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!