So far the plan is to put Jay on the broviac line tomorrow. I'm feeling better about it because they feel that he will not be intubated long. It should take no longer than 12-15 minutes and is a common procedure with preemies.

This afternoon Sharon came to visit Jay and sat with us while I held him. It was a nice visit and I enjoyed catching up with her.

Tonight I helped give him a bath and then held him for about one and a half hours. He weighs 1320 grams tonight or about 2 pounds 14 oz. Just 2 oz away from 3 pounds! He's come a long way from the 650 grams he weighed when he was born.

I just called to check on Jay but they haven't done rounds yet. So I'll call a little later. The nurse said he's doing fine. A little bloated again despite a spot treatment of lasix. I wish they knew what was causing this. She said this excess fluid could be making it harder for him to breathe too.

We'll see what the docs say when they round. I expressed my dislike about the broviac but also told them I want what's best for Jay.

My Dad sent this to me today and it really hit home:

ONE PARAGRAPH THAT EXPLAINS LIFE!

Arthur Ashe, the legendary Wimbledon player was dying of AIDS which he got due to infected blood he received during a heart surgery in 1983. From world over, he received letters from his fans, one of which conveyed: "Why does GOD have to select you for such a bad disease"?

To this Arthur Ashe replied: "The world over -- 50 million children start playing tennis, 5 million learn to play tennis, 500,000 learn professional tennis, 50,000 come to the circuit, 5000 reach the grand slam, 50 reach Wimbledon, 4 to semi final, 2 to the finals, when I was holding a cup I never asked GOD 'Why me?'. And today in pain I should not be asking GOD 'Why me?' "

"Happiness keeps you Sweet, Trials keep you Strong, Sorrow keeps you Human, Failure keeps you humble and Success keeps you glowing, but only Faith & Attitude Keeps you going..."

Tonight Joe and I took his Dad (Grandpa Louis) to see Jayan. I'm glad he got to see the baby.

They tried again to get a picc line in Jay (since they slowed his feeds down he needs an IV back in). The poor guy is just out of spots so they may have to put in a Broviac Line. This is a central line that will be a lot easier and they won't have to poke him as much. There's one upsetting part of this and that is he will have to go back on the ventilator to have this put in. This is because he will be sedated as it's considered a surgical procedure. This isn't for sure yet but they are talking about it.

If he ends up going back on the ventilator it should only be for a short time as he's doing ok on the nasal cannula and should wean back to that fast.

Another day in the NICU another day on the rollercoaster but we're getting there.

The ultrasound on Jay's kidneys came back showing no abnormalities. We're super happy about that. He's still a little bloated but they are just going keep an eye on him. Other than that he seems to be doing fine.

His weight is up to 1220 grams (2.6 pounds) I think some of this is fluid he's retaining so he might go down some.

I finally got a picture of Jayan and his new clothes. This is one of my favorite tops because it's bright and colorful. He's doing well. A few desats on the nasal cannula and a brady here and there but for the most part doing well.

So this is what the nasal cannula looks like. It must feel so much better than the ventilator and the CPAP.

He also had an ultrasound done on his kidneys today to make sure they look good. The results haven't come back yet but we should know tomorrow for sure how things look. I held him again for about an hour and a half.

For those of you that have seen Zoolander this picture had "bluesteel" written all over it. :)

When we got to the hospital this afternoon we had a wonderful surprise waiting for us. Our little man is on the nasal cannula. They skipped sprinting him on it from the CPAP because he did so well the few hours he had it on so they just kept it on him. He seems to be doing wonderful so far.

When I went back tonight I didn't kanagaroo with him. I actually held him in my arms so I could look at his sweet face the whole time. I hope he'll get through the night ok on the nasal cannula. This is a huge step in his lung development. We are so proud of him. We love you so much Jay.

Last night I held Jay for about 2 hours and this afternoon for about an hour and a half. It's truly the best part of my day. He's doing so well on the CPAP that they might start "sprinting" him on the Nasal Cannula. This is a device the next step up from the CPAP that will deliver extra oxygen to the baby as he needs it.

He's still on 21% most of the time on the CPAP with a rate of 5. He's doing really well.

His normal feeds will resume this week. The tests they've done for medical NEC are all coming back negative and I'm so grateful for that.

Here are a few pictures from last night of the baby without the CPAP on (he was breathing on his own)

7 weeks old!

Tonight I put on one of Jayan's new little shirts. He looked so sweet and like such a big boy. I held him for about an hour and a half and he slept peacefuly through it. His hair is getting longer and I can see more and more features as the days go by. His cheeks were red and full of color.

