November 29

It's amazing how nice it feels when you can finally see the end of Maddie's NICU time coming up. After speaking with the Dr. this morning, Maddie is holding at 4 lbs. 13 oz. She took ALL of her bottles yesterday (another benchmark down). She also pulled out her NG tube for the last time because they will not be putting in another one. We are waiting for a bloodtest on Monday and the results of a 12-lead EKG. She'll need to do a carseat test to make sure she doesn't desat while sitting in the carseat but I don't think that'll be an issue seeing as she was in a swing for a while and never desatted. Thank you all for all the well wishes and prayers. We are so grateful for all the support you have shown us. Hopefully we will have a full family photo to put up on Tuesday.

November 27

Ok. . .so where to begin? Well we have had some major positive breaks. Maddie is up to 4 lbs. 12 oz. and 19 inches. She had a follow-up brain ultrasound which had no abnormalities. She had a 12-lead ekg for momentary abnormally high heart rates but we won't find out anything on that until Monday. Maddie is now taking all of her feedings by bottle. She is also in an open crib. The Dr. seems to think that she should be able to come home by early to middle of this coming week. Needless to say, we're extremely excited but Mommy and Jax have been under the weather so once everyone is healthy we'll be even more excited. Thanks again for all the prayers!

Thanksgiving Day!

Sorry, we have been slacking lately with updating this. Maddie is doing well. They have decided to attempt to take her off the caffeine again and see how she does. She is now 4 lbs 10 oz (hope she still fits in the premie clothes when she finally comes home) and 19 inches long! Definitely going to be bigger then our brother. She is up to taking every other feeding and really starting to get the hang of it so hopefully things will move a little faster now. The pediatrician has taken over care now. Mommy and brother are sick so daddy has been going to see Maddie a lot.

November 20th

Sorry this didn't get updated yesterday. We are currently at 4 lbs 2 oz (getting chubby :), we are taking 2 bottles a day, one on day shift, one on nights and doing okay, still trying to get the hang of it. We really like to pull out our NG tube (nasogastric tube- how she gets her feeds if not by mouth) so right now we have an OG (oralgastric tube). Every day we start to look more like our brother. The caffeine was restarted because of our "episodes" and we did have 2 on night shift and 1 so far on days but resolved them ourselves. Things will hopefully keep moving in the right direction.

November 18

Well, progress is happening which is a major positive. The somewhat negative is that it is SSSLLLLOOOOOWWWW. Maddie is now up to 3 lbs. 15 oz. !!! That was a huge gain from yesterday. Maddie also got the opportunity for the first time today to have a bottle instead of using her feeding tube. Mommy got to feed her and she took almost all of the 38mL. She had about 5 left that got pushed through the tube. We still consider that a big accomplishment. Here's to quick progress from here. . .let's hope!!!

November 17

Maddie is doing well. She lost about 10 grams last night. On the brighter side of life, the only wires left on are her monitor and feeding tube. They disconnected her caffeine (which was used to stimulate breathing). She's had a couple spells but last night's spells were not major. They said as long as she doesn't have anything major tonight, we will get to attempt a bottle feeding tomorrow. Here's to hoping for a great night!

November 16

After a bad night of two major apnic/desat spells we've had a bit of progress again. They are trying out Maddie with no oxygen tubing!!! She's now weighing 3 lbs. 13 oz. and seems to be handling things pretty well. They don't have any real reasoning for the breathing issues other than "well, she is a preemie". They may attempt her first bottle feeding tomorrow so we'll see how that goes. She is really starting to fill out a little and looks a little more like her big brother.

November 15

Well the frustration point has arrived. Maddie didn't gain any weight at all over the day but on the positive side she didn't lose any weight either. At this point Danae and I feel like everything's starting to move in slow motion. The doctor's seem somewhat hesitant to start Maddie on bottle feeding but they've said they will like try one feeding per day sometime within the next couple of days. The oxygen tube is still in. There's just not much happening right now. Our hopes that Maddie would be home by Thanksgiving are looking slim at best but doubtful. And yet, in all of this, we dread the sleepless nights that we know await us once she is home. We are definitely grateful that she is doing well and we continue to pray for her continued progress but we both look forward to those quiet moments at home with our new blessing. Here's to continued prayer.

November 14

Maddie's doing well. She made it past her birthweight today. She made 3 lbs. 11 oz. and is showing progress. She has still not been fed by bottle yet but hopefully that will start in the upcoming week. She only had one desat last night and that was about it. The nurse's comment of the day: "She's a great little patient today". Last night there was a "Here's your sign moment". As Brian got off the elevator, the woman at the lactation services asked him if he was here to rent a pump. The here's your sign response...Doubt I'll get anything out this time but it could be fun.

