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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.

Day 83

Gestational Age: 36 weeks 1 day

Josh is having a rough day. They did tell us that he may get sicker before he gets better but it doesn't make it any easier. The next 24-48 hours are probably going to be the worst.

He decided to extubate himself today. Unfortunately, he isn't breathing on his own yet and they pretty much had to resuscitate him. The fun part (if there can be a fun part to that), is that his hands have been in socks all day to prevent this sort of thing... he worked the vent out with his tongue. Definitely not a good start to his day. They are trying to manage his pain and are thinking about putting him on an oscillator vent... this is a shaky thing... his blood gas numbers are not good, and I guess this will help to get rid of the carbon dioxide. He got some platelets today and will probably get another transfusion. He was looking mostly comfortable when we left but we know there are going to be a few long days ahead for him and us.

Day 82

Gestational Age: 36 weeks

The surgery went well. They were able to place a subclavian broviac, do his circumcision, and repair his ostomies. She also removed his appendix. Basically she said that it was now in a bad place, and that if anything ever happened later, another surgeon would have a hard time finding it and removing it. So now it's the wait to see that everything heals and is working. A week is what she said so that is what we will be waiting for. They took him down to the OR without oxygen which is a good thing! I think he will have an easy transition back to where he was. They are expecting to have to increase his vent settings over the next few days so that he doesn't have to work too hard. He is still on antibiotics and they say that he will most likely get a lot of fluid again so I won't be posting his weight for the next few days. I think that's all. Continue the prayers, he will be needing them for the next few days.

Day 81

Josh was wide-eyed and so feisty today! We talked to the surgeon and they are going to take him in late morning. The surgery should take about 3 hours. They are going to do the re-attachment, insert another catheter, and circumcize him all at once. They don't think he has a hernia now so they are not touching anything there. After the surgery he will be intubated again and that will be a few days before they can take that out depending on how he does. It could take 1-2 weeks before they try feeds it all depends on when he is pooping. Not sure what else to tell everyone. It's going to be a long journey again, but this time, it's all part of getting him home.



We are going up early and will be there until later afternoon, early evening.



Here are some pictures from today.

Day 80

Gestational Age: 35 weeks 5 days
Weight: 2320 grams
5 lbs 3 oz

Josh was doing really well today. They have him back on nasal cannula and he was having very few desats. Uncle Boba (Paul) and Aunt Dawn got to come and see him today for the first time! He is off two of the antibiotics and will continue to be on a low dose of Ampicillin until sometime after the surgery.

Day 79

Gestational Age: 35 weeks 4 days
Weight: 2280 grams
5 lbs 1 oz

Josh is doing really well. We spent a few hours up with him today and Arran went in with us as well. They are still planning on Tuesday for his surgery. He is maintaining his body temperature and they have his isolette on regular outside air temp and he is doin well. All in all he is doing just what he is supposed to be doing.

Day 78

Gestational age: 35 weeks 3 days
Weight: 2300 grams
5 lbs 1 oz

Sorry for the lack of post last evening. We came home, had dinner and went to bed! Josh is doing great, and there was really no news. Until we talk to the surgeon and get specifics on the surgery, we are just waiting for Tuesday. I will post again later after our visit with him.

Day 77

Gestatational Age: 35 weeks 2 days

Josh is 11 weeks old today. Seems like yesterday that he almost fit in the palm of our hands, and now he is growing to be such a big boy! He still had some fluid today, so they gave him some more lasix, hopefully that will take care of most of the extra fluid weight. He was up to 5 lbs 7 oz at one point. Yesterday's weight that was posted was really today's so I didn't put a new one up. We will do that tomorrow. The extubated him today and he looks way more comfortable. He is once again on CPAP. He has found his little voice (although it's a bit strained right now from the tube). His surgery is scheduled for Tuesday. We are excited and scared all at the same time. It's a huge milestone for him and will be a definite move in the right direction. We can't wait until he is eating on his own!

Day 76

Gestational Age: 35 weeks 1 day
Weight: 2320 grams
5 lbs 2 oz

josh looked much better today. They gave him an extra dose of lasix and he peed 140cc's.... what a good boy! His fluid weight went down considerably. He was up to 5lbs 7 oz so this seems to be a little more realistic. Some is probably still a little bit of fluid, but he looked much more like himself. They were waiting until tomorrow to extubate him as they wanted to get rid of some of the fluid first. We are still not sure what day the surgery is scheduled for, but they are still saying next week so that is a good thing.

