And Then There Were Two 8-20-08

I would like to introduce to you, The WallitschFour blog at wallitschfour.blogspot.com. It is a new blog I've created to keep everyone up to date on everything going on in our household and then some. I will continue to post occasionally on here updates pertaining to Miss Maddie, but will probably be posting more often on the new blog.

So speaking of updates, Maddie is doing awesome as usual. I'm guessing she's about 7 1/2 pounds. She eats like nobodies business every 1-2 hours sometimes! Thankfully not at night. She has slept through the night a few times which has been great. We are weaning our selves off of the monitor. We now have her on it only in the car and at night while we are all sleeping. During the day she is monitor free and we just check her frequently. We've been working on getting ourselves to this level of independance from the monitor, so don't think we just decided to unplug one day and that was that. It's taken some time, but things are definitely feeling more like normal.

Maddie has started being awake more and more. She has the biggest smile (hard to catch by camera, but I'll continue to try). She smiles biggest for her brother though, even letting out the occasional giggle. It's the cutest thing.

That's about it, no new health issues or changes. Just getting bigger and developing wonderfully.

Thank you as always for the prayers and support. We never could have made it through these past several months without all of you!

All Clear 8-7-08

Hey Everyone,

I hope that you are all doing well!

We are doing great. Hunter is visiting with his grandparents in South Carolina. They are spending the week riding around the lake in the boat and jet skis and around Columbia in the convertible. I'm so jealous! :-) I know he is having a great time. Maddie, Mom and Dad had to stay home to hold down the fort. When he returns it is countdown to school. He is excited.

Maddie is doing great. We had a checkup today with her cardiologist. The 2 holes in her heart are still there, but are almost completely closed. They had a really hard time even finding them. We do not have to go back for a year and they don't think she will ever need any kind of treatment for them. PTL!

She saw her eye doctor last week and the ROP is gone. We will not have to see them until next May.

She had an ear infection about a week or so ago and I think she's finally getting over that. I hope we are not headed for years of ear infections like with Hunter.

She has definitely gained some weight. The last post had her at 5lbs 3oz and 17.5 in long I believe. We are now 6lbs 12oz and 19.25in long!!!!!! She'll be 4 months old this Saturday. Whew!

Doing great! 7-21-08

Hey All!

Maddie is doing awesome. She's so good.

We did however forget how much work a newborn is...but we quickly remembered. Thank God we have the opportunity to remember this time.

Here are some new pictures. I'll try to do better about at least posting pictures.

Update 7-10-08

Yeah! Due date has arrived!

Maddie is doing great! We went to the doctor Tuesday. Her eyes are greatly improved, almost completely healed up. Her neonatologist sees no signs of developmental delay and is very pleased. She is up to 5lbs 3oz 17.5in long! She eats like you wouldn't believe so it's no wonder she is growing so fast. We could not be happier with how things are going. She is an amazing little person.

I've attached some recent pictures.

Home Again 7-2-08

Hi Everyone,

I wanted to let you all know that we are now home again. We actually came home on the 27th, but seeing as the stay was short lived last time I did not update right away. JIC.

Well, so far so good. Maddie is doing awesome. She has gained weight and is now 4lbs 14oz 16.5 in long! She has had no episodes and her monitor has not been alarming. We visited her pediatrician the other day and everything checks out. We also went to the eye doctor and her eyes are improving. Yeah!

Thank you for all your prayers and support, please keep praying that things continue to go well. She is so susceptible to infection and will be for the next year or so. Even a common cold could send us back to Kosair.

Thank you and have a happy 4th of July!

Update 6-24-08

Hi All,
Things are going well in the NICU. It's as if we never left. Actually I'm not sure everyone knows we went home and are back, but whatever.
Maddie is doing just fine. She is growing, up to 4lbs 8oz and 16.5in long! She gets chubbier every day, I can't even count all the rolls on her thighs. LOL!
They did a test yesterday called a swallow study. This is to help us understand what is going on with her reflux. Well she passed it with flying colors (which is a good thing, it just doesn't give us any answers). We are now playing the waiting game again. Once she is so many days free and clear of episodes and continues to gain weight we can come home.
Last time I was a nervous wreck to bring her home, hence the post. This time we both feel ready. Mothers intuition or something must have been kicking in last time.
Keep praying. I'll do my best to keep you updated.
Thankyou!