He's still doing well on his breathing. Not one desat the whole time I was there. They are still watching his feeds very closely. Tomorrow he's got another xray of his tummy. Once NEC (necrotizing enterocolitis) is ruled out completely they can resume his normal feed schedule.

The humidity in his isolet has been turned off because he's now at 32 weeks gestation and he doesn't need it anymore.

There's a small tiny baby in the room we're in now. He looks like he's about the size Jay was when he was born. I know we still have a long road ahead of us but I realize how for we have come in almost 7 weeks.

Well the little guy ended up having to get IV's back in because he needed some blood. I had expected this would happen so I wasn't too upset. He needs what he needs.

They are also watching his tummy via xray because of some digestion issues he's been having. So far the doctors have told me it's just precautionary.

His breathing has been really good. I hope he keeps this up. He's consistently in the low 20's on his CPAP which is fantastic for him.

Right now my main focus is that he gets his nutrition and starts to gain more weight.

I forgot to mention that on Sunday night he got his first "bath". It was more of a sponge bath but he got all cleaned up from head to toe :) He's also big enough now to start wearing some clothes. I ordered a few NICU friendly items from a website I found. I just need to wash them and take them in tomorrow. Jay's also lucky enough to be receiving some hand me downs from another little boy who was in the NICU named Connor. His mom is friends with a friend of mine and she was nice enough to offer to send them to me. He's gotten some wonderful gifts and one of these days I need to take pictures and post them on here.

Last night I got to hold Jay for about two hours. He slept the whole time and sat at 21% (room air) for pretty much most of it. He has no IV's right now!!! Hopefully he can stay that way for a while. I know he might need something along the way but for now I'm just enjoying him being free from needles and being poked.

The fact that he's doing so well on the CPAP means that his lungs are truly improving. He's getting stronger everyday. There are moments when he gets lazy still but the nurse last night told me that he's still young and that is common.

They've been adding EnfaCare to his milk and he is now tolerating it. So I hope he will start to gain some weight now. He working harder on the CPAP so he's burning more calories and he's not getting the TPN through IV so he dependent on this milk and EnfaCare to gain.

Jayan is continuing to amaze me. When I got to the hospital this afternoon his oxygen rate was turned up a little so I asked if he'd been having some spells. They told me that they have discontinued his back up rate so they'd turned him up just to be on the safe side. While I was there he bounced around between 25% and 21%. I'm so proud of him.

There was a class tonight for NICU parents so I attended it. It was pretty informitive but mostly it was just nice being able to sit and talk to other parents who are going through what I am.

Our Family :)

So far so good on the CPAP. He does have some desats but he's maintaining great rates and his blood gasses have been coming out good. He's at 13.4 cc's now and they are trying a different fortifier to add to the milk to give him extra calories.

Jay's doing well so far on the CPAP. They say the EKG looks good but his heart rate was all over the place. Yet he was at 21% which is room air and his stats were perfect for the CPAP. Go figure. They are doing a blood panel at 3am this morning to see if maybe he just needs more calcium or potassium. I hope it's something simple like that.

Jay got moved into bigger diapers today too. He had a lot done for his big 6 week b'day! His gestational age is 31 weeks.

Since he was so used to having the tube he got into the habit of sucking on it. So he got a little pacifier today and he used it like a pro. I took a video of that. You can see the CPAP in the video. It covers his nose and head and looks pretty constrictive but it's truly got to feel better than having that tube down his throat. They were suctioning his nose and I got a picture of his whole face. This is the first time I've gotten to see him without all of the gadgets. I also heard him cry tonight. Jay has the sweetest little cry. It's the first time I heard him since the day he was born when I heard a little something when they took him away to the NICU. All this time we couldn't hear him because of the tube. Now he can make all the noise he wants to.

Video of Pacifier

Video of CPAP


BIG YAWN!!!

JAY IF OFF THE VENTILATOR!!! He's now on the CPAP and his little mouth is free of anything and there is no tube down his throat! Hopefully he will do ok for the next 48 hours and be able to stay on this and not switch back. Grandma Judy and I saw him this afternoon he seemed to be doing just fine on it. She spoiled Jay with lots of goodies including a beautiful crocheted blanket that's about the size of a crib.

SUPER AWESOME DAY FOR US!!!

When I got to the hospital in the afternoon yesterday the nurse told me that they had tried to add fortifier to my milk to boost up Jay's calories a little. Well his tummy did not like it and the poor baby brought it all back out. So they took that away and went back to just plain milk and he seems to be tolerating it fine.

His eye appt was neither good nor bad. The doctor just said that he had premature eyes and will check again in two weeks.

