dreams and that we went through this together and are stronger for it.
I am thankful for my son Arran. He is at the age where he drives me completely insane, but I love him with all my heart and he knows it! He also helped me make it through this without even knowing it!

So to you all, have a wonderful and bountiful day. May you stop for a second and appreciate all that you have and should be thankful for. This is not just a day to "engorge yourselves on food" as my son thinks, but a day to count your blessings and be thankful, not just today but every day.

Preemie Article Series

2007-11-17T15:10:00.000-05:00

Here is a series that has been written on prematurity. I haven't read it all, so I am not sure if it has anything negative in it.

Day 1:

Day 2:

Day 3:

November 12, 2007

2007-11-12T10:05:00.000-05:00

Well the respiratory therapist came on Friday and apparently our oximeter can be downloaded. Had we known, we would have had Josh on the darned thing! I guess it can contain lots of stuff (at least this one) so Ben is bringing a different one today so that we can do the overnight study again since we didn't really have Josh on overnight with our other one.

We didn't get weighed on Friday. Mary our nurse wasn't feeling well and didn't want to bring any cold germs with her. Same for OT today. Wendy has a sore throat and it's better that she doesn't come if she is sick.

We are still waiting on our Synagis shot. First the pediatrician faxed the prescription to my Medical Insurance. They weren't sure that they would be the ones covering it, so they contacted my regular Pharmacy Insurance and they said that they would cover it. Peds filled out all of the necessary paperwork and got it back saying that they don't cover this because it's an injectable, and that they need to send it to my Medical Insurance. Go freaking figure. I thought that was probably the case since they were the ones that covered my Lovenox injections both times I was on it, but what do I know. So now we are waiting on my Medical to send the shot to the pediatrician. I will be on them by Wednesday if I haven't heard anything.

There were confirmed cases of RSV already in October, and I would like for Josh to get his shot ASAP. As it is, the end of the month he needs to get his 9 month shots AND his second flu shot, so he will not be a happy camper. Check out this link for information on RSV.Here is another if you really want to know more about it. RSV in preemies can cause hospitalization and/or death. The RSV vaccine will not prevent Josh from getting RSV, however it could prevent him from getting VERY sick. We are doing our best to prevent him from being exposed which is basically keeping him away from places with lots of people. If my friends are sick or their kids are sick, we avoid them too. Sucks, but this is the way it is. We are avoiding the big family gatherings for the holidays for this reason.

Josh does not like the pear nectar but LOVES prune juice! So we are giving that to him to help keep him regular. He still isn't having daily poops! I think that's it for now.

November 6, 2007

2007-11-06T17:07:00.001-05:00

Josh has a "garden variety" cold. He has the sniffles and a slight cough. Doctor said his lungs sound fine. We took him in anyway just to make sure.

On a better note, Josh had his follow-up hearing test today and finally passed. We knew that, but had to get tested anyway!

The respiratory therapist drops off his oximeter tomorrow for the overnight oxygen study. Finally we may get the "official" okay to take him off the oxygen since he is already off pretty much 24 hours a day now!

Josh is 5 months adjusted as of yesterday. He is rolling over. Mostly on his side, but he has been getting all the way over to his belly! He is laughing (for certain people). Uncle Boba makes him laugh BIG, and so does Auntie Penny! Occasionally he will laugh for Mama and Daddy! So that's all for now. We have many appointments this month, so we will be updating lots! I'll take some more pictures when the baby wakes up.

Milestone!

2007-11-02T10:01:00.000-04:00

We went to the GI doctor on Tuesday and she said that we could start introducing solids. She also suggested pear nectar to make him a bit more "regular". He hasn't been pooping daily (I didn't think that was a big deal) but they would like to see a daily poop. So we tried it straight (she said not to add any water) but it was not getting through even the biggest level 3 crosscut nipple. So I watered it down a bit.

Last night, Josh had his first taste of cereal! He seemed to like it. He ate about a half a teaspoon. Doesn't sound like much does it?!

Right now he has the sniffles. I am not happy about it. We have been so dilligent about handwashing and he still ended up with a cold. We will see what Mary (his nurse) says today. He doesn't sound like anything is in his chest, but we have to watch out for that. Ugh!

There are 3 posts for today so don't miss the other pictures!

