Cross-eyed. I love it when babies do that.
Sadie sleeping peacefully on "The Floor" at the hospital - actually dressed for the first time!
Sadie and her Big Sister - Katie takes such good care of her!
On Sept. 4, 2006, Madeline "Sadie" entered the world with a congenital heart defect known as TGA. This blog began as a way to chronicle Sadie's struggles and triumphs, her sister Katie’s adjustments and our reactions. But it turned into something else - a way to reconnect, to spread CHD awareness and to vent about parenting, work and daily life. Now that I've started blogging, I can't seem to stop - I enjoy writing here, and it keeps me slightly more sane. Slightly.
I thought I'd throw a few photos up now that we're back home!
Sadie's been extremely cranky since we got home, but it let up for a few hours today. I'm feeding her every hour and a half, and that seems to keep her from losing her cool. This child can throw a tantrum like I've never seen before. I'm not sure if it's gas, methodone withdrawals, overstimulation, understimulation, hunger or what that is driving the fits she has, but she's pretty much inconsolable when it happens. Katie was a super easy baby, so maybe it's just this one's personality and that I got a bit spoiled the first time around. Of course, I can't be mad - just a week ago I was waiting to hear her first cries. This baby has been through so much. But, still, is it too much to ask for a break from all the constant drama?
Katie's been pretty tearful, too, which is also understandable. Ooops. Sadie's cring again... more later.
After three and a half weeks, we're finally home! They finally let us go yesterday afternoon, and I've never been happier to set foot in our house. I love so many little things right now - a kitchen sink to wash things in, and a private bathroom. A shower that I'm not afraid to get into without flipflops on. Ahhh...
Of course, the best part is having our family of four together at last. Katie is adjusting pretty well, all things considered. Jason's not throwing too many tantrums either. We're off to a good start.
Sadie is doing great - she's eating like crazy (yesterday we were on a 10-15 minutes every half hours schedule - today we're down to every 1-2 hours) and is a typical baby. She's been extremely fussy tonight, though. I haven't had a minute to myself since we walked in, but I'm loving every second of her. Last night she even let me get 3 straight hours of sleep in a row at one point.
We had our first pediatrician's appointment today, and it was wierd to realize how "old" she is already. The nurse asked if this was our first appointment - I said yes, but when she saw her birth date she said it was more of her 1 month appointment. It's odd to think of her as being almost a month old, as I've only really "had" her for a week or so. The rest of the time she was comatose and I couldn't do anything. It all still doesn't seem real, except that when I look at the scar on her chest, it comes back in a rush.
The appointment went well, and we will have a follow up next week, as well as weekly follow-ups with our local cardiologist, Dr. Albrecht. Our main concern is to put weight on Sadie - she's down to 7 lbs 3 ozs, which is 7 ozs below birthweight. Since she won't take a bottle, the docs are concerned that she's not eating enough. I think she's doing ok, but time will tell. It's hard to tell with her as to how much she's getting - we don't have many diapers to change yet, which concerns me. I know how much I "produce" and she seems to be using all of that, so I think she's getting enough, if not more than enough... so I don't know why we have such little output. I think I will worry the rest of my life over this one over every minor incident.
I'm making no sense whatsoever tonight (mainly because I think I've clocked about 8 hours of sleep in the past 5 days), but wanted to put up a note since I'm getting bombarded by calls asking why I'm not keeping up the blog. I'll be keeping it up for a while, no worries. It's just that right now we're overwhelmed with moving back into our house, getting used to a newborn all over again, dealing with a rightfully emotional 4-year old and trying to process the joy, shock and exhaustion of finally having Sadie at home.
I only have a couple of minutes as we've moved to "The Floor" and I have to be in the room with Sadie all the time now. She is doing extremely well - so well that we expect to be home by tomorrow evening!!!
It's been a challenge to get her to eat. They wanted her to start on a bottle so that we could monitor how much intake she had. She was also on a nasalgastric (NG) tube, and they expected her to go home on it. I've learned how to insert the tube, do gravity feeds, etc. Then, yesterday the attending came in and said to remove the NG tube and try letting her feed on her own only. She did not like having to do so much work for food, and by the evening she was exhausted, hungry and too irritable to eat. The cardiology nurse finally asked if I'd tried going to breast yet, and I told her no - that I'd been waiting for more than 3 weeks for the chance to do so. So, they let me. And Sadie latched on PERFECTLY and nursed for several minutes straight. Since then, she's been waking on her own to let me know she's hungry and nursing at breast like a champ. I even managed to convince her to use a bottle for a bit, which she had rejected before.