Last night when I went back to the hospital he was having an irregular heartbeat on the monitor. The doctor told me not to be too concerned that this does happen sometimes with preemies. They did an EKG on his heart this morning when I get to the hospital this afternoon they should have the results. They also did another head ultrasound and the preliminary observations look good. He did seem to have more desats yesterday I hope he's not getting sick again today is the last day of his antibiotics and all blood work is still coming back good.

I got to hold Jayan again for about an hour and a half tonight which was a huge treat for me. He's been weaned down again on his rates and as soon as he can maintain them and reduce his spells he will be extubated. Tomorrow morning he'll be at 9 cc's on his feeding. And his weight tonight was 1050 grams. He's gained exactly 400 grams since he's been born.

All of the tests they did on the spinal fluid have all come back negative!! We are so happy about that.
Jay is now at 1000 grams or 1 kilo or 2.2 pounds. :) He's up to 6 cc's every three hours on his feedings and he is still tolerating the milk.

Last night Joe and I went to visit him and I got to hold him. I hadn't held him since he got that infection so I was truly at peace last night. Joe is still a tiny bit under the weather and even though he's feeling better we don't want to take any chances so he can only look not touch.

His ROP eye check is on Thursday providing he's having a good day.

Well in the end they did do a spinal tap today to be on the safe side. But everything is looking negative so far. He's up to 4.9 cc's of milk every three hours. Even though I see him every day I can tell that he's filling out a little. They say the milk will really help him to grow now.

The nurse asked me to bring in a black and white picture of Joe and I so that the baby can look at it while he's awake and see our faces. He's going to slowly recognize things though right now it's just a blur to him. In the next few weeks he'll be tested for ROP (retinopathy of prematurity). This is an eye issue with preemies, we hope that he'll be ok.

Baby Feet Y

Peaceful little baby

Jay's blood work has come back negative two days in a row, this means that they will not have to do a spinal tap on him!!! He's also being weaned on his rates in order to prepare him for extubation and the move from the ventilator to the CPAP (Continuous Positive Airway Pressure) He's had a very peaceful weekend.

He's also up to 2.4 cc's every three hours on milk and he weighs 980 grams (2.16 pounds) His feedings are going very well and the baby's digesting my milk with no problems right now.

They pulled the picc line out of Jay's foot. This means another one will have to be put in but they are going to wait until he's recovered from this infection to put it back in. They also tried to do a spinal tap on him to check his spinal fluid but it wasn't successful so that will have to be redone perhaps tomorrow. Jay was numbed in that area so he did really well through it and is resting peacefully for the night.

Jay got a special visit from his Aunty Tasha tonight. She hadn't seen him in a while and noticed a lot of growth. That's always nice to hear because I see him everyday so I don't always see all the changes. She said the little man is looking like his mom these days :)

5 Weeks!

Jay's five weeks old. Not only that he now weighs 920 grams which means we are over the two pound mark!

He's having a good night. They are checking again to see how the infection is and those results should be back tomorrow.

Whoever told me the NICU was one step forward 3 steps back wasn't kidding. It can be so frustrating. But the hope we have is that our son will someday be home with us happy and healthy. Until then we have faith that these doctors and nurses will do the right thing for our son. Thank you for keeping him in your prayers.

This morning Jay's lungs are looking much better. I'm hoping the lasix is working and they just keep him on it instead of switching him around. When I went in last night I found out he has an infection where his picc line is. So they are starting antibiotics for that. I'm just happy they finally figured out what was going on. They might have to put in a new picc line we'll have to wait and see.

This morning's xray of Jay's lungs still look pretty "whited out" which means there is a lot of fluid. They are keeping him at his rates and continuing with the lasix medication. I truly hope this clears up soon. I keep being told it's because he was born so young so his lungs are just immature and need to grow.

Yesterday when I got to the hospital in the afternoon the doctor was by Jay's bedside along with the respiratory therapist and the nurse. This is never a good sign. It seems that when he drops down on his oxygen he's having a hard time coming back up. Yesterday they actually had to bag him which means that he gets breaths from a manual pump. It's a scary thing to see but something that happens often in the NICU.

His lungs are still very wet. I was hoping this would clear after the PDA ligation but they are just too underdeveloped. So they are continuing with the lasix (a drug to treat excessive fluid) Hopefully today's xray will show some improvement.

Last night when I went back to the hospital they had raised his rates on the ventilator. According to the doctor they feel that they may have weaned too fast for his small lungs which is something they do as long as the blood gasses come back fine. Last night they chose to hold him at his rates. He seemed so much more peaceful last night.

In good news it looks like his heart is doing fine after the surgery. And his blood pressure numbers are consistently normal. He's also accepting the milk and digesting it. So we're happy about that.