Dianna and Dave

Halloween

2007-11-02T09:57:00.000-04:00

Josh was a chili pepper for Halloween. He hated the costume and was only in it long enough to snap a few pictures. When I bought it, he was MUCH smaller. The stem (hat) kept sliding over his eyes so he was not a happy camper! We ended up walking around the block with friends(It was a gorgeous night!). He fell asleep after about 15 minutes and slept the rest of the way. have to LOVE the crisp night air! (can we sleep outdoors?? He seemed to love it!)

Promised Pictures

2007-11-02T09:49:00.000-04:00

OK here are some pictures that I promised!

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Josh likes his bebe pod!

October 28, 2007

2007-10-28T11:41:00.000-04:00

Josh is now 12 pounds! He has doubled his discharge weight. For most of the day now, he is off oxygen. We put him on for a few hours in the evening and he goes to bed with it on, but he removes it sometime while he is sleeping, probably as soon as I close my eyes and am not looking! The pulmonologist is going to do an overnight study probably the week after next to see how he does at night with no oxygen and then we will be able to take him off completely. This will be a MAJOR hurdle! We go to see the GI doc on Tuesday and will talk to her about taking Josh off the extra calories (if she feels it's appropriate), adjust his reflux meds and whatever else needs to be changed.

I know that some still read occasionally and there is a woman on one of my message boards who is going to need lots of prayers. She had her little one at 25 weeks. She is 1 lb 10 oz and her name is Sydney. Niki and Brian are mommy and daddy. So far she is doing remarkably well and we hope that trend continues. Keep them in your prayers for a uneventful NICU journey.

I will post some pictures later today.

Love and hugs to all!

Updates - 8 months old

2007-10-15T17:01:00.000-04:00

Josh got weighed on Friday... he was 10 lbs 15.5 oz... almost 11 pounds. Who would have believed it! He has had OT a few times and is doing good. Still a bit behind I guess but doing most things age appropriate (for his adjusted age). Here are some pics again. I will take some more today since he is officially 8 months old! Look at those chunky thighs!

Double digits

2007-10-01T20:42:00.001-04:00

Josh got weighed on Friday and he was a whopping 10 pounds even! As we have said before, we are thrilled with his progress. We are slowly weaning him off his oxygen. A few hours a day and he is doing fine. As long as he keeps gaining, we may be totally off by Thanksgiving.

Fall is here and in the next few weeks we will become hermits. No public places for the little guy until the end of RSV season. We will be screening visitors. If anyone is sick or even has a sick one in the family it's no visit. We don't want any admissions back to the hospital. It was a one-way ticket out of there! As much as he is looking wonderful and behaving like a perfectly normal full termer, the fact is, he isn't, and we have to be dilligent still in keeping those nasty germs away. Have a great night and we will keep you all posted. I will have some new pics soon.

Dianna

picture

2007-09-22T10:02:00.001-04:00

this is the original...

#1
#2
#3

I was playing with a new program.... which one you like best? It's all the same picture, just different edits...

Awesome weight gain

2007-09-20T20:01:00.000-04:00

Josh got weighed again on Tuesday. He is a whopping 9 lbs 3 oz. I looked back and he was 6 lbs 9 oz on August 3rd. That is almost 3 lbs in less than 2 months, holy cow! We are so pleased with the weight gain. He is finally catching up. It was such a stresser for awhile. The one thing that I couldn't control. I hope it continues, but won't get too disappointed if he slows down a bit. This large gain can't last forever!

By request

2007-09-09T09:57:00.000-04:00

It was requested that I put up some new pictures. So here they are!

It took Arran two months to actually hold Joshua. He finally did last weekend, and enjoyed it so much he asked if he could do it again! He went back to his dads for his two weeks but when he comes back we will make sure that he does it again!

There aren't many pictures of me for two reasons.. first one is I am usually the one behind the camera.. second... I hate getting my picture taken. Most are not flattering.. I have to get rid of a few of my chins before I feel better about pictures!

Here is Josh and Cristien. Note: Cristien is 3 weeks old in this pic and bigger than Josh, but Josh is catching up!

Michele took and added the caption to this photo. WE love the look on Josh's face. He was actually about to cry, but looks like it was a BAD smell!

So here you are. A few more pics. There are more to come as I took some 8 lbs 5 oz pictures that I just have to upload to the computer and haven't done yet. Maybe later!

