Friday, September 30, 2011
So today started as a nice venture to ihop to get our grub on. We invited the husbands grandmother, mom and brother and the plan after eating was to go visit pretty eyes :) so we both go in first to get an update. Turns out the contrast hasn't moved at all and that means no pooping either so now they are talking surgery. They will reasses that tomorrow, if they want to when, where and how. Then the nurse was talking about kangaroo care and saying how its good for the baby and all and I was like yeah I've heard. So after about 10 minutes she was like I want you to do it and I'm thinking ummm...sure. She is like if you want to we like it to be for an hour so I was like okay, thinking to myself this isn't going to last at all. So they plan was while I'm kangarooing we would let his grandmother in and switch to mom. So I get in my gown walk over and sit. The nurse brings down the side of the incubator picks her up has the other nurse follow her with the wires and the nurse puts her on my chest she was so warm and I could cry. I felt her little hands grabbing at my chest and her little head moving, then as soon as it came I hear she's extubated in a concerned void and I'm like what does that mean they grab her put her in her incubator calls over one of the respiratory people her stats went up and it turns out she wasn't extubated (breathing tube came out). I figured it was that her tube got moved which messed up her stats but it turned out she was good. The experience was nice until my heart sunk. I thought her heart stopped or she wasn't breathing. It was bitter sweet. Well the sweet part comes first :) I' starting a baby book for her I will post pictures eventually. I'm also going to start selling customs baby books on ebay too :)
Madison made her journey home yesterday after 10AM and was back at a little after 12PM. Her PDA is fixed :) now the focus is on her belly. They put a contrast solution and did an extra to see if the solution would flow through nicely. Well the contrast flowed and then came to a stop. It is good that it didn't come outside the intestine so she doesn't have a perforation (anymore?) So their plan last night was to try a suppository to try and get things moving then did it in Boston and nothing so they tried back home and said if that didn't work they would try an enema which I think would work better...I hope it did. That is best case scenario. Worst case scenario another surgery...if the intestines did have a whole and healed over the scarring may have narrowed her intestine so much that nothing can pass through so in that case they would have to remove that portion and maybe reattached but that is unlikely because they wouldn't want the scarring to do the same thing so they would (I forgot the medical term) but a bag on the outside of her intestine to poop that way until she were a bit bigger to reattached her intestine with out that scarring issues, that is what I'm hoping DOESN'T happen whatsoever. So when I call for an update today I'm hoping the enema worked beautifully...
Wednesday, September 28, 2011
Madison did well with the surgery and there were no issues. I kind of feel like the people here really sugar coat what they say. The first night here which was Monday we witnessed her destating a few times. Then yesterday before surgery they were like she had a great night and was awesome whereas our normal hospital nurses would have been like overall she was fine BUT this and this happened...you know? Anyways I'm glad she did good. So after seeing her we decided to check in to the hotel early, shower and take a nap. That nap was a little over two hours Haha. We were supposed to meet up with the hubby's dad and step mom once they got to Boston and we were to meet them at the hospital and they said they were going to treat us to dinner, awesome. Our hotel is about a half hour give or take. So he calls them to see when they are leaving to come or if they are close and it turns out they've already seen Madison. So I was like okay...weren't they supposed to call? We could have been ready so when they got here we could leave. So hubby got up got dressed I stayed in bed a bit longer...the sleep made me extra tired. So we got on the road started driving they call and say well we are going to grab something to eat and the husband hangs up. So I'm like what are we doing then? Call back and see what's going on. So he calls back and his dad says oh it looks like we are going to miss you guys, really? So we wasted gas and time waiting on them when we could have been enjoying the city. They originally said oh we will be there in 3 hours and left much later. I was so pissed you don't even know.
Tuesday, September 27, 2011
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.