Back in the NICU 6-20-08

Hi everyone,
What a crazy week this has been. We are actually back in the NICU.
Monday night after a bottle Maddie began breathing really shallow, she took a big gasping breath and we looked at her. She had begun to turn blue. Patting her on the back and other stimulation would not bring her back and I ended up having to do CPR. It only took about 1-2 minutes but she began to pink up and breathe well on her own. We were staff-flighted to Kosair and after 2 minutes in the ER she was off of all O2 and looking like her old self again. They admitted us to the NICU (only the 2nd baby in 7 years to return, rather than go to the PICU) for observation and we are still there. She will probably be there for another few days. We've been working with speech therapy and a lactation consultant to see if we can remedy this problem and hopefully have no more repeat episodes.
She has done well all week and we are beginning to calm down and feel a little better about the whole situation.
Please keep us in your prayers that she will grow stronger and bigger and when she does come home again will be able to stay there.
Thank you!

Online web nursery pictures

http://www.our365.com/NewbornPortraits/BabyDetail.aspx?birthid=e493276b-5748-4f7b-82da-4d7faf22757c
Just follow the link.

Home At Last 6-15-08

Well, our NICU journey has come to an end. We are at home. I cannot believe that this day has already arrived. Time has flown by.

Maddie is doing very well. She is home on a monitor and we will have home nursing care twice a week for the next two weeks. I know that I should sound more excited, and don't get me wrong. We are so happy she is here. But also terrified! We have left the security of the NICU. The security of having doctors and nurses right there in case anything went wrong. Of having all the tools necessary for anything that might come up. Now we must face these challenges on our own. They say that these feelings are normal and that within a few weeks will subside. I hope they are right.

Keep praying for us. Pray for peace for Jeff and I, pray for Maddie's health, that she continues to do well.

Thank you.

Self Care Room 6-13-08

Hi Everyone,
I am typing this with just one hand, because my other is occupied holding our beautiful girl. Maddie has been having a hard time with her bottles at night and has been choking on them thus delaying our trip home. So, I elected to stay with her 24/7 and basically strictly breastfeed which she does amazingly well with. If all goes well we will be headed home Sunday.
Keep praying and thank you all for keeping us in your thoughts and prayers.

Not Wednesday 6-10-08

So we've been pushed back till Friday at the earliest to come home. But we're ready. She's passed her car seat test (see picture) and hearing screen. We've been trained in the giving of the medication, monitor managment, and CPR. All that is left is the eye exam tomorrow, take pictures and to go home! Keep praying, we need 3 episode free days to get home.

Many Changes 6-9-08

Well, I can't believe this day has come. They are talking about sending her home sometime this week! She now weighs 4lbs 1oz and is taking all her bottles at night and breastfeeding during the day. She has continuously gained weight and has been keeping her numbers up. She has also been moved out of her isollette (enclosed bed) into a open crib and has been able to keep her temperature up. If she can continue to gain weight and not drop her heart rate or O2 they will let us finally take her home. Possibly as soon as Wednesday! Aghhhhh!!!! We are so excited. Keep your fingers crossed and pray that these things happen.

Rolling Rolling Rolling 6-5-08

3lbs 13oz, no O2, taking bottles and nursing! Woohooo! What a day, I'm pooped! LOL
Nurses are starting to predict a coming home date. Keep your fingers crossed and keep praying. The light is getting brighter!

Feeding Frenzy 6-4-08

Hi Everyone!

We have some big news. Maddie was able to take her first bottle! She loved it and did very well. She took 11ml yesterday and 15 today. Today they stopped her continuous flow of feeds and started her on an 3 hour schedule. She is allowed 1 bottle a day and tomorrow she is going to get 1 bottle and 1 breastfeeding session! WOOOHOOOO! I can't wait. This feels like the biggest step towards coming home so far. They will work her up to breastfeeding while I'm there and bottle feeding when I'm not over the next week or two depending on how she tolerates this. She heard the nurse and nurse practitioner talking and when they said something about her pulling her own NJ tube (feeding tube in the small intestine) out she gets to start eating and she did it less than 30 minutes later! So smart.... So we got to start this sooner than expected. She's not quite up to the 1.7kg I had mentioned earlier. She has grown a little more, 3lbs 9oz, but I suspect she will be growing even more after we get this feeding thing going good.