There you go Terri!

September 8, 2007

2007-09-08T09:22:00.000-04:00

There were no doctor appointments this week except for our visiting nurse who came yesterday. She pretty much comes once a week for a weight check. Before she weighed him, she made sure to tell me that last weeks weight gain wasn't the norm and not to be upset if he didn't gain as much this week. I understand that, and was prepared for a weight gain of maybe 5 oz or so. I was at least hoping for 6 to get us up to 8 lbs. When she got him on the scale, she exclaimed.. "holy cow!". I of course had to go over there and look at the scale. It said.....

Drum Roll please.......

8 lbs 5 oz!

Wow. 11 oz in one week. I know that this trend is probably not going to continue. A normal weight gain is about an ounce a day she said, so seven ounces a week. Let's just pray for normal or better! It would be nice to see the boy catch up to where he is supposed to be at least for his adjusted age which is 13 weeks.

So that is our update for this week. I will definitely keep you all posted for those of you who still check the blog!

August 31, 2007

2007-08-31T16:43:00.000-04:00

Josh weighed 7 lbs last Thursday. We has ice cream to celebrate! Yesterday was our visit to the GI doctor..... and he weighed:
7 lbs 10 oz......
wow. I was in shock and almist in tears. The slow weight gain has been frustrating at best. If there has been any stress for me, it's been that. Not that I was blaming myself, but it is stressful when no matter what you do, your little one still isn't gaining weight the way he should. She was pleased with everything. His liver is no longer enlarged, his numbers for his bilirubin are great even though they are not entirely back to normal... all in all he is on the road to health.

Just wanted to share with you all!

August 20, 2007

2007-08-20T20:18:00.001-04:00

Josh was 6 months old last Wednesday... can you believe it?? He is now 6 lbs 14 oz... still a slow weight gain, but everyone is happy that it's at least a gain, even though it's slow. Still very frustrating but I have to take what I can get! Nothing new is happening really. Still appointments every few weeks. He will see the GI doctor next week. His color is really good, and his bilirubin is coming down nicely. I figure another month before he is totally normal!

I leave you all with another picture. I know you enjoy them as much as I do!

More pictures - Aug 13, 2007

2007-08-12T19:59:00.000-04:00

Josh and Daddy were entertaining each other!

August 12. 2007

2007-08-12T19:41:00.000-04:00

Got this really cute picture of Josh and Daddy tonight.... His last weigh in was 6 lbs 11 oz on Tuesday. Seems the oil is working. We get weighed again on Thursday. I am hoping for close to 7 lbs.... that will definitely be a party day!

August 3, 2007

2007-08-03T17:19:00.000-04:00

First of all, let me answer some questions from another preemie mom:

We are doing breastmilk (mothermilk) with an addition of the 22 calorie formula (currently Similac Neosure) to increase the calories to 27 vs. the 20 that is normal for breastmilk and normal formula. This is a formula given to us by the NICU, we just add the powder (no water) to the breastmilk. We are also giving him grapeseed oil (the nutritionist said whatever we use to cook with and that is what I use) which when we get up to the 6 mL a day will be an extra 48 calories per day. I add this to a few bottles a day. I have plenty of stored milk, however, Josh doesn't seem to like the frozen stuff and sometimes won't drink it at all! So much for all that work I did to get a good supply here! I have also had a supply problem... where I had plenty of time to pump when he was in the NICU, there is just so much time between feedings to pump. I have started taking some herbal supplements that the visiting nurse suggested, Blessed Thistle and Fenugreek. There is also a Tea called Mother's Milk Tea that has the same herbs in it and that is easier than taking the pills. It has worked to get my supply up, but it is nowhere near what it was before he came home.

We went to the pediatrician today and he weighed in at 6 lbs 9.4 oz. Slow gain still, but at least he is gaining. I asked him if the enlarged liver could be pressing on his belly and making it so that he can't take in a large volume and feels full and he agreed that yes, this could be part of the problem. There are times that he eats really well and then there are times that he "snacks".. eats 30 mL every hour or so. He is still getting the same amount of calories, just not all at once. Just takes so much time to feed him every hour! All in all he is doing well. The doctor feels that I am pretty much on top of things with the nurse (Mary is wonderful) and that we should continue what we are doing. The ideal weight gain is 1 oz a day, but as long as he is gaining, they will take whatever they get! I have also read that as long as they are happy and content between feedings then they are fine and he is definitely that! Smiling and cooing. He is such a cutie!