Monday, September 26, 2011
|Today, 38 days old before getting moved into the portable incubator.|
For those of you who always wondered "What does this Madison look like anyway? Here are a few photos from the beginning until now.
|August 19th, 5 hours after birth midnight August 20th|
|9 days old|
|12 days old|
|4 weeks 5 days|
Sunday, September 25, 2011
Today is the second time we've had to change our hotel arrangements. First was because we didn't have the the $500+ to pay to stay in a hotel for a week in Boston, to be with Madison. That is every penny we have. So we lowered it to two nights which comes to about $270 and that is a half hour from Boston. The next change was today. We were told yesterday she might not go to Boston on Sunday because they changed the minds about it because of her belly and all that then they got a call from the hospital saying they have no beds. So instead of going up Monday a day after she is there we will go up Tuesday because she is now "supposed" to go Monday but again that can all change again. Another thing that aggravates me, your a "children's" hospital and have a place for parents to stay but can't guarantee the room and the room only has one bed for one of the parents to sleep on...seriously? AND there are near by hotels with a reduced rate for parents/families to stay at but the rooms still even then are $200/night...ridiculous. So now I can only stay a couple nights a half hour away from her because the hospital doesn't have the right set up or can for sure say we have a room. The social worker even called yesterday and was like yeah we had to give your room away, boy was I glad I decided we weren't going up the day she will be going up. This whole thing is really just a big mess. If it were up to me I'd say leave her here until her belly is under control and send her when she is a bit bigger, but really what do I know...
Thursday, September 22, 2011
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.
Wednesday, September 21, 2011
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.
Sunday, September 18, 2011
I really miss being pregnant and I can't help thinking about our next pregnancy. I never fully got to enjoy this pregnancy at any point because from 16 weeks on every doctor appointment was a constant let down and I knew it was coming. I remembered thinking to myself as I worked overtime one night, I'm not going to be coming back to work...and it was true it was the start of strict bedrest for me. After having my babies and talking to the doctor and him saying "I want to plant the seed about birthcontrol," saying it wouldn't be impossible for me to get pregnant now fairly quickly because I could have a period in a couple weeks. I'm like well I don't get periods ever without being medically induced, so guess what no birth control is happening here I would love to be proved wrong but unfortunetly I doubt I will get pregnant on my own, it would have to take another FET I'm sure. But on the otherhand I always have a glimmer of hope. I was talking to my husband the other day saying if we didn't go through with IVF and FET at all I don't think I would've known I was pregnant, and if we were to get pregnant on our own because of everything that has happened I would be terrified. So the plan would be to check every month ha but then I would drive myself nuts doing that. Its a lose/lose situation really. As for a Madison update...there hasn't been much her once negative yeast culture has come back positive again so they switched her meds back to everyday instead of every other which I don't know why they did that in the first place...whatever. They think the murmur got bigger, oh joy. Her belly is still relatively big and she hasn't pooped on her own since the last time over a week ago. She is no breathing less on her own when she should be breathing a bit more and had to have her settings turned up a bit as of yesterday otherwise she is pretty stable...I really need something to be good that is more consistant.
Thursday, September 15, 2011
Yesterday was good for Madison. Yes she still has the heart and belly issue but overall she seemed god. Her oxygen is still low on the machine awesome. They switched vents and apparently she loves that one. On the only one every breath she took it would shoot in 90 breaths for her which was very high. On this machine I guess she stopped breathing on her own for a bit which they didn't say was bad because she did need some rest. When she does breath on her own it is between the 20s and 40s which is pretty much in normal baby range. Her blood gases where coming back ideal now which really wasn't happening before everything happened so they think between the new vent and her recovering from the infections she seems to be tolerating more. The nurse said she can pretty much do what she needs to do to her leave, come back hours later do what else she has to do and leave again. She says she can pretty much leave her alone. Her belly did go down a tiny bit. Unfortunately we can't go see her because my husband is sick and I may be getting sick also...I'm hoping everything continues in this direction because it looks like a good one.
Wednesday, September 14, 2011
First of all I want to thank you all for your comments, thoughts and prayers. After talking with the doctors to try and understand the situation a bit more with putting the drain in her tummy they did complete their goal of removing the infections from her blood by draining whatever was in there and the proof was in her negative blood cultures. The next goal is to get this belly thing fixed. They did irrigate her belly again and the fluid came out clear, which is good and they are hoping whichever puncture it came out of hopefully has sealed itself up. They also made sure I knew that before she gets better it will get worse. So I'm hoping the whole belly looking worse is it. The nurse and doctors also failed to let my husband and I know that they hear the heart murmur again...I wish I would've known then. They can't do one more round of meds or surgery on it because of the state she is in with her belly. It seems once there are somethings out of the equation others seem to work their way in. I also found out while her oxygen settings are low her vent is high...had no clue about that. The important thing is with all this she hasn't crashed or become horribly visibly sick which is a good sign, I will hold on to that. So we wait and hope the belly will fix itself.
