Everthing is fine

Surgery went well. She hhas steri strips that hold her tiny cut closed. It turns out her little ovary was poking through her hernia. But all is well. We did do the official switch of formula. We saw the G.I doctor yesterday and Madison needed blood work to check her liver levels and if all is well there will be another medication off this list!! Fingers crossed! Sorry to those of you wondering about the surgery I hadn't had much time to update.

It is surgery day

Wow...its almost been a week since my last post I apologize! The day has come...it is surgery day. She has done well with the no actual food thing since midnight besides apple juice..Hehe she is over 9lbs and over 20 inches long now! Tomorrow we will be swicthing her formula to similac allmetum or however its spelled because sim. senitive wasnt enough. Well for all of you reading let's hope this proceedure goes well without any complications. Poor baby is getting her first spinal

It's been a while...

...since our last check in. Things have been well...very LOUD in this house. After weeks a countless calls that never got returned we went to Madison's pediatrician and pretty much demanded that her formula be changed because well Madison just wasn't a happy baby at all. I saw smile today I haven't seen in well over a month even if it was a sleep smile. I just don't think her belly was ready to digest that crap so now we have her on a sensitive formula for her belly...we started it lastnight. I'm going to try it for a week and see how she does. So we did the on air interview on the radio Feb. 18th and it went great. They ended up raising $211,000 for the children's hospital, how awesome it that!? The radio DJ said after finishing out montage he started balling...that was so sweet of him to share. I'm glad we got to share our story and that it touched so many people. Prematurity is all too real and is very serious. We started seeing Early Intervention to watch Madison as she grows and to make sure she's meeting her milestones. We also have med students coming over today, I guess her Pedi office referred them to us. Well I can't think of much else to say..oh on a totally unrelated to Madison note I'm thinking of auditioning for The Voice...maybe Hehe. Oh Oh and her surgery is rescheduled for March 2nd.

Surgery and some

Well surgery was scheduled for February 15th at 10:00AM but was cancelled because I and everyone else in this house didn't feel like she was too fit for it. She still has a cold and was just extra angry these last few days so the new date is pending. The Radiothon has been going on for a couple days now and our LIVE spot it tomorrow at 3:00PM we are excited! I also emailed the guy who did our montage to see if it was ready and if he could send it to me and he did. And it brought tears to my eyes. You never REALLY hear yourself talking about it unless its recorded and played back what a big difference that makes. Here is a link to it for those of you who are interested. http://www.zshare.net/audio/99090349baf82c38/

Its going to happen

My mother' Madison and I met with the pediatric surgeon and he feels its best that we take care of the hernia now rather then wait until something else happens. This is the same doctor that wanted to wait to do the "exploratory" surgery of Madison's belly to find the perforation..if there was one so I trust him very much so. Those of you who have followed from the beginning know that his call was the right one because she didn't end up needing that surgery. So I have to call on Monday or Tuesday to set up her surgery date. ALSO I've kept Madison off her oxygen more and more so now I'm just waiting to hear when we will get the actual sleep study in order to see when this girl will be off her oxygen totally.

Ultrasound just to check on things

So what they found from Madison's ultrasound is this...her right kidney is enlarged still quiet bigger than her left and now she may have a hernia. So we are going to be referred to a pediatric surgeon...seriously. How many surgical consults have we been through in the NICU? They can't even be counted. What can surgery do for an enlarged kidney?! I don't know.

Is this it?

Well we started today early (December 22nd 2011). I was at the hospital by 9AM in order to catch the doctors and find out when Madison was coming home. I don't remember if I said but Madison did really good with her surgery and was eating practically everything after not being able to eat for 12 hours prior to the surgery. So after an hour and a half a resident comes over and says "well are there any questions or concerns you have?" and I'm like yes "When is she coming home?" and she reply "I can't really say she is looking good but I have to make sure all the doctors are in order with it." I interrupt her saying she is taking pretty much all her bottles and that was the only thing we were waiting on pretty much. So we took her notes and said she had to get all the doctors together and talk it over. Meanwhile everyone and their mom is coming up to me asking when shes going home and I of course STILL have NO CLUE. So she comes back with another nurse maybe 45 minutes to an hour later and says "I have good news!" "We are planning to discharge her tomorrow." Boy was I happy but cautious because as you know in the NICU & CCN things can change very quickly. So I wore a smile in the back of my mind that night. I was told she had one more steroid eye drops for her eyes so she needed her last dose before she left. We estimated after 3:00PM she would be on her way home. So we left early in order to get our room extra cleaned set up her playard and buy more diapers, pretty much get everything situated. So we went back that night visited her fed her left and that was that for that night.