Some Updates

2007-07-28T11:03:00.001-04:00

Well this week had it's ups and downs... tis the story of our life! We saw the pulmonologist on Monday. She was very optimistic. She said we could start taking Josh off the oxygen about an hour a day and see how he tolerates it. She thinks that maybe in 3 months or so we will be good enough to be off of it for good... that was great news. But this is dependent on how he tolerates stuff and if he is gaining weight, which we are still having major issues with. His bloodwork was good. His levels for his jaundice are going down nicely. They aren't normal yet, but on their way. We got a referral from his pulmonologist for a GI doctor (gastrointestinal) to monitor his reflux and his liver issues. I have to call them on Monday and set up an appointment for this. Lots of doctors!

So he got weighed again on Thursday and hadn't gained an ounce. We called the nutritionist at Yale for some suggestions. We can fortify his breastmilk with more formula for 30 calories and/or add some oil to his feeds, starting very slowly. The nutritionist suggested trying the oil first. I checked out all of the oils and caloriewise they are all the same. 120 cals/TBSP. This averages out to 8 calories/mL. I decided to use grapeseed oil since I had an unopened bottle here and can use it just for Josh. The literature says its more easily digestable. We'll see! The goal is to perhaps get to 6 mL of oil a day which would be 48 extra calories per day. We are starting with .5 mL twice a day to make sure his system can take it. He seems to be doing okay with it. Tomorrow I will try 1 ml twice a day for a few days and keep increasing as he is tolerating it.

Other than that, things are well. He has his moments of baby crankiness but for the most part, he is a good baby, only cries when he is hungry/wet/tired. Lately he has been fighting sleep, I guess like all babies there is too much going on and he wants to be a part of it. It could be some overstimulation...

We have an appointment on Monday Aug 6 for Birth to 3 to evaluate him. We have been waiting for this appointment. Chances are we will have some developmental delays just due to the prematurity. I'll keep you all posted on that as well.

Well that is about it. Hope everyone is doing well! we are definitely enjoying his time at home. I have even gotten used to the lack of sleep!

1 Month Home

2007-07-14T18:32:00.000-04:00

I can't believe that it's been a month already! Things are good. We went to the Ear, Nose and Throat doctor, and he said that he doesn't think there is a problem with his ears. We will do the hearing test again in a few months.

His eyes are coming along. The areas of concern seem to be resolving. We have another appointment this week and we'll see what she says.

Josh is still having issues with weight gain. We switched formula's (we are still adding to the breastmilk to amp up the calories). He seems to be tolerating the Similac better than the Enfamil so we'll see how it goes. I still think he is having some issues with reflux dispite the meds. Our visiting nurse suggested we get into see a Pedi GI doctor and I will get a recommendation from our Pulmnologist on Monday. It can't hurt. We really need to get some weight on this boy. Once that is finally resolved it will be smooth sailing I think. He has really come a long way!

Thanks to you all for your prayers and support. They mean more than you will ever know!!

More pictures

2007-07-02T11:02:00.000-04:00

Here are some pictures that I took. Grammy H bought the bear outfit. I am sure he will hate me later for dressing him up in it!!

Home - Day 10

2007-06-27T20:07:00.000-04:00

We have had the onslaught of doctors appointments. Getting out the door takes me about 30 minutes with remembering everything that has to be attached! So let's see what has been going on.... Last week we saw the eye doctor again. There is a little concern with one of his eyes.. there is a little area of scar tissue that is pulling on the retina. She is hoping that it will resolve itself, but we are going to see her again next week so that she can keep an eye on it. There has been no discussion as to what may happen if this doesn't resolve. I forget to ask those things while we are there or perhaps I am just afraid of the answer. I will believe that it's going to resolve and we won't have to worry about that.

We saw the pulmonologist on Monday. This was also the day that Josh's reflux was acting up really bad... he had refused to eat all morning, arching his back, screaming, it was terrible! She prescribed Zantac and Reglan (Reglan empties out his stomach quicker and the Zantac is for the acid). He is feeling much better now and eating like a champ. Anyway, she is pleased with his progress but he still needs to be on the oxygen for awhile. She is also taking care of the jaundice issues. she wanted him back on the vitamins for this so 3 meds were just added for a total of 6. I have to have a chart to remember what meds he gets when! Luckily he sucks those right down in about 10cc's of breastmilk. The taste must not be that bad, or he is just tolerating them well!