Tuesday, September 13, 2011
The central line ended up getting put in, good. The draining helped with the infections, good. The belly got bigger and is even more discolored then before...horribly bad. She is stable through all this but all those good things mean nothing if she is still very very sick and no one knows what's going on. Her nurse even said she doesn't know is she can come back from this...I don't know what I'm going to do...what can I do. She's gone this long so she has to make it. If you covered her belly you wouldn't even know she were sick otherwise. I just hope if the surgeons decide to go ahead with exploratory surgery they find something they can fix and Madison make it through. We have plans for her to come home. We have plans of being her mommy and daddy...to show her the world and teach her how to be a good person...I want that chance. I'm writing this as we drive to the hospital to meet with her doctor.
Monday, September 12, 2011
and no change. We just got off the phone with the surgeon and her belly and infections aren't getting any better. From the ultrasounds they can't really see any free fluid so they don't want to risk it with exploratory surgery on her. Based on what they "think" they would rather put a little hole in her belly with a drain to see if anything comes out. They "think" she may have a hole in her intestines which may be causing a build up which is keeping her blood cultures positive and not letting the antibiotics do their job. So we okayed that procedure. They did it and she did well with it. With the drain they did get a lot of discharge and pus which could be a good thing, since really nothing is supposed to be in there. That could be the source of her infections. They switched antibiotics and are hoping she will start getting negative blood cultures since they were able to drain some stuff. Her belly did go down 1cm afterwards which is good. They called us early today as ask permission to bring Madison to the OR to try and get a more permanent IV placed because all of her other IVs that have been placed have blown or just aren't good and don't last very long. I was hoping she got her Daddy's veins, but she got mine instead. So we agreed to that after the risks were told...possible punctured lung...blood cut off from her arm but she needs a way to get the meds she needs. After a couple hours they called back and said we we want something more temporary because her blood culture is still positive and we don't want to keep housing the bacteria in the line because then we would be going in circles, which is true...I'd rather if possible her culture be negative before anything more permanent is introduced into her blood. So that is where we stand.
Friday, September 9, 2011
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.
Today was the day. It was set. Friday September 9th @ 11:00am would be the time we would say our last goodbye. I woke up at 7:00am to my antibiotic pill alarm and couldn't get back to sleep after taking it. The time of our actual wake up was 8:30am, the time I woke up my husband. We started the day with a nice shower, waited for my parents to get here to start food for after the service and got ready. My husband started writing a poem for Dexter and let me tell you reading it almost made me cry, but I couldn"t I just did my make up and finished getting ready. Once my parents were here we waited for other family to get here so we could follow each other to the cemetery. 10:45am came along and it was time to go. Since it wasn't a "normal" funeral we didn't get those flags everyone gets to put on their cars to be able to go through red lights and all, we got the frustration of trying to keep up with everyone and stay together. Luckily the cemetery isn't too far from our place. So we took the right into the cemetery then took a right, and another left and I see this white tiny box all propped up, and my eyes start swelling with tears because that's him right there in the box all out for everyone to see. This is the last time he would be around us physically. My mom brought with her butterflies to let go along with a few balloons and roses for myself, my mom, dad and my husband. The funeral director asks us if we want to be here for the burial. Of course I say yes...If I weren't it wouldn't feel finalized to me. So it begins with my husband reading the poem and it makes everyone bawl. It was truely a great poem...publish worthy. He made it so it sounded like Dexter telling everyone how he feels and that things are fine. After that we released the butterflies. My butterfly didn't want to leave but eventually did. We released the balloons. I didn't say anything aloud but did in my head while releasing the butterfly and balloon. My husband actually was given the chance to but Dexter into the grave. I told him he should put his poem in the grave with Dexter so he dropped it in and we each dropped our red roses in and we watched as the grave was covered with dirt and grass was put back over. Now all we are waiting for is his stone to be made and put on his grave. I'm glad my baby boy can now rest and be at peace. Dexter Rylan will be forever missed.