Surgery No. 2

Today started with an early wake up call. We showered got to the hospital and visted with Madison a little after 8:00AM only to find out once we got there the surgery was pushed back an hour. So instead of 9:30AM it was 10:30AM I didn't mind much I got extra time with my babes. When we got to the NICU and to her bed she was screaming her little head off : / midnight was her last feed so she hasn't eaten much so I held her and tried to get her to sleep a bit before he surgery and she did. She sleep through transporting her from bed to bed and slept through our walk to the other end of the hospital where she was having the surgery. When everything was situated they said it would take an hour so it would be done by 12:00PM. It was 11AM then. So we walked back to the other side of the hospital where the cafeteria was grabbed some food and tore it up. So then it was about 15 minutes until surgery should be finished so we walked back slowly sat in the little room to wait. So 12PM came and gone. By 12:10PM the doctor came in and said there were no suprises and the surgery couldn't have gone any more perfect and that they are waking her up now. Keep in mind she had to have a breathing tube put in for the surgery which I didn't like at all. So all the nurses and people that were with us to take her to the operating room was standing in the hall waiting for her to come out. One nurse said "What they can't wake her up or something?" So I heard that and was like whatttt? Then I overheard another nurse saying "Do we need to get respitory to help?" So after that a nurse came over and said everything was fine they extubated her and they are just waiting for her to wake up more. So I was like thank you for telling me' and she was saying that she was wondering why they didn't tell them that until after 12:30PM. So we waited she got back to the NICU and crying...poor hungry baby. So after that she fell asleep again so once she wakes up they will start half feeds and gradually increase...again. So I will be back there later on and hope to feed her a couple feeds tonight.

The Overnight.

It was nice. Kind of short lived because she had to be brought back into the nursery because she had a doctors appointment at 6:00AM to get her eyes checked out. So we gave her back after her 3:00AM feeding. Which by the way she took all her bottles from me so I fed her 3 times. I didn't sleep at all. I was up that morning at 4:50AM for work on Sunday and still up at 5:00AM the next morning(Monday). It was either her monitor going off for no reason or her crying but it was great just being there alone in a room with her. I did her meds a couple times and it wasn't too bad.

Anyway the doctor's appointment...not so well. Here eyes are getting worse. So at around 4PM we went to meet with the specialist and he of course was an hour and a half late...anyway bottomline she needs surgery. She is borderline for REALLY needing the surgery and is at the point where they don't want to do nothing and eventually have her retina detach and ultamitaly be blind. So all the good feeding she has been doing will be stopped today inorder to be prepped for surgery and we will have to start all over again BIG BUMMER. So tonight she will spend back in the NICU and they are going to start an IV...all the things we moved away from. Wednesday morning sometime will be her surgery. I'm not too worried she has gone through much worse.

ANYWAYS here are the Christmas pictures I promised!

Not now.

So not surgery isn't going to happen. For now atleast. The 4 to 6 weeks after her belly drain was put in would be the 27th but it is called off for now. Last week when I saw her I believe on Monday the nurse was like oh on the 15th or 16th Madison had a large bowel movement...and I was like no one told me! Now that is good news seeing as she hasn't gone in atleast 6 weeks. Well now its obviously have been a bit since then but that is good we are all hoping it will continue that way but who knows. Anyways the surgeons think she is still too small and want to wait it out. Her stomach measurement have been reading at around 24cm as she's been gaining weight. Yesterday she got up to 2lbs 9ozs and her belly measurement was near 21cm which is good too. She is back on low oxygen. Last night while I was there they put her at 23 oxygen and the vent was set at 16. Those were close to the settings she was at when they decided to take out her breathing tube...hopefully she will handle it better when they take it out again. Also I forgot to mention the night before last Madison has been getting even more active with moving her head a lot and pulled out her breathing tube "ah." They tried to keep it out and see how she would do but her heartrate got too low I guess and they re intubated her. They also highered her caffeine they thing she was out growing the smaller dose so this will hopefully help when the time comes. The hubby starts electrical school today which leave me home. So I'm hoping I can get back to sleep for a bit more.

On the book for Oct. 27th

Nothing too much has changed since getting her breathing tube put back in. She was really high on the vent a bit lower on oxygen but now its starting to level out and they are weening her again. They are hoping for Oct. 27th as surgery date and earlier if they can get it. I was taking some pictures of her yesterday and she was all looking around and reaching her hand out like she wanted me to touch her. So I did I put my pinky in her little hand and she would squeeze it every now and then which was nice. I liked that she was alert and her eyes were open while she squeezed me. She had a new little hat on and I rubbed her head through the hat and she'd kind of closed her eyes a bit sooo nice. BUT anyways here are a few images for the mind :)

Saturday or Sunday...

The nurse informed me tonight they are thinking of taking out her breathing tube and switching her to nasal oxygen which is completely awesome! She was only on 17 for the vent so I guess she seems to be breathing a lot on her own now and just needing a bit of oxygen support :) the date for the surgery is still unknown and this information came as a shock. I was expecting these changes to only be made after surgery but it seems they are happy with how she is progressing respiratory wise which makes me happy! That was my quick update for the night.