Tuesday we saw his pediatrician. He still hasn't gained weight, however, they think now that the reflux is taken care of, he may start gaining. I see then in two weeks and the visiting nurses will be weighing him here at the house.

Today was his hearing test. One of his ears is great and the other is questionable. The hearing test itself is pretty cool. They want the baby asleep... they attach electrodes to his head and ears and measure the brainwaves with certain tones. They think it may just be fluid or a blockage in one ear, so we are off next week to yet another pedi specialist (Ear, Nose and Throat) to evaluate that. Next week is another three doctors, two in New Haven and one in Madison. I like the ones that are closer (some are in New London which is a decent drive). So there you have it. The latest update. Above are some pictures that Chele took. Enjoy!

Home Day 3

2007-06-19T11:05:00.000-04:00

Wow, we have been home for 3 days and two nights. I finally got more sleep last night. I am adjusting to his grunts and groans and the stupid monitor going off when he moves (It loses connection and alarms). He decided that 5am was awake time this morning, so for a few hours, we had to amuse each other while Dave got some much needed Z's. He took the 7am feeding so that I could get some sleep too. Since we have him in our room for now, it gets a little claustrophobic. It's not like we can't take him out, it's just a pain to move the oximeter. The oxygen tubing is plenty long enough to get around the whole house, the monitor has a fairly short cable so we have to move it along with him, and is more of a bother than anything. Dave is taking some daddy time so that I could take a break and check my mail! We will continue to blog when we can. Seems Dave has taken over for me!

His pediatrician seems to think that he is doing really well and said that yesterday his lungs sounded clear. No telling what the pulmonologist (lung doctor) will say when we see her. Love to you all.

2007-06-18T19:44:00.000-04:00

Day 124

6Pounds

Josh was a bit cranky today.not sure if it was trying to adjust or he wasn't comfortable in his new bed last night.Presently he is sleeping soundly FINALLY!.He had his first appt. with his pediatrician today.All seems to be well still as far as the doc is concerned so this is good.Tomorrow is the first visit from the VNA.All is well thus far and we have high hope that Josh will make a speedy adjustment to his new surroundings.We'll leave you with a couple of pictures from last night.(doctored of course by our favorite graphic artist)

2007-06-17T15:29:00.000-04:00

123 Days

6 pounds 0.6 ounces

Ladies and Gentlemen after 123 Days in the NICU

JOSHUA HAS COME HOME!!

Day 120 - 4 months old today

2007-06-15T06:25:00.000-04:00

SOMEONE who shall remain nameless, pleaded for an update... LOL. So here you go.

The plan is still for Sunday's homecoming. Things are going well except for the poor weight gain which is still a minor problem.... he is eating well, just not gaining like he should. Perhaps once he gets home in a normal environment, this will change... we'll see. His bilirubin has gone down considerably,so they took him off the two meds for his liver. They are doing his electrolytes again today (sodium, potassium, chloride and C02) to see what his sodium and potassium are doing. They were getting low the last time and they may need to put him back on those meds because of the diuretics. Low sodium can restrict weight gain as well. Oxygen got here yesterday so we are all set with that. There is a lot for the hospital to set up before he comes home, but I think we almost have it all done.

He gets his 4 month old immunizations today. It is good to get those over with while he is still there! He should be done being cranky by the time he comes home. We will let you know for sure on Sunday if he comes home! Love to you all.

Day 117

2007-06-12T20:39:00.000-04:00

I am reluctant to say the expected home date, as it could change again. Let's just say that it's by father's day hopefully. They are taking care of all of the loose ends and trying to get rid of some of his meds (if possible). We will be at Yale lots still as he has to be followed up by a Gasteroenterologist (for his liver), Eye Doctor, Ears (he had his hearing test but didn't do well because of all the noise and distractions -- I have no doubts that he is hearing just fine), pulmonologist (lungs), Surgeon. Birth to 3 will come to the house and evaluate if he needs their services. Oxygen will be delivered Thursday and he got his oximeter today (to measure his %saturation and heart rate). We will not be traveling much, we will have to take the portable tank out, and want to avoid some of that... and the fact that we have been traveling so much, it will be nice to just stay home! They have started giving him more calories, so hopefully he will start gaining some weight. Love you all!

