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.