She had another eye exam today. She didn't pass this one with flying colors though. She has stage 1 ROP in one eye and stage 2 in the other. Now, the doctor said that this is nothing to worry about yet. There is a 75% chance that it will clear up on its own. If it does not clear up or gets worse she may have to have laser surgery. Please pray this doesn't happen. We would love for it to clear up all by itself. I don't really understand the ROP thing, so I will read up on it and post more later after her next eye exam next week.

3lbs 8oz and counting 6-2-08

A little tuckered out.

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.

Result Day 4-29-08

The results are in.

EEG shows that her PDA has closed. She still has a possible PFO or ASD (not sure which at this point) and that her VSD is still open. Her VSD is moderate in size and could possibly require surgery to repair. This will not happen for quite a while, probably not even this year. She will need to be monitored carefully to make sure there are no complications from these. I'll know more after we actually speak with the cardiologist.

All the tests for infections have again come up negative. She has had fewer desats since yesterday afternoon and when she does desat she comes back on her own.

Her chest x-ray showed a change from last week. She is beginning to develop chronic lung disease or BPD as it is now known. There is some fluid backing up into her lungs. This could be the culprit of all the desats. Her chest still sounds fairly clear when listened to, but x-rays show otherwise. They have started her on albuterol treatments to try to get her lungs to open up and will do more x-rays to see if it was beneficial or not. This is not too serious. We will most likely have to perform breathing treatments once she is home for the first few years and be extra cautious during RSV (cold and flu) season. Or so they say....

She has gone up on her feeds to 4ml/hr. And seems like she is always hungry. Today she was eating everything she could get her hands on including her hands. I was also able to hold her today. The nurses said it would be ok, since she is showing that she likes to be touched and fussed over. We tried it and she tolerated it very well. Her stats stayed very high pretty much the whole time.

Monday, Monday 4-28-08

Well, how to start.... Today was alright. Maddie had a rough morning and her stats were all over the place. She'd be fine one minute and way low the next. This caused the doctors concern. They decided to run more tests today to recheck for infection, do x-rays, stop the increase in her feeds for now and go ahead with all the cardio check up stuff today. When I left this afternoon all the tests were normal that had come in. Also she had had a great afternoon. Her stats stayed right where we would like to see them. If she continues to to have this difficulty keeping her stats up they will likely try the bubble c-pap again. The doctor however is not thinking this will help to much, because she will need to remember to breathe and that is what our problem is right now. She is having these episodes of apnea which cause her stats to go down. So they might decide to put her back on the vent. I pray that doesn't happen. We have been told that this could happen, from the beginning they have warned us. She is so small. It has amazed everyone how long she has been doing so good.

We should know tomorrow the results of all the tests and the heart situation. Please pray that there are no major complications and that the heart is healing on its own.

Oh! She weighs 1lb 15oz! I just can't believe how fast she is growing. She looks so much bigger these days, but she's still a peanut.

Reflux 4-27-08

Hi Again,
The verdict is in. Reflux appears to be the cause of our crazy day yesterday. They started the reglan yesterday and it seems to have kicked in and is working. Also they suctioned her nose and found milk, which points to reflux. She is doing well now. Up to 3.4ml/hr on feeds and back to clear IV. Also she now weighs 1lb 13oz! Growing up so fast (LOL)!
Thanks again! Love you all!

A, B, D's 4-26-08

Hi All,
A, B, D's? What's that? A-Apnea, B-Bradys, D-Desats. That was the story today with Miss Madison. I told you how they were going to count her B's and D's to determine whether or not to put her back on the vapotherm. Well she reached the magic number and went back on the vapotherm. She, however, continued to have these "episodes" so now they are looking at reflux as a possible cause. They have elevated her bed and started her on a medicine called reglan to see if that alleviates these symptoms. Another possible cause for the increase in these is infection, but since they did all that work up earlier in the week and the antibiotics they are not thinking that is the case.
By tonight she was doing much better. She had only had 1 episode since the 7 o'clock nurse came on shift.
This is all normal preemie stuff...or so they say...but it's still hard when you see your baby turn blue to not FREAK out. You just tap on them and disturb them and they come right back, then you can breathe again.
Thanks for the prayers!