Day 75

Gestational Age: 35 weeks
Length: 18 inches

Josh seems to be doing much better. They are planning to extubate him possibly tomorrow. They don't want to keep the vent in too long and his surgery is still about a week away (we are not sure of the date yet) so they want to get it out as soon as they can, and re-intubate when the time comes. His weight is still mostly fluid, as I said he won't lose it as quick as he gained it. I'll start updating weight soon.

I forgot to add that the cultures that they took urine/blood are both negative. They will continue the antibiotics for 10-14 days.

Day 74

Gestational Age: 34 weeks 6 days

Josh seems to be doing better today. I hope we are on the downhill side of the infection. They did another blood culture today and hopefully this one is negative. He hasn't lost any of the fluid weight, but they tell us that it will be slow to lose it now that he gained it.

I do have to ask for some more prayers. My brother-in-law has been battling lung cancer and I just found out that my older sister was diagnosed with breast cancer this week. So while you are praying for Josh, please add Bill and Debbie to your prayers.

Day 73

I am not going to post Josh's weight today. He gained another 7 oz or so overnight. The fluid gain is mostly caused by the infection and they are sure that he will lose most of it once the infection is taken care of. They switched his antibiotics today and also removed the broviac catheter, and gave him a dose of lasix. They did more cultures and the infection wasn't going away. They will give him nutrition through an IV line for a few days, and once the infection is clearing up, they will try to insert a PICC line instead of another broviac to better handle the amount of nutrition that he needs to be on. They are planning to do his surgery as soon as next week if the infection clears up. There are more reasons to get it done than not at this point, since delaying it, can cause other issues like infection and liver problems due to the IV nutrition. We will know more in a few days. They will leave him on the vent until after the surgery since they would have to put him on it anyway. He is still not himself and I hope that over the next few days, everything clears up and he is feeling better. Keep up the prayers.

Love to all.

Day 72

Gestational Age: 34 weeks 4 days
Weight: 2210 grams (up 140)
4 lbs 14 oz

Josh is still gaining fluid. They have stopped the lasix while he has the infection and this affects his breathing, so weaning him off the vent isn't going to happen any time soon. They did another transfusion today and found out that he also has a urinary tract infection so they have to add another antibiotic to the mix. He is still very lethargic and sick. Hopefully he starts to feel better soon. He fights the vent... I am sure it's very uncomfortable and makes him gag. This is the first time in a long time that we have had a setback and it sucks to see him so sick and not be able to hold him and comfort him. Right now, all he wants is to be left alone. With all of the weight gain, the poor boy has no neck... chin flows into chest! I just feel so bad... I want so much to be mommy right now, and I can't.

Day 71

Gestational Age: 34 weeks 3 days
Weight: 2070 grams (up 30)
4 lbs 8 oz

Josh is doing a little better. He was a little more feisty tonight, he opened his eyes and was sucking on the vent like a pacifier. The did more blood cultures and the infection isn't gone yet. They will do another one tomorrow. IF the infection in the line (Broviac) isn't gone they will have to remove it and insert another one. Yet another surgery so lets hope the antibiotics do their thing and they don't have to do that. Overall, he is doing much better. Not back to his usual feisty self, but getting there.

Day 70

Gestational Age: 34 weeks 2 days
Weight: 2040 grams (up 80)
4 lbs 7 oz

Josh is doing "okay". He is still really tired and lethargic and letting the vent do most of the breathing. One of the cultures was positive but they had already started the antibiotics (gentamicin and vancomycin) this morning. His blood pressure has been good but he is still having desats and some heart rate drops. This could be because the tube gags him or because he is just sick. Just overall a crappy day for the little man. This will delay his surgery, as they won't do it until the course of antibiotics is done in 10-14 days. So now it's just waiting for them to do their thing and him to get back to his old self.

Morning Update

We got a call this morning at 4am. They had to re-intubate Josh last night. Dave took the call so I don't know if I got all of the information correct but here goes. He had more heart rate drops and one that they had a hard time recovering him from. Iris (one of the fellows) said that sometimes babies with chronic lung disease have something like asthma attacks so they gave him some albuterol which helped a little but not enough. They gave him more lasix but came to the conclusion that he was working way too hard and because the heart rate drop took awhile to get better they thought it was best to put the tube back in for a short time. They did a septic workup (just in case he has some low grade infection) to rule that out as a cause for his issues.