Update 11/13

So we're now at 3 lbs. 9 oz. and then's there is the bigger news of the day. The picc line has been removed and there is no more IV! One less piece of tubing connected is a wonderful thing. She's still having apnea moments and she spit up quite a bit today but all is still looking good. Progress is slow but it's still progress. We have been blessed with a fiesty daughter. I'm sure that will be something we won't like later in life but for now we'll take it.

Update 11/12

Maddie's still at 3 lbs. 8 oz. but did gain 10 grams. The IV that she had has been changed to a general IV solution just to keep it running. (just in case) Her feeding was raised to 28 mL. She's doing well. The steps have been small the past couple days but there is still progress.

Update- November 11th

Another big day. We only gained 10 grams and are still at 3 lbs 8 oz but we didn't loose. We are up to 25ml of formula and our IV fluids will probably be turned off tomorrow. We did not have any apnea episodes today. The next things we'll start working on is keeping our body temp up and getting rid of the oxygen pressure. Oxygen pressure is still at 0.5 liter but we're still on room air.

Update 11/10

Maddie had a very big day. She is now up to 3 lbs. 8 oz. They have been raising her formula amounts by 2ml per feeding. As of her 6:30pm feeding, she was at 20mL. They've changed her formula to a higher calorie formula as well. Her oxygen pressure has been lowered as well. She has been taken off of lipids and lowered her IV. Just 2 oz. away from her original birth weight!!! We are so grateful for all the people who have offered their thoughts and prayers. We appreciate all the help!

Update- November 9th

Maddie is up to 3 lbs 6oz. They decided to keep her oxygen pressure on for today because she had more apnea episodes. They might try again tomorrow depending on how she does through the night. She is now up to a full ounce of formula and should be up to full feedings (2 ounces) in the next few days.

Update 11/8

Well there is some positive news on the day. Maddie is up to 3 lbs. 5 oz. and has been slowly gaining weight. They have also been slowly increasing her amount of formula and decreasing her IV amounts. She has been getting positive comments from all the staff. Tomorrow they are going to start taking her slowly off of her oxygen assistance. She's only been on room air but they've kept pressure through nasal tubing but thankfully they are going to start taking her off that pressure. It's always nice when more wires or tubing start getting removed. All in all, a positive day.

Update- November 8th

Not much has changed. Her weight is back down to 3 lbs 2 oz. Not sure why she isn't gaining weight because they keep increasing her feeds because she continues to not have any residual. She had more apnea episodes and one she has to be stimulated out of. The next few weeks are definately going to be long. Continue the prayers please.

Update-November 7th

Madeleine is back to 3 lbs 3 oz. She is now getting 8 cc of formula! They are still watching her belly closely, if she would poop everyone wold be happier! She has had a couple of apnea spells when she quits breathing but her oxygen saturation remains normal. We're are just trying to take things one day at a time.

Update-November 6th

Madeleine had her head ultrasound this morning and everything looked good. She behaved herself and was wide awake and held the nurses' finger during it. She is down to 3 lbs 2 oz and they had to bump up her IV fluids a bit but she has continued to not have any residual and will get a whopping 6 cc for her next feeding. She just needs to start absorbing it. They are still keeping a close eye on her but she is doing well.

Update 11/5

Maddie's weight has stayed at 3 lbs. 3 oz. so far. There has been some positive news though. She is completely off of the bili lights for the time being. Her feedings have been raised to 4 cc's of formula from 2 and there has been minimal or no residual formula left in her stomach. Tomorrow they will be doing a head ultrasound to check for proper brain function, bleeding, etc. The neonatologist seems to think we shouldn't be looking at any problems but only the results will tell.

Benchmarks

In order for Maddie to come home she will have to meet the following benchmarks:

1) All feeding by mouth
2) Consistently be gaining weight
3) Able to self-regulate her temperature
4) No IV's, oxygen, etc.
5) Pass car-seat test (breathing)
6) No breathing or heartrate episodes

Just a little FYI

Update

Her weight stayed the same. Maddie had been on bili lights but is now down to only one light. She's down to room air but still has the oxygen tubing to give some pressure to remind her to breathe. She's showing positive signs but...(I hate that part) she still has a long road ahead. If you're wondering what has to happen for her to come home read the "benchmark" blog. They are keeping a VERY close eye on her to make sure we don't have any down turns. There's some concern about her heart and digestive tract. This is just being cautious though. There's nothing that shows cause for immediate attention. Keep those prayers coming.

Madeleine Update

Madeleine is doing well. She is down in weight (expected) to 3 lbs. 3 oz. but she is doing pretty well with formula. It's nice that she has been complimented as being "fiesty" by most of her nurses. I will do my best to keep this updated as much as possible but NICU tends to take most of our time. So far things are on track. She still has an oxygen tube pushing air into her nose but it is just basic room air with no additional oxygen so that is definitely a bonus. She's on bili lights. At this point, we're just waiting on her to start growing. Pictures to come......