Day 115

2007-06-10T17:03:00.000-04:00

Well the excitement was short-lived. They had talked about Tuesday, now they are concerned about his poor weight gain (he hasn't really gained any weight in a few weeks). I am not sure if, or what they are doing there to fix this. They are already adding formula to his breastmilk to boost the calories. For some reason they DC'd the MCT (this is Medium Triglyceride Chain - a fat) . We know he will be coming home on oxygen and many meds. I think part of the problem is that he is getting his meds via his breastmilk. Most of them are NASTY and he chokes down the 10cc's and is then reluctant to drink any more. He has been doing 45-60 cc's every 3 hours despite this. I have tried to breastfeed, and right now this is hit or miss. If he doesn't take it in the first few minutes, I try a bottle because I don't want him to expend too much energy and burn calories that he so desperately needs. We got his prescriptions filled for home and the pharmacy can flavor some of them so that they are more palatable so hopefully that will help when he gets home, but I want him to gain some weight while in the NICU so that he can actually get here! So we wait for him to gain some weight. Hopefully they will figure out something to help this along. This is the only thing preventing him from coming home. We don't want him to come home until he is ready, but I hate the wait after all the excitement!

Day 114

2007-06-09T07:44:00.000-04:00

I have been slacking and not updating the blog nightly. Sorry guys! Perhaps in the back of my mind I am "weaning" you all, since very soon, I won't have as much time to update. I will still, as Josh will still be facing challenges and milestones that I want to share with you all, but it won't be daily.

We got the news that he will most likely be coming home sometime next week (perhaps Tuesday). We had hoped awhile back that he might be home before Father's Day (what a gift!), and they weren't hopeful at that time that it could happen. He is doing very well, and they are starting to make the preparations for him to come home. He will be on many meds for awhile, 2 diuretics (to get rid of extra fluid), two vitamins (one of which is specifically for the cholestasis, which is the jaundice caused by the IV nutrition he was on). He will also be on another medicine to get rid of some of the bilirubin, plus sodium and potassium to make up what the diuretic depletes. He will come home on oxygen. This could be for 2 weeks, 2 months or 2 years, there is no way for us to know how long he will be on it. There will be frequent trips back to Yale to see the eye doctor, the surgeon, and the pulmonary team (for his lungs), unless they can find a pediatric pulmonary team in New London. The eye doctor is pleased with his progress. She will continue to see him about once a month for 8 months and then he will see a pediatric ophthalmologist . I finally decided to continue with our regular pediatricians as they are closer and after talking with them, they have had some preemie experience. If I decide later that I am not comfortable, we will switch then.

We had to get all of the stuff that we didn't get at the shower yesterday. What a fun shopping day! We were still in need of most of the large items, his crib/mattress and changing table, carseat and stroller, etc. I had lots of coupons and some gift cards to help out in the expense but most of it is done. I can't say that it will be my last trip to Babies R Us, but I can say it won't ever be that expensive again!

Dave is painting his room today and then it will be ready to decorate. He will be in our room for at least a month in a bassinette. I do want to be able to get all of the boxes out of my living room!

So there you have it. The update. We will continue to update in the next few days and let you know when the official date is of his homecoming! Love to you all!

Day 111

2007-06-06T21:15:00.000-04:00

Josh was 40 weeks yesterday.. YAY! He didn't breastfeed well yesterday but did a little today. They are still concerned since he has only gained 20 grams during the week so they may put him back on the high humidity nasal cannula (they put him on a regular cannula a few days ago). Today was the first mention of him coming home. It was said that it's possible that he will come home on oxygen and it could be sometime soon, but until he has started gaining weight they won't let him go anywhere, and he has to be taking all of his feeds by bottle/breast. So it could be sooner than we think or longer if he doesn't do well. So keep the prayers up for some weight gain and that he can come home without oxygen!