Day 69

Gestational Age: 34 weeks 1 day
Weight: 1960 grams (up 110)
4 lbs 5 oz

Once again Josh has gained a ton of weight overnight. They are thinking again that its fluid and once they weight him tonight, may give him an extra dose of Lasix to get rid of the fluid, especially because he seems to be working harder to breathe. He is still having desats and heart rate drops. God I hate those. Doesn't do them much and then mommy holds him and bam... 3. We think he is just getting too relaxed and really forgets to breath! He is just getting cuter and cuter every day though. I can sit and stare for hours. I do that for the hour and a half I get to spend with him and really hate leaving. I know I have said that before... but it's true... gets harder and harder every day... so only 40 grams to go (if that is real weight, which I doubt) before they consider surgery.... we will definitely keep you all posted!

Love to all.

Day 68

Gestational Age: 34 weeks
Weight: 1850 grams
4 lbs 2 oz

Josh is doing the same today. He had less heart rate drops but is still having some, and of course the desats... but all in all they like his progress. I do believe they had no heat going on in the isolette which would mean that he is maintaining his body temp... I'll check for sure tomorrow. That would be test #1!!

Big Brother

I just wanted to answer the questions about Arran. He got to see Joshua two weeks ago during a "one time" visit until the flu/RSV rule has been lifted. He was a typical 12-year old boy... he went in, looked at him for a few minutes, and then was ready to go. He was afraid to touch him, so he didn't even put his hand in the isolette. I think for him, just seeing him was enough... he now knows that he is real. It's tough I think for him. He hasn't told many people that he has a little brother, perhaps that is protecting him from having to explain if anything were to go "wrong". He had just started to tell his friends that he was having a little sister before we lost Emilee so I think it's just easier for him to not say anything. His two closest friends know. I know he is excited to have him home where it will all be more real. He will get to come in again when he is back and I think we'll wait for him to come in until after we have him out and I am holding him and then he might want to let Josh hold his finger. It's a lot less intimidating when he isn't in the isolette!

Thanks for being concerned about the other man in our life!

Day 67

Gestational Age: 33 weeks 6 days
Weight: 1870 grams
4 lbs 2 oz



Josh is doing about the same today. Still having some (bradycardia) heart rate drops and apnea, but they don't seem overly concerned, just keeping an eye on him. They are adjusting his caffeine level to his new weight. All in all, it's just waiting and growing. I am going to attach new pictures that we took last night while we were there. He is getting so big!

Day 66

Gestational Age: 33 weeks 5 days
Weight: 1810 grams
4 lbs

We did some K-care today, but Josh didn't tolerate it well. He either didn't like it or liked it too much (too relaxed to remember to breathe), but whatever it was, he had 3 heart rate drops while I was holding him, so it was back in the "box" with him. They will keep an eye on those. It could be not enough caffeine or lasix or an infection. We just have to wait and see. Other than that, things are the same. We are waiting patiently for his weight to be up enough for the reversal!

Day 65

Gestational Age: 33 weeks 4 days
Weight: 1810 grams
4 lbs

Josh was doing great today. They switched him from CPAP to nasal cannula today. He seemed to be doing pretty well with it. He had a few apnea episodes while we were there, but all in all it went well. No other news today except he is gaining steadily! Whoo hoo!

Day 64

Gestational age: 33 Weeks 3 Days
Weight:1760Grams(up 10)
3 Pounds 14 Ounces

Sorry for the late post all.We were beat and all we wanted to do was go to bed.Josh was doing well.He's still on room air and his sats were doing well.Only a couple of pulse drops when he forgets to breathe but that's to be expected still for his age and they are few and far between as far as we can tell.The doctors still like his progression and there is talk of trying him back on the nasal cannula as early as this weekend to see how he does this time so that is a good thing.Other than that everything is status quo.No changes have been made except they weaned him down on his settings on the vent again.Gotta love the power of prayer and positive thoughts.I'm sure its because of all of you that he is doing so well!
Thanks and love to all,
Dave and Dianna

Day 63

Gestational Age: 33 weeks 2 day
Weight: 1750 grams (up 30)
3 lbs 14 oz

Well the doctors are not too concerned about the weight gain. It could be some fluid retention, but as long as he is breathing well they don't want to increase his Lasix as that can cause problems with his kidneys. He had his last contrast study done today and as far as we know, they all look good. So now it's waiting for his weight to get up there and they can do the ostomy reversal. Everything else seems to be fine. He has been breathing on room air (21% oxygen) the last two days. This doesn't mean he is breathing on his own, it just means that it's the lowest possible setting on the CPAP.