After weeks of just going and focusing on other things, worrying about this and that. I'm burying my child. The first I gave birth to, who was alive...who was put through hell. When I finally had that chance to lay down to try and get to sleep that's what flooded my mind. I started crying. Those days in labor which I had no clue about really. His prolapsed cord, pushing through no contractions and him actually being born. Seeing him on ultrasound that last time to check progress with my pushing. NICU grabbing him to try and stabilize him to bring him upstairs to the NICU and me hearing how his heartrate is low and how it keeps dropping. I knew as soon as he came out I would loose him. And when he was born I started bawling...because that was it. NICU came down a short time later and said this would be the time to pull support because he isn't responding well at all. So we went up to see him, we decided and that was that. We held him, family held him and he was gone. They told us he was pretty much in a coma...he didn't respond to anything physically. He was born August 16th at 2:48PM and was gone by 5:20PM. I remember having him brought to our room and just having him lay next to me on the bed...he looked so sweet and peaceful. He looked so much like my husband. I can say, I am glad he held out as long as he could inside me to give his sister a chance at life, and I know he's watching over us all.
Thursday, September 8, 2011
I saw my doctor (the one who delivered my babies) *love him*. It was to check out my incision. He said he doesn't think they should be packed anymore, just to keep it clean bandage it and let it heal. Awesome. But now I miss my nurse :/ we also talked about "birth control," eh I'm not really interested. I think it would be great and amazing to make a baby on our own but really I'm not counting on it working out that way. We also talked about a permanent cerclage for the next pregnancy and he was completely against it and any cerclage unless with this "singleton" pregnancy there is reason to believe my cervix will act up...so we will see on that. I also asked about a prescription to help with my milk supply and he's said its been years since he's given anyone anything because he really hasn't seen improvement with any of the medications and the side effects of them aren't good, but he will check into it. I forgot to ask him the all important question too, when is it okay to resume activities? Haha its been so long! BUT I guess I will have to wait to ask that Sept.19th at my postpartum visit, boo. I really think I'm at the point of giving up. I'm not pumping at night only during the day but even with that I should atleast be getting 5ml every pump...I'm way below that. The consultant said to pump through the night but that only stresses me out thinking about it and I'm trying to get all the sleep I can. I told her I would try it until I meet with her on Saturday but my son's funeral is friday and I have way too much on the mind. It would be different if Madison was here and I would have to get up and feed her, otherwise I have no motivation...ugh.
Tuesday, September 6, 2011
We saw Madison earlier in the day and I was told no changes really. She was on 38 for oxygen which is great. She's still on all the antibiotics, we had our first negative blood culture yesterday and are hoping to keep them negative to try and get another PICC line in since having to take the first once out when all this happened. Anyways back to the call. It started off as "I don't know if anyone went over the belly ultrasound with you or not.." um no the did not. Well we found a fungal ball in one of her kidneys which is constant with a yeast infection because the yeast usually collects somewhere. I then asked so as she is treated with the antibiotics will it break down and she said yes. It will probably come out in her urine so they will be looking for that. She also has some fluid with connective tissue which they can't say for sure or not if its an absist near her liver. So as you can imagine when that number popped up I thought the worst. She is still alive and fighting and isn't deathly ill so I'm okay as long as things are being watched and worked on but really when I was there why didn't I get the low down....
Monday, September 5, 2011
I never did get that call from the lactation consultant. But while we were visiting Madison the nurse got in touch with one and of course there was only one there because of the holiday so she couldn't come up and see me but I did get a chance to talk to her over the phone. She suggested I'd try massaging my breasts...which I do before I pump...and nada. She said I could try mother's milk tea, which I haven't yet seeing as I'm not a big tea fan so I chose to try funugreek. I figured I really don't have to worry about tasting those so why not give it a try. I picked some up today. She also said I could ask my doctor for a prescription I think she called reglan...so I will on Wednesday when I get my lovely incision checked out. I also did order the smaller breast shields which I hope works out. Kind of sad the hospitals don't carry the smaller size...but have mini things for preemie babies go figure. Well anyways we saw Madison he belly swelling seems to be going down some. There was a blood culture that did come back negative and some other blood tests showed her white blood cell count up a bit so no huge changes but we definitely know she's fighting something. I was told they had to bag her last night and this morning which kind of worries me a bit. For those of you who don't know what that means its when they have to manually pump air into her lungs without the use of the machines. Scary stuff but she seemed okay while we were there for the most part. Her heartrate did go down drastically at one point but the nurse removed some fluid that was in her tube and she was fine after that.