Day 109

2007-06-04T20:25:00.000-04:00

Gestational Age: 39 weeks 6 days
Weight: 2730 grams
6 lbs

Josh got to breastfeed today! It took him a few minutes to catch on, but he did really well. We still gave him a bottle when he was done because it's much harder to breastfeed and tires him out quicker, but we will try and do this daily so that he gets the hang of it. They adjusted the flow on his oxygen down to 1 1/2..so they are weaning him off. He is taking most of his feeds by bottle unless they think he is getting really tired and then they will do a tube feeding. The surgeon says as far as she is concerned (surgery-wise) he is ready to come home. Now they just have to get him gaining weight, and off the oxygen and he will be ready to head home. I feel that it's coming soon! (OK, soon is relative, I am figuring in the next 2-3 weeks).

Day 106

2007-06-01T20:48:00.000-04:00

Gestational Age: 39 weeks 3 days
Weight: 6 lbs

They started PO feeds today, but didn't wait for me. It made me a bit sad, but I did get to feed him tonight. They started with bottle because they can see how much he is getting and give him the rest with the NT tube so that he is still getting full feeds. Since he has been losing weight, as much as I want to try breast, I want him to get the calories that he needs to start gaining again. He took to it like a champ. No apnea, stopped sucking to breathe like he is supposed to. The first two they only did 10 cc's (2 tsp). The surgeon said to give him as much as he would take so when I fed him he took 18 cc's and only spit up a little. Good boy! So this is another step toward coming home!

Day 105

2007-05-31T20:41:00.000-04:00

Everything is the same. They still have his feeds over 2 hours, and he seems to be tolerating them well. He looks like he is having slight reflux issues, but no one seems concerned right now, as he is not spitting up. They are going to try PO feeds soon (by mouth). The surgeon says he can try any time and of course we requested that we do the first one! One of the fellows said that they may just try breast first... we'll see what they decide.

Day 104

2007-05-30T20:51:00.000-04:00

Gestational Age: 39 weeks 1 day
Weight: 2690 grams
6 lbs

They removed the broviac catheter today since they no longer need it for nutrition and it can be a source of infection. They started bolus feedings.... they will feed him 48 cc's over 2 hours and then an hour off.... do this for a bit and then 48 cc's over an hour with 2 hours off so that his belly gets used to bigger feedings all at once. This will prepare him for real feeds. He was at 21% oxygen for most of the day which is room air. All in all things are progressing nicely.

103 days

2007-05-29T20:18:00.001-04:00

Gestational Age: 39 weeks
Weight: 2735 grams
6 lbs 1 oz

Josh is doing much the same. Here are some more pictures for you!

Day 102

2007-05-28T18:37:00.000-04:00

Gestational Age: 38 weeks 6 days
Weight: 2760 grams
6 lbs 1 oz

Josh is doing well. They are adding formula to his breastmilk to give him more calories. He has dropped a few grams over the last few days, so they want to add some weight on. They are also increasing his feeds to 16cc's an hour to hopefully add some more calories there too. They have him on two other diuretics as well as sodium and potassium to replace any that is lost due to those. All in all, every day is progress.

Day 100

2007-05-26T20:17:00.000-04:00

Gestational Age: 38 weeks 4 days
Weight: 2785 grams
6 lbs 2 oz

Josh is still doing well today. They are going to start giving him a different diuretic (to replace the lasix). There are two, and the don't deplete the potassium as much and don't deplete his calcium, so this is a good thing. He has a mobile on his new crib and he seems to like it. He was watching it today when we got there. If we don't post for a few days, it's because there is no new news to post. I know you all look forward to the blogs nightly! I'll try to post, but if I don't, it just means that things are going well! Love to you all!

Day 99

2007-05-25T19:55:00.000-04:00

Gestational Age: 38 weeks 3 days
Weight: 2795 grams

Josh was moved to an intermediate step-down room.... he doesn't need as much attention now. He is up to full feeds (15ml's an hour), and they are no longer giving him TPN. This has been a major week for milestones!

Day 98

2007-05-24T21:21:00.000-04:00

Gestational Age: 38 weeks 2 days
Weight: 2815 grams
6 lbs 3 oz

Josh is doing really well. he graduated out of the incubator and is now in a big boy crib. He was so animated tonight! He is up to 12cc's an hour for feeds and the goal is 15. Then they will probably keep him on that for a bit and then try to do a bigger amount in a smaller amount of time like a real feed. It's slow and steady! Once he is finally off the TPN he will start to lose some of his jaundice (yellow color due to excess bilirubin from the liver).

Here are some new pictures....

Holding onto Mommy's hand

Looking at...........