The Last Couple of Days 4-25-08

Hi Everyone,

Maddie is still doing great. We have tried to keep her stimulation to a minimum all week since she had a rough Monday. Every little thing can affect a preemie in either a positive or negative way and they just can't handle more than one thing at a time. So minimal stim is best.

She is doing great. She is up to 2.2cc/hr on her feeds and will go up to 2.5 at 2am tomorrow morning. She has had an increase in brady's and desats since going back on the regular flow nasal cannula so they are counting them. If she reaches so many in a 24hr period they will return her to the vapotherm (a higher flow). Other than that she has been a great little girl. No other true concerns this week.

Cardiology will be following up with some more x-rays in the next few days and will do an echo. She does have a couple of holes in her heart, some normal some not so normal, but still common in preemies. They are not causing any big problems and the cardiologist is not concerned right now. We will know more about this after the follow up, comparing old x-rays to new to see what the story is.

She has gained weight. She now weighs 1lb 11oz and is 12 3/4in long! "Milk, does a body good!"

And check out the red hair!

Thanks for checking up on us!

Feed Me 4-23-08

Maddie did awesome today. In fact she did so well, they put her back on a regular flow nasal cannula and started her feeds back. She has gained weight and now weighs 1lb 9 1/2oz! She was upset earlier so I offered her pacifier to her just to see what happened. She sucked on that thing for 30 minutes and had quite the grip on 2 of my fingers at the same time. When she fell asleep the paci fell out and she let go. I tried to get her to take it again so I could get a picture of how cute she looked, but she just wouldn't cooperate...there's always tomorrow.

A Better Day 4-22-08

Today was a good day. Maddie had only 2 brady's (where they forget to breathe) since last night and her belly was no longer swollen. Her x-rays today looked good to. Tomorrow they are going to restart her feeds and take her off the antibiotics. They will probably change one or two things back at a time to make sure she is going to be able to handle things again. We have just let her rest the last two days, keeping stimulation to a minimum. We have not held her, or even hardly touched her. Today we only lifted the cover on her bed to peek in maybe 3 or 4 times all day.

This is Hunters favorite picture of his sister. He says she looks happy here.

Thank you again (I know it seems redundant, but we truly mean it) to all of you out there praying and thinking of us.

A Bit of A Rough Day 4-21-08

Hey Everyone,

Maddie has had 12 great days. Today, however was a little rough. When the nurse checked her out this morning her belly was distended (swollen), just a little. But that is a preemie red flag. She listened to her and she sounded fine. They proactively stopped her feeds and are putting her back on TPN (a cocktail of sorts, nutrition in an IV). Her color was a little pale, but that cleared up within an hour or so. They did some tests and things checked out ok, a little suspicious, but still nothing to be alarmed about. As the day went on though, she had a significant increase in "bradys". This is a thing that preemies do, they just forget to breathe and they desat (heart rate and 02 goes down). She had been having only 2 bradys in a 24 hour period, which isn't bad at all. But by this afternoon she had had 6 in only a 4 hour period of time. This alarmed the nurse, who spoke with the NP. They decided to up her from just the standard nasal cannula that she was on to a more "high flow" nasal cannula. They also want to start her on some antibiotics to make sure there is no infection and to get a head start on it, just in case.

This is just a minor bump in the road. We were warned about the "NICU Rollercoaster" and are just now seeing what it's all about.

Please continue to keep us in your prayers. We are very thankful to all of you for your support, prayers and thoughts.

Oh, the picture you are seeing is the result of the nurses falling in love with her. They have dressed her up in a little green dress/shirt and put a pink bow in her hair. It is from yesterday, 4-20-08.

Staying Strong 4-19-08

Maddie is still amazing us day by day. Every nurse that has taken care of her is amazed by how well she is doing. Even the PA, NP and MD's. Thank you for keeping us in your prayers, they are working. Please continue!

Love you all!

Kangaroo Daddy 4-18-08

Hey Everyone,

Today was a good day. Maddie is still doing great.

Daddy got to hold her today. She loves to be held, her stats stay so calm and she just sleeps away. When the nurse took her from Jeff and put her back in her bed, she was not happy. Her stats went down for a few seconds, it was as if she was saying "How dare you take me from Daddy?!"