Day 62

Gestational Age: 33 weeks 1 day
Weight: 1720 grams (up 50)
3 lbs 13 oz

We are not going to see Josh today... I hate not going, but Dave and I decided that we needed a night of not driving to re-charge. We are both burned out, and as much as we hate it, we know it's the thing to do. We have only missed two other nights besides tonight in almost 9 weeks, and that was because of bad weather. I have called the hospital a few times today to check in and he seems to be doing better today according to the nurse.

Josh has gained 150 grams in 3 days. They don't seem too concerned but I am going to ask the doctor tomorrow if this is something to be concerned about. It's a lot of weight in a short amount of time. The last attending said that they were aiming for 20 grams a day... this is significantly more than that! He does get another dose of Lasix tomorrow so maybe that will help the fluid along.

Last I talked to the nurse she was going to give him his last vaccine today. Hopefully that will go okay. I don't remember Arran getting 3 vaccines all at once, and they combine more now than they did 12 years ago!

Day 61

Gestational Age: 33 weeks
Weight: 1670 grams (up 40)
3 lbs 11 oz

Josh has gained a ton of weight which we are assuming is fluid! He got transfused again today and then a "chaser" of Lasix (diuretic) so he should be down a bit at tonights weighing. He had his contrast study today but so far we didn't get the results yet. He was very cranky this evening, crying more tonight than we have heard since he was born, but for tonight I am going to assume that it was because he is bloated, had his contrast and perhaps his leg is still sore from the vaccination. They didn't give him #3 today but I am sure that is coming (it hadn't come down from the pharmacy when we left). So that is that. Another not so hot day for the poor little man.

Day 60

Gestational Age: 32 weeks 6 days
Weight: 1630 grams (up 70)
3 lbs 9 oz

Wow. We have been doing this for 60 days....

Josh had a bad night with lots of brady’s/desats, so they gave him his Lasix early, did a caffeine level which was a little low so they gave him an extra dose of caffeine today and adjusted his daily dose. His weight was 1630 last night, so he was puffy in the cheeks like we thought and he should weigh less this evening! Lynn also got an order for Tylenol since he had his shots yesterday and his leg is red and looks sore so she will give that to him around noon. She thinks that all of this combined made for the bad night last night. He was doing much better when we saw him. A down day but we have to expect to have some of those.

Day 59

Gestational Age: 32 weeks 5 days
Weight: 1560 grams
3 lbs 7 oz

Josh was doing much the same today. He got two vaccinations, so he probably wasn't feeling his best although the nurse said he didn't cry at all when she gave them to him... he slept most of the time that we were there, but he did open his eyes a few times toward the end of our visit. We were told by those that worry to put in here that since he is doing well most of the time, if we happen to forget to update, that no news is good news!!

Love to all!

Day 58

Gestational age: 32 Weeks 3 Days
Weight: 1530 Grams
3 Pounds 6 ounces


Josh is doing well today.Still a couple of desats and Bradycardia episodes but mostly when you mess with him(He gets that from dad.Damn the gene pool).The doctors are happy with his progress.They figure he's averaging 20 grams a day which is at the high end of what they are looking for which is 10-20 grams a day.He has a busy week coming up.He is scheduled for his vaccinations and round 2 of the contrast tests .Keep your fingers crossed that all goes well with the contrasts.Other than all of that not much has changed which is good.He's still hovering around room air plus or minus a hint of Oxygen when he needs it.That's all for today.Thanks to all for your continued prayers and support!
Love to all,
Dave and Dianna

Day 57

Gestational Age: 32 weeks 2 days
Weight: 1510 grams
3 lbs 6 oz

Seems his weight isn't getting lower, so we are just going to assume that he is really 1510 grams. Yay... bigger is better in this case! Josh was doing about the same today. Still mostly on room air, desats are minimal. He still has some bradycardia episodes but not a lot, so mostly boring which is still good. We are pleased with his progress so far and look forward to continued progress. Anyone know of an inexpensive place to buy a chest freezer? We are in need of a second one for milk storage... I can't wait until the boy is reattached and consuming more of our store of milk!

Day 56 - 8 weeks old

Gestational Age: 32 weeks 2 days
Weight: 1540
3 lbs 7 oz

Josh's weight didn't go down considerably, so they gave him Lasix on his "day off". Hopefully some of the fluid weight will be gone and we will have a more realistic weight. Josh was doing well today being on room air (21% oxygen) most of the day. Nothing else new and exciting. We like boring days. He is 8 weeks old today... seems like yesterday and forever all in one!