Sadie was slated to go home today, but they want to hold her one more day since she lost so much weight yesterday. Cross your fingers for us - if she stays the same weight or increases we are OUT OF HERE!!
The last few days have been pretty hectic around here. Sadie is doing very well - so well that she's moved out of the PICU and into the acute care pediatric wing of the hospital. We've moved into a room that has 4 walls (oooooohhhh) and a private bathroom (aaaahhhh) and a closing door. Very nice digs after being in the PICU for close to three weeks.
Sadie is officially 3 weeks old in a few hours, and is becoming a "normal" baby already! She tracks things well with her eyes, is eating pretty well and is smiling up a storm. Those smiles make my heart stop every time I see them. She's so pretty I can't stand it. She looks so different from those early days it is amazing.
The only drawback to our new room is that there is no internet access, and that I need to be there basically 24-7. They have volunteers who come in to sit with the baby so you can do things like shower or run out for some food, and nursing students who help, too (how I'm on the computer now). So, sorry to say, I probably won't be able to post the new pictures of the new, improved Sadie for a few days.
Katie had her big birthday party yesterday, and it was great! It was my first time away from Sadie for an extended period, but Kerinda (my sister) was with Sadie, so I didn't worry. Of course, they picked the time that both Jason and I were away to move Sadie to the new unit. Anyways, Katie had a blast at her party, and I think the other kids did too. It was my first time at the Richmond Children's Museum, and I was really impressed. It was fun to watch both sets of the kids grandparents playing in the "shadow room." I would highly recommend having kids parties there - they did an awesome job, and I didn't have to do a thing but sit back and enjoy. It was great to see friends and family, too - I enjoyed it as much as Katie did, I think.
Today's big news is that I gave Sadie a sponge bath on my own for the first time. I got to check her all out, which I'd never done before. She's so skinny right now that I constantly worry she's not getting enough nutrition. Most of her "stuff" is now removed - no more heart monitors, and the only things she's hooked up to now are some oxygen, a nasal-gastric tube for supplemental feedings and a probe on her foot to monitor heart rate and oxygen use. She still has the pacemaker wires sticking out of her tummy, but everything else has been sutured up. Her chest wound is healing well, but pretty gross to look at, since the glue is starting to peel. Ewww.
I can't believe that we're starting to move toward normalcy. Today Sadie has slept most the day, and not eaten much. I've been so paranoid that something is wrong that two different docs have had to come and reassure me it's ok. I just don't know what to do with a happy, sleeping baby. It's wierd after all we've been through.
Since coming off of her ventilator two days ago, Sadie has rapidly gotten better and better. I haven't had a moment to get on here - it's been a whirlwind of firsts, happy moments and long bouts of crying (Sadie, mostly, but some of my tears have been mixed in there as well).
Now that she's off the breathing tube I'm able to change diapers and bathe her, which is an adventure to try to acomplish around the 20 million wires still attached to her. Her arterial lines have both come out (one was in her neck, one in her groin), so now I can pick her up, hold her, rock her, give her a bottle (they won't let me put her to breast yet) and put her in a swing, which she loves. That kid just wants to keep on moving.
Despite all the progress, it's been kind of rough these past few days as she's been completely weaned from the Fentanyl, which is an opiate narcotic. Last night was especially gruelling, with an hour or more of every three devoted to crying, one to eating and then in my free hour I have to pump, get her resettled for a short nap, and try to lay down for a few minutes. I'm going on no sleep for several days except a few cat naps of 15-20 minutes, but loving every minute of her - even the cries. Just a few days ago there were whispers around here of brain and kidney damage. Today she's tracking everything with her eyes, responding to silly faces I make and eating like a champ, considering the trauma she has been through.
They've been giving her morphine and methadone to help with the withdrawals, and it's a bit better, but we still have some vomiting, diarrhea, sneezing, shakes and some extreme irratability. I can't wait for this phase to be over with!
