7 weeks and counting 5-30-08

Hi!

Maddie is still doing awesome! She is growing by leaps and bounds, we are now 3lbs 5oz! She hit that 3lb mark running. She is still being weaned of her O2 and is now on a flow of 1.5 liters and doing well. Her feeds have been upped to 9.5ml/hour. Currently her weight is 1.51 kg and when she hits that 1.7 kg mark they will pull her NJ tube to an NG tube (feeding tubes). Also we will be allowed to (cross your fingers) do what they call "non nutritive sucking". That is where I will be allowed breast feed her essentially. I think they'll have me pump prior to doing this with her, but she will still get some milk. When she reaches the 1.8 kg mark she will be moved to a crib and finally get out of the isollete. We are finally able to see the light at the end of the tunnel. Pray that she continues in this upward movement and we are able to bring her home soon.

Doing Great 5-26-08

Hey!

Maddie is doing awesome. They were able to wean her off of the vapotherm to a regular flow nasal cannula. She is at 2 liters and room air. So basically breathing what we breathe, with just a little help keeping her lungs open. They have upped her feedings to 8.5 ml/hour. And she has gained weight, 2lbs 15oz. Almost to the 3lb mark! I can't believe it. It's so funny sit back and think that she is huge. I remember thinking Hunter was tiny at 7lbs 4oz. Never again. It's definitely all relative....

Thank you for all the prayers and support.

Still Going Strong 5-21-08

Ok, so I know it's been a few days. Sorry about that. But things have been good. Very Good!

Maddie is doing really well. She was having some issues keeping her O2 and heart rate where we wanted them. They decided the cause was her reflux (spitting up) and decided to put in an NJ tube (feeding tube that goes into the small intestine). She had an NG tube (orange tubing in the pictures). The new NJ tube goes in the same way just further in. The NG went into her stomach. Anyways, this has tremendously helped. She has had only like 2 episodes since last week, which is HUGE! They are weaning her down still on the vapotherm and hope to get the regular flow nasal cannula hooked up tomorrow. Keep your fingers crossed that she can do it.

She has been steadily increasing on her weight and feeds. She is up to 2lbs 13 and 1/2 oz! And 8ml/hr on her feedings. She also passed her eye exam today. No ROP (retinopathy of prematurity). Which is an eye problem common in preemies and can lead to blindness. That is a really good thing that she passed.

She's really starting to fill out, and can even fit into some "normal" preemie clothes. Well when I say "fit" take it with a grain of salt. She is big enough that they stay on and she can't just slip through one of the arm or leg holes anymore. LOL!

Comparision 5-16-08

Here is a update on size photo. Compare her size relative to the Minnie Mouse next to the older picture with Minnie. Also she is wearing her 1st onsie and socks. Finally "big girl clothes" are starting to fit, LOL.

Another Week in the NICU 5-15-08

Hey Everyone,

Thanks for stopping by.

Things have been your typical NICU rollercoaster. Thankfully not with too many steep falls or climbs, however you want to look at it. We've had a week trying to wean her down on her air flow. She's had several really good days and then a rough one here and there. Nothing big, just having a hard time remembering to breathe. No new issues. We've decided to let her hang out where she is on her flow and let her grow and get a little stronger. In a few days we will wean her down a notch and go from there. If she does well on that we might be getting rid of the vapotherm (higher flow) to the regular nasal cannula in the next week or so. But we're not going to push it.

She is on full feeds still, but she's grown so they've increased. Now 7ml/hr. I think that is roughly 5oz/day. She is up and down on her weight this week but has gained overall. Today she weighed in at 2lb 5oz, down from the 2lb 8oz yesterday but it's ok.

We are still getting to hold her, which is always wonderful. Hunter keeps asking when he will get to hold her. Maybe when she is 4lbs....we'll just have to wait and see.

Keep praying!

Just a Picture 5-11-08

Success 5-10-08

Here is the drama pose. This is a favorite with all the staff. It speaks for itself.

