Merry Christmas

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

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!

<
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

picture

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

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!

Some Updates

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

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

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

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

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.

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)

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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!".

Day 91

Gestational Age: 37 weeks 2 day
Weight: 2850
6 lbs 4 oz

Josh is doing about the same today. A lot of agitation because of the vent. He will get his eyes examined tomorrow and then they will either decide to do surgery and take him off the vent on Saturday or take him off the vent tomorrow if she hasn't reached a decision and needs to examine him again. I did get to hold him for the first time since his surgery. He is up to 5cc's an hour for feeds and I guess they are going to increase 1 cc every 12 hours. He made good poos today! YAY!!!

Day 90

Gestational age: 37 weeks 1 day
Weight: 2800
6 lbs 3 oz

Josh is doing fairly well. They are keeping the vent in until the eye doctor examines him on Friday. She has been checking him about once a week for ROP, Retinopathy of Prematurity. This means that if it progresses (I believe he has stage 1, zone 2) then he will have to have laser surgery on his eyes. They don't want to extubate him until they find out if he will have surgery after her exam on Friday. So we wait. His feeds are up to 4 cc's (5 cc's is a teaspoon) an hour and they are holding them there because he is spitting up some. This could be because the vent gags him or it could be reflux. There is no way to tell at this time. He is still getting lasix for his fluid and they are giving him morphine and ativan to calm him down since the vent is stressing him out.

Day 89 - 3 months old

Gestational Age: 37 weeks
Weight: 2710 grams
6 lbs

Not much other news today. Just the poop news which was a good one. He is fighting the vent. Hopefully they will extubate him soon. He is getting 2 cc's of breastmilk an hour through a tube into his stomach. They will increase it 1 cc every 12 hours. All in all, nothing much new since this morning.

Morning Update - Day 89

*******News Flash*******

We have poops!! YAY! called today and got the update... he has good bowel sounds and poop in the diaper. Wow. Never thought I would be so excited about poop! They started feeds back last night... still through a tube into his belly but soon we will be able to orally feed.... can't wait!

Day 88

Gestational Age: 36 weeks 6 days

Josh is doing so-so today. They gave him lasix and he finally lost much of the fluid weight, but in doing so, his potassium was really low so they gave him some extra to get that up along with the extra that was in his TPN. Low potassium can cause other issues, one of which is constipation/no bowel movement so they want to get this up. They had started some gavage feeds today, but stopped them until they get the potassium up. They will probably start them again tomorrow. His back is much better and he seems to be getting pissed off at the vent so this means he is feeling better. We were told that he is probably going to have reflux issues and that this is normal for a preemie and for having the surgery.

Day 87

Gestational Age: 36 weeks 5 days
2940 grams
6 lbs 8 oz

Josh is doing well. They took him off the morphine drip and have it PRN (as needed). They started his lasix again for fluid and his back is looking much better. They did the contrast study today. They will have to take a few more x-rays to make sure that it goes all the way though. All in all a good day. Hope you all have a great Mother's Day!

Day 86

Gestational Age: 36 weeks 4 days
Weight: 2810 grams
6 lbs 3 oz.

As you can see Josh has gained some weight, a lot of which is fluid. They gave him lasix yesterday to get rid of some of the fluid but today his potassium was low (diuretics can deplete your electrolytes), so they are giving him some extra potassium before they give him any more lasix. The urine catheter was removed last night, and they are weaning him down on the morphine and he seems to be tolerating it well. They lowered some of his vent settings again today. Dr. McKee wants to do the contrast study tomorrow or Monday. Every day is a day closer. He is still very sleepy due to the pain killers, but that should get better in the next few days. Lot of love to you all!

Day 85

Gestational Age: 36 weeks 3 days

Josh was doing better today. He had less fluid and they had adjusted his vent settings down. They did adjust his morphine to a lower dose but had to bring it up a bit as it wasn't managing the pain like it should. All in all, it was a better day. I am sure every day is going to be better for him and for us.

Day 84

Gestational Age: 36 weeks 2 days

Josh is doing better in some ways and worse in others. He is breathing better. I think the threat of the oscillator made him want to behave. They have decreased his vent settings and he is doing fairly well. He really has blown up like a balloon. Because of the fluid gain, the skin on his back is breaking down and he has some splitting of the skin there. They are trying to rotate him on his sides to alleviate pressure on his back and let that area heal. He looks like he went a few rounds with [insert any famous boxer name here] . Picture at the bottom. Brace yourselves. This is not the adorable little man that we put up here a few days ago. Dr. McKee, his surgeon is pleased with his progress so far. The fluid gain is not unreasonable and less than she thought. She thinks by Monday they will do a contrast study to make sure that everything is healing well before they start feeds. They finally were able to manage his pain at about 10pm last night. They started a morphine drip vs giving him a dose every 3 hours and he is much more comfortable and able to be still and heal like he needs to do. So that is all for today. Dave and I both feel better today and think that although he looks like hell, he is on the road to recovery.