Katie and I were interviewed for a telethon they're doing for the children's hospital, and Katie did an awesome job. Everyone has been coming up to say how well she spoke and how cute she was describing what was wrong with her baby sister and how she wanted to take her home forever. Katie's been so good through all of this. The reality of having a new sister is starting to kick in now that her sister is being held by mommy, though, and I'm seeing the beginning stages of some jealousy, but all in all, she's dealing with it well. She likes to stand next to me as I hold Sadie and rub her hair and tell her everything is ok, and that she loves her. She's such a good big sister!
After a bad day yesterday and rough start to the morning, I'm pleased to report that Sadie's breathing tube is finally OUT! I got to hold her this morning and it was sheer bliss. Unfortunately, it's not a quiet day here, as she's having a lot of withdrawal symptoms from coming off the pain meds. She just got a little shot of morphine to take the edge off, so I had a spare moment to write in here.
She is so beautiful - I can't wait to show her off! It's the first time I've really seen her face, and she looks exactly like Katie as a baby, except a different nose and she's much darker than Katie.
Yay! Wish us luck as we go through the withdrawal process. It is NOT fun to see your little one shaking and crying incessently.
After the good news yesterday, we got bad news in the wee hours - she has an infection. A culture came back positive, and it will be another 24 hours before we know what it is. Right now all we know is that it's bacterial, and the location source is her right femoral artery, where she has a line going in. So, they've switched her off of her old antibiotic and started two new ones that cover a wide spectrum of bacterial infections, hoping that it will cover this one. We just won't know until tomorrow morning what's up.
All this means that she won't get her breathing tube out today, or tomorrow, for that matter. She is pinking up nicely now, but mostly due to her fits - she's throwing tantrums left and right. She's begun to grab at the wires and lines, and will cry for a good 10 minutes at a time. While it's great to see her reactive and responsive, it tears me up to see the crying. Nothing pacifies her except drugs. They try to let her go without them, but she gets herself worked up so much that her blood pressure skyrockets and they have to bring her back down.
So, I'm back to being overly emotional once again. I am beginning to feel like we'll never leave this room. I was so hopeful about getting home next week, but it's not going to happen now. We're all just ready to be home.
Katie's birthday was ok, but I didn't get to do any of the things I had hoped/planned for her. It just seems that we get swallowed into a time warp here in the hospital and we run out of time to do the "important" things. We did make it to a park for a few minutes, and managed to do cake and presents in the hotel room after a very late dinner. She was thrilled with her big gift - a dollhouse that she keeps begging to bring to Sadie's room. It's pretty cool - I have to admit I liked playing with it this morning, too. Don't feel too sorry for poor Katie, though - she has her big party this weekend which will be a lot of fun for her. I know she misses her friends.
That's the news from the PICU for today. More sitting and waiting, thrown in with moments of complete helplessness as I watch Sadie cry. I can not wait to get that little girl in my arms. I hope she doesn't hate being held. Right now if I even touch her it upsets her.
I heard it - the three words I've been waiting to hear since Sadie's birth. Today one of the heads of the cardiology team came in, and he told me that Sadie is recovering remarkably, and that, other than the swelling, she's moving along quickly towards going home. I finally got up the courage to ask what I've been wanting to ask since day one - "What can we expect over the next year?" And his reply? "A NORMAL BABY!" I am so excited!!! There's an end in sight to this nightmare of a roller coaster we've been experiencing the last two weeks.
Keep your fingers crossed for us - we hope that tomorrow will be the day she gets the breathing tube removed. They're still waiting for more fluid to come off, and to reduce her CO2 levels. I'm so close to holding her now that the minutes seem like hours. Today the only real drawback are some slight withdrawals she's facing from reduction of her painkiller, Fentanyl. Her little arms are shaking and her eyes roll back from time to time, so the nurses have to keep assuring me again and again that she's ok. I hate seeing it, but know that the sooner she's off of them, the better she can recover. It's just the in between time that's hard.
On another happy note, four years ago today Katie entered our lives. She is my joy and pride, and I don't know where I'd be today without her. Such a wise person is enveloped in that little body... she amazes me with her beauty, strength and smarts. (No... I'm not a proud mommy at all!). Happy birthday, sweetie!