The nurse practicioner came in to see Maddie today. She said she is doing wonderfully. Soon she should start gaining weight and will be up to full feeds. They need to continue to watch her closely for feeding intolerance and NEC (necrotizing enterocolitis). This is where she doesn't tolerate the milk well and an infection could form. Right now she isn't showing any symptoms, but they have to take it slow. Her digestive system can only handle so much right now.

No News Is Good News 4-17-08

Hey all,

I was informed earlier today that 2 days is way to long to wait for a new post. So, I'm posting.

Maddie is doing great. What a trooper. Both yesterday and today were fairly un-eventful. Yesterday the biggest thing was that she was constipated. LOL. I know you all wanted to know that, but hey if that's the biggest thing we have to worry about I'll take it. Today she was taken off the bili light again. I tried on a hat that my friend Alena made for her. It absolutely swallowed her head up. Too cute. Thanks again Alena for all the adorable clothes.

Kangaroo Day 4-15-08

Today we were wonderfully surprised to be able to start Kangaroo Care. I got to hold our precious little girl this afternoon for around an hour. It was HEAVEN. She just snuggled right down into my chest and slept. Her stats calmed down, except for when I moved. She got mad and pulled all her leads off, LOL. Already such personality. Jeff will get to kangaroo tomorrow, provided things are still going well.
Her labs all look good again today. No real changes. Still tolerating the breast milk, so they have increased again today. And she lost a little bit of weight today, which is what we want her to do. We would like to see her lose weight and go under her birth weight so we know she is not retaining IV fluids. Losing weight is normal.
Keep us in your prayers.

How I Got Here

4-9-08

It all began on Wednesday. Sometime during the day I began experiencing light bleeding. Early in the pregnancy I had experienced some complications and thought that we might be having a reoccurence. I called my doctors office and even though it was closing time the MA answered. She listened to what was going on and told me to wait for a call back, she was going to go talk to the doctor on call to find out what I should do. L&D, Office or go on with my day. One hour later she called me back and reported that the doctor was unavailable, but she had spoken with a nurse who wanted me to go straight to L&D. I was almost home, so I went in the house told Jeff, made arrangments for Hunter, packed up a few things and off we went.

We arrived at Baptist East, registered, and were evaluated in triage. My bleeding had just about stopped and everything else seemed fine. No contractions were registering and Madisons HR was great. The doctor was performing a C-Section and they typically observe patients for around an hour so they asked me to stay hooked up and relax until the doctor could see me. While watching TV and talking about our day the nurse came in and adjusted the monitors. She said Madison must have been playing with her cord. Her HR had become a little erratic but quickly repaired itself. The nurse stayed for a while and then went on back to the station. A short while later she came back and said that Maddie's HR had become erratic again and that she didn't think it was just Maddie playing with her cord. She put me on O2 and stayed to monitor the situation. After a little while they decided to put an IV with some saline solution to see if that would calm her down. Then they hooked me up to an EKG to differentiate my HR from Maddies. Jeff and I were obviously increasingly worried by now.

The nurse was going in and out of the room, bringing in other nurses to assess the situation. They informed me that I was experiencing contractions and shortly after I began to feel these contractions. They were every 3 minutes. They made the doctor aware of the situation and she consulted with the neonatologist that just happened to be here. They came to the conclusion that it would be safest for Maddie and me to bring her into the world and get her to a NICU ASAP.

They told us and less than half an hour later we had a beautiful baby girl. They placed me under general anesthesia and performed an emergency C-section. Jeff wasn't even allowed to be in the room.

The Kosair Childrens Hospital Buggy Team brought her in to us so we could meet her prior to her transport downtown. She was so tiny, weighing in at 1lb 4oz and 11 in long. The doctors told us that she was a fighter and looked good. She came out fighting and trying to pull the tubes out of the nurses and doctors hands. She didn't want any part of it.

4-10-08

We made it through the first night. Daddy, Mimi, Papa, Grandma and Papa all went to see Maddie in the morning. They said she looked good. Her right leg seemed a little blue compared to the rest of her body, but it blanched and refilled well so the doctors were not worried. She had a ventilator helping her breathe and needed a blood transfusion because she had a low hemoglobin count, but looked good. What a fighter. The nurses and doctors were all amazed at how well she is doing. She kept pulling her tubes out all day.

