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.