All in all Jay's having a good day today. He's very active and squirmy but both the day and the night nurses seem very impressed with his strength. His rates are very good but he's still up and down on his oxygen and once he can get back down and maintain it I think he will be extubated. (removal of the ventilator tube)

They have also resumed his feedings today. 1.2 cc's every 3 hours. Hopefully his little tummy will accept and digest it with no problems.

My friend Dianna who also had a preemie baby at 25 weeks (Joshua who is now a healthy happy almost 11 month old baby) sent me the best gift in the world. A book on Preemies and the experience that parents go through having a preemie baby in the NICU. And also a Preemie Book of Memories where I can log all of Jayan's milestones and achievements. It is the perfect gift. I am looking forward to filling everything out. I've already read about 40 pages of the book.
So far this is my favorite quote in the book so far:

"Our time in the hospital was the most emotionally grueling experience of my life. Forget the Hallmark moments of bringing your newborn baby to your breast, posing for pictures in the recovery room.....Welcome instead to the world of intimate bonding sessions with your breast pump at 2am, peeling and chapped hands from the antibacterial soap, total strangers spending more time than you with your baby, and the endless beeping of computers monitoring vital signs. This is the life of a NICU mom."

When I got to the hospital on Saturday night Jay was having a rough night. They needed to give him some blood which required a new IV in his arm. All in all it was just a rough day for him. So we decided to postpone holding him until tonight.

Today was much better mostly because he was left alone. I held him tonight for about an hour and a half. It's the best therapy in the world. I also told them I don't want him being moved back to the old hospital. They told us we had the last say as the parents and if we didn't feel comfortable about it they would never force us.

He hasn't gained much weight but he is 13.5 inches long so he's grown an inch and half longer.

They found a little blood in his tummy so they've stopped the feeding for now. I was told it was old blood and probably an irritation from the tube. But just to be on the safe side they stopped the feeding. Other than being a little cranky during his cares (diaper change etc.) he was pretty good. We're still trying to get back down to 21% on the vent which is room air but he hasn't been down that far since he had the surgery. I hope he'll get back there soon.

Today Angie and Yvette came to vist and I had a nice afternoon with them. Much needed!!

Tonight I'm going back for kangaroo care!! Nothing makes me happier than holding my son.

One hard thing about him being in the isolet is seeing him cry and not being able to pick him up and comfort him. All I can do is just hold his tiny head and try to soothe him. It's frustrating. But when he seems to calm down with me there or by my voice it makes me really happy.

They've also started giving him caffine which is supposed to help him with his breathing. Apparently most preemies are on this. I find it funny he gets caffine and mom can't have any. :)

Jayan's getting 1cc of my milk every 3 hours. That is a very tiny amount but that's how they start out. So far it looks like he is tolerating it. That can change but for now I'm really happy about it.

In other news the doctors think they want to move him back to CHOC Mission. Which is where he was born. I loved that hospital and did feel more comfortable there. This hospital is closer for us and more convinient, but they want to open up his spot for babies that are sicker and need to be there. I am torn by this, of course no matter where he is I'll be there it doesn't matter if it's a longer drive. But the hospital he's at now is truly easier to access and it's also closer to my work.

As of the 2nd I am back at work. I know it seems crazy but I will be taking all my time off when he comes home. I just looked at the clock. My baby boy is four weeks old and that takes us to 29 weeks.

Jay's having a good day. He's had a few desat spells but his nurse told me that it's perfectly normal after having surgery. For the most part they are pleased with how he's doing. He was sleeping peacefully when I saw him this afternoon and he seemed comfortable. I asked the nurse if he could feel the pain from the surgery. She said at this point not so much but he may be uncomfortable. They are still giving him pain medication but not as much as yesterday.

If all goes well tonight they will start feeding him tomorrow!!

I just got home from the hospital. Jay did very well through the Patent Ductus Arteriosus surgery procedure. (PDA) The doctor was very nice and explained everything to me. Right now he's very sedated and sleeping peacefully. The incision was actually made in his back. So they have him on his tummy now which I know he likes. We are so proud of you son.

Happy New Year!

I just came home from spending New Year's Eve with my son. They knew I was coming in late and had it all set up for me to be holding Jayan at midnight. It was one of the quietest New Years eves for me but also the best ever having him in my arms. Poor Joe has a cold and couldn't be in the NICU with us. I look forward to next year when we can all be together as a family.

Tomorrow Jay is scheduled for his PDA closure surgery. Everyone has told me that it's very routine and should only take 15-20 minutes. But if you could just keep him in your thoughts we would really appreciate it.

Happy New Year Jayan!! We love you so much.