Meanwhile at Baptist East I rested for the morning and was able to take a shower. After my shower the doctor gave me a pass so I could visit Maddie at Kosair. I couldn't wait. It was great to see her. She was doing so well by the time I arrived that they were already talking about removing the ventilator and starting a "bubble c-pap".

It was scary seeing her there in the incubator, but at the same time I had a peace that everything is going to be ok. She is very well taken care of at Kosair. The nurses and doctors are wonderful keeping a close eye on her and keeping us informed of everything.

4-11-08

Maddie is doing so well, they remove the ventilator and start her on room air in the afternoon. She also has a "bubble c-pap" (a nasal device, similiar to what adults with sleep apnea use). She doesn't like this and pulls it out constantly.

I was given a pass to come to see her again, but because I was so exhausted after my first visit Jeff only allowed me one visit for about an hour today. My parents came in town, so we waited until they arrived to visit Maddie.

She is off the vent and looking great! Her right leg is no longer blue. The nurses had kept it elevated and this seemed to really help. She looks perfect! What a beautiful little girl. Blonde hair and blue eyes. She looks just like her Daddy.

4-12-08

Maddie and Hunter meet for the first time. Hunter is so excited. He tickles her feet and chest. Maddie woke up and looked at her brother. She even grabbed his little finger. How precious.

Maddie is still off the ventilator and doing awesome on the "bubble c-pap". The doctor is now talking about starting breast milk via n-g-tube (a feeding tube down her throat) tomorrow. They decided not to try today because her creatine count wasn't quite where they would like to see it. We will just have to cross our fingers and pray. Currently she is receiving IV fluids and proteins.

Her bilirubin count is where it needs to be so we might be getting to turn off that blue bili-light soon. Tomorrow they are talking about removing the "bubble c-pap" and giving her just a regular nasal cannula. WOW!

I am still at Baptist East and doing well. The doctor says I should be going home tomorrow. I sure hope so.

I get to change Maddie's diaper tonight. She had a dirty diaper and was throwing a fit. Who'd have ever thought I'd be so excited to change a diaper. I also got to hold her...well kind of. She was still throwing a fit after having her diaper changed and the nurse showed me how to support her head and back while she was laying down. This calmed her way down and she went right back to sleep. It was great, I didn't want to put her down. I just can't wait to hold her for real.

4-13-08

I get DC'd from Baptist East. The doctor gives me the all clear and we are on our way to Kosair.

Maddie is now without the "bubble c-pap" and has the nasal canulla. Her O2 stats are staying way up there and her breathing rate has slowed enough they are going to try breast milk today. She is given 3 drops/hour and tolerates this very well. She will need to be watched carefully, because if they give her the milk too soon for her digestive system she could develop a serious condition called NEC. They have removed the bili light today as well. Today she had another dirty diaper while we were there and Jeff got to change it. They also put a little dress on her and Jeff got to hold her like I did yesterday.

The nurse is telling us to be sure to mention Kangaroo Care next week to the doctor if Maddie is doing well. Kangaroo Care is a time when the parents can hold their baby on their bare chest for anywhere from 15 minutes to several hours. This skin on skin contact helps the babies to heal, grow and bond with the parents. Let's pray that we can start this soon. God has such a hand in this whole thing. The circumstances are just way to coincidental. From the very beginning He has had His hand in this situation and has taken care of all of us, putting the right people in the right place at the right time.

4-14-08

Maddie is doing great. She tolerated the breast milk well and they have upped her dosage to 1/2CC an hour. That's 12CC's a day! Her bili count went down a little so they put a "wallaby blanket" under her (another form of a bili light). She needed another transfusion today, but we are assured this is nothing to be concerned about and is farely normal. They are going to remove her arterial line today because they are not having to perform as many lab tests on her now. Everyone continues to be amazed at how well this little girl is doing. The physician assistant said that she is making all the other babies there look bad. LOL!

Oh! Most importantly. Madison had a brain and kidney ultrasound today. Both came back NORMAL! NO bleeding in the brain. This is HUGE! They will perform another brain ultrasound on day 30.

We were able to spend the whole day at the NICU today. It was wonderful not being on a time limit and just getting to sit with her, holding her little hand and talking to her. Hunter was able to come up after school and we sang to Maddie together.

We are meeting some of the other families at the NICU and it is really great to be able to share stories and talk with one another about our situations. I feel that this will be a great support as the days and weeks and possibly months go on.