We went and saw Madison yesterday and dropped off the tone of little bottles of drops collected from the day we didn't see her and we found out they switched up the other antibiotics to take care of the "new" organism growing but now she has an extended tummy, which "could" be from the new infection but they aren't sure so they will be watching. I believe they did an x ray or ultrasound to see her tummy but could see her bowels so they don't really know what's going on but even then so she's acting like nothing is bugging her which is good. The nurse there tried to get in touch with the lactation consultant because I "should" be making a lot more milk then I am. I think it maybe the shields I'm using. I think they may be too big so I ordered smaller ones which I hope help. Ah well I'm waiting to from her hopefully she'll call...I really don't want to give up yet.
Sunday, September 4, 2011
Yesterday wasn't too bad of a day. We woke up, showered, waited for the nurse, pumped and was on our way. Before leaving since we ended up being home longer than expected I pumped right before leaving so I finished set my tiny bottle down with my droplets in it and of course I would knock it over and spill what little I had to offer...so maybe it wasn't crying but more like anger. So what do I do? Start blaming myself again and I end up in a horrible mood. After that we do leave and go to the park we were married at...it will be two years October 31st. I was hobbling along slowly but it was nice to get out and "hobble" for a bit. So we got back home pumped and my husband's parents came over brought KFC. His brother was nice enough to get us into a movie free later that night. We ended up seeing Crazy, Stupid Love and it was great! Made me feel good aside from when I was laughing and it hurt to. In the midst of everything we didn't see Madison but each time we called to check on her she was fine except for another organism they found growing aside from the yeast but still none of it seems to be bugging her.
Friday, September 2, 2011
We got up early today to get Dexter's stone situated. The phrase we originally wanted on the stone didn't fit on the small piece we have to work with. We came up with "never forgotten, always remembered as the little boy called to heaven." So we ended up having to shorten it to "never forgotten, always remembered," and there will be a little boy angel in the clouds in the corner of the stone. It is pretty black granite. But of course since there wasn't a set date with the funeral home there cemetery has no record of Dexter which means the stone orders can't be through. So we have by September 15th for the stone orders but the Dexter needs to be buried before the stone can even be set. So everything is in rush mode...but what isn't these days. Atleast they have what I want and it is paid so once things are together everything can get going quick. Overall I didn't have too bad of a day. After that was done the nurse came. I didn't even think about pumping so I didn't pump until after 2pm today and I got my usual bits. We went to go see Madison not much of a change oxygen went up slightly, usual. She had to get one of the IVs in her taken out and instead put one in her poor head but it doesn't seem to be bothering her. She had her eyes closed the whole time but was moving around like crazy, so I took a little video of her but of course she doesn't move as much as she was not being recorded. The male nurse asked me how pumping was going and I told him the truth. He said I need to relax more and pump every two hours...how is that even possible? Its like as soon as I leave the house we have to go back home to pump before we leave again. Its hard for someone who's been on bed rest for 2 months to stay home for really relax for that matter. It seems the more I pump the less I get. Why is this so difficult? I mean maybe it would be easier if she were home because as soon as she were hungry I would feed her, but knowing your really not feeding its awkward to be doing it like that.
Thursday, September 1, 2011
I'm starting to think maybe I do have this depression thing people talk about. Today started okay but then got worse. After the visiting nurse it kind of went downhill. I pumped and got literally 2 drops of milk. We went out a bit saw my father at work the husband applied for a job. We came home to pump (trying to keep an every 2 hour schedual or as close to it as possible) so I pumped and nothing. I barely sleep at night because I have to wake up to take my antibiotics throughout my night so I try and pump as much as possible during the day. That kind of brought on everything. What kind of mom am I that I can't give some milk to my daughter and the fact that she's there because of me and Dexter isn't here because of the same reason. And my mom is still on me about oh you need to be there more for Madison...but what if I'm sick right now I'm doing all I can I feel like. I know I don't call to check on her every second or am there every second...maybe I should be I don't know what's wrong. Maybe it looks like I don't care, I do but maybe I'm still trying to keep myself no so attached encase something should happen and I don't even know why I'm saying that because I know she's going to make it. I did go see her today...only once :/ she didn't have a bad day her white blood cell count went down which was good. Still on the low setting for her oxygen and nothing much has changed otherwise. So today was a good day for Madison. On a sad note we have to go down to the memorial place to pick and design the stone for Dexter and figure out a date and time for his funeral. How do you pick these things? When do you know your ready to say goodbye?