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!