Awaiting surgery date confirmation.

So the doctors and everyone (after the holidays + vacations) they will have a date next Monday. They went down a bit on her setting 28 oxygen and 22 on the vent, awesome! She is about 3 ounces shy of 2LBs. Now it just seems that once the belly is resolved she can't really eat and hopefully grow a lot more and maybe even get her off of the breathing tube and vent.

The verdict.

After seeing Madison yesterday and speaking with the nurses and doctor the only option left now is surgery. The contrast still isn't moving and still no poop. I found out yesterday that the IV nutrition they have her on is now messing with her liver so she is taking a new medication for that...the longer she is on that the more it will mess with her so as soon as the surgery is done hopefully they can start feeding her. They wanted to wait 4 - 6 weeks since the drain was put in her belly so the irritation can go down so that brings us to the middle of October. This is going to be her 3rd surgery : / I hope it will be the last and everything goes well after.

The day is here.

Tonight was interesting to say the least. We stayed in the parents sleep "suites?" They weren't very sweet. The room was the size of a closet and a half with a twin bed to share and a nightstand. There was no personal bathroom just literally a room. But anyways Madison was cute :) so after no sleep and tossing and turning and getting up to go to the bathroom at 6:00A after maybe falling asleep around 2AM I get all call from her nurse around 7:35AM saying they will be taking her in for surgery for 8AM. So we rush down there everyone is doing their thing to her and we didn't even get to visit...which was the whole point of us going down there so quick...was very irritating. So they got her all set she went in and was out a little over and hour later. They said everything went well and she did good. So now we are waiting to see her.

Off to Boston we go.

It is official Madison will be headed to Boston for her surgery and my husband and I will follow. Supposedly we can stay at the hospital which is good that way we can be with her. She looked to beautiful when we saw her yesterday. We saw so much of her eyes this time and for quite the while.I took one of the best pictures "with my phone" unfortunately...which I could have used my Canon without blinding her with the flash BUT those days will come. My husband changed her diaper this time...was funny to watch. He fed her a bit of colostrum and I fed her the other half...it was weird when I was feeding her, her eyes were open this time and she was looking at me...I never had that before. When the nurse was doing things and getting her situated she was crying :( but without sound because the tube is between her vocal cords...still sad to see. I saw her belly and to my husband and I it looks terrible...to the nurses its a tad bit better? I don't know I just hope the color gets back to normal and it comes down to a more normal size...she has no belly button because of how much it sticks out. But she is more stable now it seems to the meds for the infections seem to be working. There hasn't been a positive blood culture since the 12th. She can tolerate handling better. Her respitory settings are lower than before. Now they seem to be in the 20s and 30s. We are hoping after this surgery she will start to eat and handle it well.

Update here!

My husband and I have been sick for a little over a week which means we haven't gotten to visit Madison which is do to the lack of real updates. We are going to see her today but I thought I should update since I just got off the phone with on of her doctors. Respitory wise she is still good, head scans still coming back negative also good. They did remove the drain from her belly and are currently kind of waiting to see with that. They waited a week did a follow up echocardiogram and are still seeing the PDA (murmur) as being a moderate size and also finding a chamber of her heart becoming enlarged because of it. So because of her belly she can't try the final round of medicion they want to send her to boston to surgically ligate it, and well it will have to be done. They figured while she still isn't getting feedings they would take this time to send her out, get it fixed and then try and feed her. I've been told she has grown an inch which is awesome. I wonder if she will look any different since I haven't seen her in a while. There will be more updates to come.

Possible exploratory surgery...

I can't remember if I posted about how Madison's tummy is extended and they found a possible fungal ball or cyst by her liver BUT her blood culture has been positive for 2 different bacterial infections and she's been on the best antibiotics for it and there hasn't been a change. On top of that she hasn't pooped in over a week so if something doesn't happen by Monday they are thinking about doing exploratory surgery to see if they can find something they could fix. They think it could be a bowel infection. The positive for today she is still stable and pooped on her own *yay* So hopefully things will be looking up now. Meanwhile they are waiting on results from her belly scan earlier to see if things have changed and are looking into maybe a different antibiotic that could help. I did decide today after 3 weeks of trying, that this breast feeding well pumping thing just wasn't working out for me. I have about 70 bottles at the hospital with my drops in them and that should hold her off for a little since she isn't getting any feeds now and when she does they will be extremely tiny so they would work out for her in the beginning. I just can't do it and I do feel bad for giving up but its so stressful for me. I would have to run home every two hours to get nothing in return for my time and effort. I feel like it would be a different story like I said before having the baby with me. So next pregnancy (that will be fullterm) I will try again and hope for a different outcome.