Oh I forgot to mention yesterday that they did another brain ultrasound and it came back normal again. Praise God!

The First Month 5-9-08

What a month! I can't believe it's already been that long. We are 1lb bigger (2lbs 3oz) and still going strong. She is still breathing on her own. We are in the process of weaning down on the flow, down to 3 liters from 4. They removed her PICC line (IV fluid). So now she is getting just her milk via the feeding tube and no clear IV fluids. All her medication is being given via a feeding tube as well. Her albuterol treatments are being weaned as well.

The NICU is truly a rollercoaster. Every day this past month has brought forth it's own story from challenges to reasons to rejoice. She is growing, breathing, and overall doing VERY well. I do think that we are doomed once she comes home. She is so full of spunk, even now, wanting things done her way and thats the end of it. Everyone comments on how dramatic she is. I will try to catch her drama pose in a picture.

Thank you to all who have followed this blog. We love hearing from you all, via blog, email, phone, whatever it may be. Please continue to read and pray. The prayers are working!

2lbs's of Love 5-5-08

Hey Everyone,

The NICU rollercoaster is ever changing. One day has it's own set of challenges different from the next.

All weekend Maddie had trouble breathing. She went way up on her O2 support, and at several times I thought we were looking at the vent. Turns out she had some air in her intestines (which they just have to wait till it comes out on its own) and reflux going on. She was so busy trying to get all that junk out she just couldn't handle breathing well to. But as soon as she got it out she could breathe again and is back on room air. She seems much more comfortable today. Today, however, her O2 was fine but her heart rate was all over the place. It was mostly high. They decided to hold off on an albuterol treatment so hopefully that helped to slow it down.

We have reached the 2lb mark. She was kind of up and down on her weight last week so it took longer than expected to get there. She doesn't quite look like 2lb's yet, but she has definitely grown. Even her hair is getting a little longer and thicker.

Keep praying for us. We need all the strength we can get.

Thank you!

What a Week! 5-2-08

Ok, sorry for the lack of updates.

What a week...it has been crazy, emotionally for me. I think reality is setting in, or at least exhaustion. LOL Imagine that.

Maddie is doing great today. After our rollercoaster week of holes in the heart, reflux, a partially collapsed right lung, and ABD's we are resting peacefully.

I spoke with the cardiologist and he was very reassuring that as long as there are no problems as a result of the holes we do not need to worry. They will be reassessing the situation regularily. As long as she shows no symptoms we will not need to do anything (surgery) for a while.

The albuterol appears to be working to re-inflate that lung. She is sounding clear. She, however, does not appreciate her breathing treatments. She fights them and acts up the whole time. LOL I never thought I'd be so proud when my child acted up. Fighting means she's strong. She has been brought down to 4liters on the vapotherm (higher flow nasal cannula) from 5 and appears to be tolerating that well. If that continues they will continue to wean her down.

Her ABD's episodes are alright. She has not had 6 in a 4 hour period, but rather anywhere from 4-6/day. Which is better. She had several this morning so they decided to do another blood transfusion. When they are so little their bodies just don't produce enough red blood cells to carry the oxygen, so they need a little help. I was concerned that it has been less than a week since her last transfusion, but the NP assured me that it was ok and that it's amazing she hasn't had more.

She is up to full feeds! 5.3ml/hour. She appears to be tolerating that amount and if she continues they will remove her PICC line and that means she will only be receiving milk! Woohoo!

My brother in law is a plumber and he was at a ladies house earlier in the week. They got to talking and come to find out the nurse works at the hospital I delivered at and helped to deliver Maddie. She was telling him that they call her "The Miracle Baby" over there. The doctor that delivered her still comes by to check on her every once in a while and tells us that those nurses are asking about her progress. I cannot thank them all enough. I don't even want to think about where we'd be right now without their quick thinking and actions.

Thank you all for your prayers and support.