Day 96

2007-05-22T21:39:00.000-04:00

Gestational Age: 38 weeks
Weight: 2840 grams

Josh is doing well. He has discovered his lungs and was kind of crabby tonight. He seemed to calm down when I held him. I think he is getting used to that! I hated going tonight because he was crying and upset. That definitely tugs on the heartstrings! other than that they are working on getting him up to full feeds. He is still spitting up some but not as much as he was. We didn't get to ask too many questions tonight. Our nurse was busy with a little one that was just over a pound and needed her attention more than our big guy! No worries, she responded when there were issues and the other nurses take over when his is busy. She was very frazzled today though. We felt bad for her. Have a great night.

Day 95

2007-05-21T21:37:00.000-04:00

Gestational Age: 37 weeks 6 days
Weight: 2800 grams
6 lbs 2 oz

Josh was doing fairly well today. They have him on the high humidity nasal cannula and he seems to be tolerating it very well. He was getting too much air in his belly with the CPAP. His eyes are still bothering him a bit as is his belly, but all in all he seems to be doing well. Almost back to the Josh we had before the surgeries. I am sure it will still take a bit. For those who have asked, we still don't have a timeline as to when he will be coming home. The ticker at the bottom of the page was counting down to his due date. Unfortunately, I don't think that is going to happen now. We probably won't know until the week before that he will be coming home and even then it depends on how he is doing and that could change too! So we will let you all know when we do.

Day 94

2007-05-20T22:02:00.000-04:00

Gestational Age: 37 weeks 5 days
Weight: 2850 grams
6 lbs 4 oz

Josh was finally extubated today. He seems to be doing well. They had him at 24% oxygen which is good (21% is room air). He had some air in his belly today so they stopped his feeds for a bit but started again this evening. We'll see now if the spitting up is because of the vent or it's reflux. This is finally a step into the right direction. We'll have more to post after we see him tomorrow.

Day 93

2007-05-19T21:02:00.000-04:00

Gestational Age: 37 weeks 4 days
Weight: 2900 grams
6 lbs 6 oz

Josh was doing much the same today. They didn't extubate him. They had to turn some of his vent settings up after the laser surgery, so they are weaning him today and hopefully extubating him tomorrow. They had him up to 8cc's an hour for feeds, but knocked him back down to 7 because he was spitting up most of what was going in. They will try again to bump it up, maybe after they get the tube out. Then they will know if it's because the tube is gagging him or if we are dealing with acid reflux. Hopefully it's the former. I talked to one of the doctors today and she said that the plan is to get him off the vent, get the feeds up to 15cc's an hour. Then they will try to get him to regular feeds through the tube (about 2 oz in an hour and then off for two hours vs. continuous) and then we can try PO (by mouth) feeds when he is tolerating it. Seems like such a long process, but we have made it this far!

I hope to see many of you tomorrow for Josh's shower. I wish I could have invited you all! It would be nice to see those who have been with us through the whole ordeal. Thank you from the bottom of our hearts. You really don't know how much your daily words of encouragement and prayers have meant to us. If I could, I would hug every last one of you!

Day 92

2007-05-18T16:21:00.000-04:00

Gestational Age: 37 weeks 3 days
Weight: 2830 grams
6 lbs 3 oz

Josh had laser surgery on his eyes today. After the exam, the doctor called and said that he had significant changes and that doing the surgery now vs. waiting made the most sense. If we wait, and the ROP gets worse, it can cause the retina to detach and this can be irreversible. There is no guarantee that this will fix everything. There is a 20% chance that he may still have problems. We have vision problems on my side of the family so he may have some issues later anyway, not related to the ROP. They called after the surgery and said that he did well and was comfortable. They give him medicine to paralyze him during the surgery so that he doesn't move and pain meds during and after for any pain. They also keep his pupils dilated. The surgeon said that this helps relax the muscles and minimize the pain as well.

We don't get to see him tonight as they were doing another surgical procedure on a baby at his/her bedside and we wouldn't be allowed in until sometime after 6pm. We leave by 6:30 so it didn't make sense to drive up there just to turn around and leave. Other than the surgery he is much the same. They will try to extubate tomorrow depending on his blood gas results. Hopefully they will be fine and he will get rid of that darned tube. Josh needs to stop reading the preemie book. Hopefully the next chapter is "Going Home!".