Day 55

Gestational Age: 32 Weeks 1 Day
Weight: 1550 Grams
3 Pounds 7 Ounces

First off ,we know you guys are all saying.Holy Crap 4 ounces in one day.,it can't be.Well you're likely correct.He got his every other day dose of Lasix this morning and a lot of the gain is probably due to fluid weight that it hasn't taken care of yet.We will have a more correct figure tomorrow.Josh is doing well today.He was on room air(The normal amount of oxygen you would get breathing plain air)today when we got there.No major problems today.As says our nurse Lynn.He was a good boy today.The desats were to a minimum and his mom broke him out of his jail cell today so of course new pics will be forth coming(go figure).He went through the first of 3 rounds of contrast tests(where he swallows some Barium and they view its tracking) today.He passed with flying colors on this one.No perforations in sight.Other than that not much has change.No gnus is good gnus(sorry cartoon references from childhood are hard to pass up).Thanks to all again for the words of encouragement and the prayers.We appreciate every one of you!
Love to all,
Dave and Dianna

Day 54

Gestational Age: 32 weeks
Weight: 1460 grams
3 lbs 3 oz

josh seemed to be doing much better today. They discontinued the antibiotics. We also found out that they are going to start the contrast studies that they need to do for the ostomy reversal. They will do one a week for 3 weeks. This just means that they will give him some contrast and then do an x-ray to make sure that the remaining bowel is still okay with no strictures. This also means that it is in their mind that they are going to do the reversal!

Day 53

Gestational Age: 31 weeks 6 days
Weight: 1400 grams
3 lbs 1 oz
Length: 16 inches

Josh is doing okay. He was having a bad evening while we were there.... respiratory rate was high, he looked like he was working really hard, his heart rate was up there... he was too warm which was part of it, so we took off his clothes. When we left he was still acting up, so I just called and got an update and he is much better now and sleeping peacefully. They did increase his lipids today for some more calories. The cultures all all negative but he is still on antibiotics.

We did get a weight update this evening and he is now 1460... 3 lbs 3 oz!

Day 52

Gestational Age: 31 weeks 5 days
Weight: 1350 grams
3 lbs

Joshua is now 3 pounds...YAY! He has doubled his birthweight.

They put Joshua back on the CPAP today. He was having lots of apnea/bradycardia episodes and working too hard so they thought it was the best plan of action. They also thought that he was not "looking" like himself and did a septic workup (For infection). The did blood, urine and spinal fluid. There were no results back at the time that we left but they put him on antibiotics anyway. He seemed to be doing fine when we got there. If he doesn't do well on the CPAP they will put him back on the SNIP. As I said before, they are most concerned about getting some weight on him and the rest will follow.

Day 51

Gestational Age: 31 weeks 4 days
Weight: 1330 grams
2 lbs 15 oz

Josh was doing fairly well today. He is still having some issues and they may take him off the nasal cannula and put him back on the CPAP if he seems to be working too hard. The goal right now is to get some weight on him and if he works too hard at breathing he is burning calories that he needs for his growth.

We did get some new pictures today... he is just so darned cute if I do say so myself!

Day 50

Gestational Age: 31 weeks 3 days
Weight: 1310 grams
2 lbs 14 oz

We went in today and to our surprise, Josh wasn't on CPAP anymore but on the nasal cannula. WOW! We didn't think that they were going to make that move this soon, but there it was. We forgot the camera today so no pictures, but we will get some tomorrow so that you can see. That was the big change today. They will see in the next few days how he tolerates this and could put him back on CPAP if he doesn't do well, but he seems to be handling it fine. Everything else is pretty much the same. I am sure he will be on this for awhile, but that's what we said about the CPAP.

Day 49

Gestational age:31 Weeks 2 days
Weight:1280 Grams
2 pounds 13 ounces

Everything was status quo today.Josh is doiong well.Still a couple of desats but the doctors are happy with his progress.They dropped his feeds back down to 1.5cc's an hour because it seemed he was outputting too much even with the other fluids mixing.He seemed to be absorbing better at the 1.5.Other than that all is the same.All is well.Thanks for all the prayers and support.Its doing its job.
love to all Dave and dianna

Pictures from April 4, 2007

Day 48

Gestational Age: 31 weeks 1 day
Weight: 1260 grams
2 lbs. 12 oz.

Josh had a few changes today. They increased his feeds to 2 cc's an hour, and decreased his lasix to every other day. He was on room air for a bit today (this is 21% oxygen through the CPAP). All in all he was doing really well today. Hopefully his weight will start increasing!

