Christmas Pictures and other things

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

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

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

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

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!

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

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

OK here are some pictures that I promised!

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Josh likes his bebe pod!

October 28, 2007

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

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

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

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

Awesome weight gain

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

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

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

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

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

Josh and Daddy were entertaining each other!

August 12. 2007

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

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!