Pictures - March 31

Here are the pictures I promised. This is a cute outfit that he was dressed in:

This one is not the most flattering picture but he didn't have any "gear" on. His nose is all distorted from the nose hose, and he had boogies from his eyes.... but I guess he can't be adorable in every picture (I still think he's adorable even with the eye boogies!!)

47 days

Gestational Age: 31 weeks
Weight: 1260 grams
2 lbs 12 oz

Well Josh was only back on the SNIP for a day... They decided that he was having apnea episodes because his caffeine level was not in therapeutic range. They increased his dosage and as of about 8pm last night, he wasn't having any, so they decided to put him back on CPAP. He seems to be doing really well. no other changes. They are just waiting to see how much weight he gains. That seems to be coming right along!

Love to all.

How we were chosen to be preemie parents

I know you all love reading about Josh. This was found on one of the preemie sites that I visit. There are times I asked... why me? Instead of a negative answer... this is positive. So now when I ask why me?? I can say it's because I deserve him.

Most women become mothers by accident, some by choice, a few by social pressures, and a couple by habit. This year thousands of mothers will give birth to a premature baby. Did you ever wonder how mothers of preemies are chosen? Somehow, I visualize God hovering over Earth selecting His instruments for propagation with great care and deliberation. As He observes, He instructs His angels to make notes in a giant ledger. “Armstrong, Beth, son. Patron saint, Matthew. “Forest, Majorie, daughter. Patron saint, Ceceila. “Rutledge, Carrie, twins. Patron saint... give her Gerard. He’s used to profanity.

Finally, He passes a name to an angel and smiles, “Give her a premature baby.” The angel is curious. “Why this one, God? She’s so happy.” “Exactly, “ smiles God. “Could I give a premature baby a mother who does not know laughter? That would be cruel.”

“But does she have patience?” asks the angel. “I don’t want her to have too much patience, or she will drown in a sea of self-pity and despair. Once the shock and resentment wear off, she’ll handle it. “I watched her today. She has that sense of self and independence that are so rare and so necessary in a mother.

You see, the child I’m going to give her has his own world. She has to make it live in her world and that’s not going to be easy.”

“But, Lord, I don’t think she even believes in you.” God smiles, “No matter, I can fix that. This one is perfect. She has just enough selfishness.” The angel gasps, “Selfishness? Is that a virtue?” God nods. “If she can’t separate herself from the child occasionally, she’ll never survive.

Yes, here is a woman whom I will bless with a child who comes in a less than perfect way. She doesn’t realize it yet, but she is to be envied. “She will never take for granted a spoken word. She will never consider a step ordinary. When her child says ‘Mommy’ for the first time, she will be witness to a miracle and know it. When she describes a tree or a sunset to her blind child, she will see it as few people ever see my creations.

“I will permit her to see clearly the things I see - ignorance, cruelty, prejudice - and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life because she is doing my work as surely as she is here by my side.”

“And what about her patron saint?” asks the angel, the pen poised in mid-air.

God smiles. “A mirror will suffice.

-Author unknown.

46 days

Gestational Age: 30 weeks 6 days
Weight: 1200 grams
2 lbs 11 oz

They put Josh back on the SNIP for awhile. He was having apnea/brady episodes, and needed to be back on something that was better for him. They will try again in about a week or so. They increased his caffeine and hopefully that will help him out too. They also increased his lipids (fats) and sugar to get some more weight on him. The more he grows the more likely he will be able to tolerate the CPAP and breathe more on his own. We still have lots of time and he is little yet.

The fellows (pediatricians who are training for neonatology) have all set Josh up with a little preemie in the next room... it's very funny. She is 29 weeks but weighs less and they say she is a cutie from a good family.... No cobedding until 34 weeks we were told... LOL.

Love to all. I promise to put some new pictures up soon!

45 days

Gestational Age: 30 weeks 5 days
Weight: 1170 grams
2 lbs 10 oz

Josh is doing relatively well today. He is having more apnea/bradycardia episodes (this is where he stops breathing for a bit, and then his heart rate drops) now that he is on the CPAP. They may have to put him back on the SNIP but haven't as of yet. Now that he is on the CPAP, it is no longer giving him breaths and he is more on his own. I guess without the reminder that he needs to breathe, he forgets. Other than that he is doing well. They gave him another blood transfusion today which I predicted yesterday (his color was a bit off to me).

I actually got his scrapbook up to date (with the pictures that I currently have printed). Now I just have to keep on top of it!

Love to all.