OK, so now I can vent. Sadie's nurse yesterday was completely incompetent, so it was a really long day. She spent most of her morning watching the Today show, followed by the View. When something really good came on that she wanted to see, she left Sadie and the little boy next door and went somewhere more quiet to watch. I was horrified to see the little guy's stats falling, and couldn't find her anywhere. I got another nurse to cover the first time. The second time it was Sadie's alarms sounding, and again, she was off watching TV. She came in flustered, messed with the heating element alarm, couldn't figure it out and turned it off. Then, because Sadie was congested sounding, she started thumping her chest - DIRECTLY on her newly opened wound (they had to reopen it because it was beginning to look infected). I managed not to beat the crap out of her long enough to get the head nurse, who shoed her out to lunch. The head nurse (who I really like) promised to stay on her the rest of the day.
To make my day even better, the Incompetent Nurse came back, and because she was "forced" to take care of her patients, spent the day with us. The woman was insane. Talking to herself. Rocking. Twisting her hair like mad. More than twice I caught her in total lies about her care for the two kids she was watching. At the end of the shift I told the head nurse that if she ever came near Sadie again, we would have a throw down. I can handle crazy. I can handle incompetence, even. But not with Sadie, and not right now. I felt even worse for the little guy next door, who's much more critical at this point and didn't have parents there watching out for him.
So, that was my fun day. Luckily Jane, one of my favorites, was on last night, and Sadie's stats have been fine. I think it's funny how the competence of the nurse relates directly to how their stats are. Tells you something.
On a brighter note, Sadie's chest drainage tube came out yesterday. The cardiology assistant asked me if I wanted to keep some for her scrapbook. Ewww. But, since asked, I said "sure." I have no clue what to do with it.
Sadie's also off the heater now, and covered in blankies and a hat. Too cute. Her swelling is going down fast now, and it's wierd to see this new baby emerge from underneath all that edema. And the foley was taken out yesterday and she's pooping and peeing up a storm in her diapers. Hooray! You know it's a sad story when a mom is so thrilled at the prospect of changing diapers in a few days. With this baby, I don't think I'll ever begrudge the diapers, late night feedings or other things that tend to wear you down in the early days. It will be a treat just to hold her.
I can not wait to write my real blog today. I soooo need to vent on some things, but just can't do it at the moment. It's been a long day and I'm pretty cranky. I had hoped to work some, since we have some quiet time, but no such luck.
Poor Katie is home with Jason today - she has a urinary tract infection and is feeling awful. I feel so badly that I can't be there to comfort her.
Sadie is doing ok. She got her chest tube out today. She's still having some issues, but many of these relate to said issue above that I can't really write about right now. Basically, it's not HER, it's her care. She opened her eyes for a long time today, and every time I opened my mouth (this game started with a yawn) she'd open hers, too. I was totally thrilled about that. It may come in handy when we start teaching her to nurse.
A minister from my parents church came by this afternoon who has a son that was here with a heart defect, which was nice of him. Gethsemene (my parents church) has been so kind to us, offering support, visits, offers to help and prayers. Thank you all.
I've had a few requests regarding previous posts and general questions, so I'll try to knock them all out here.
So, there you go, your favorite questions answered. Fun stuff.
Sadie is doing GREAT! Last night they took her off the epinephrine, and her blood pressure (which it regulates) has stayed fairly stable. She's started to try to breathe over the ventilator, which is good. Today the'll review the x-rays she had this morning to start talking about removal of the ventilator, which could happen as early as Monday. I can't wait to see what she really looks like!
I stayed in the hospital with her again last night, just because I'm nervous despite everythign going so well. It just all seems too good to be true after all we've been through the last (almost) two weeks. I actually slept - a LOT - maybe 7 total hours. I feel so energized this morning that I don't know what to do with myself. The PICU nurses are all trying to shoo us out for the day - it's going to be a pretty one here. We may just take them up on it. Once Sadie moves to the "floor" (post-PICU) we'll be with her 24-7, then home, so this is our last chance for a long time most likely.
I have lots of new fears cropping up now - but all good ones. Like I'm nervous about the first time I hold her - will she want to be held? Or will she be used to the lack of stimulation? Right now her bp goes crazy if you touch her. She hates it. Will she learn to nurse? How will I handle her at home, on my own? I'm sure it will all come together... it's just that after having her so sick since birth, I'm nervous for the first time about being a "real" mommy to her.
Our families were with us all day yesterday, and I can't thank them enough for their support. It really helped us through it all. You should have seen us all in the waiting room after we found out she was ok. I'm not sure how much Katie understands of it all, but we've told her Sadie is ok now, so I hope she doesn't worry as much. She has been VERY worried and telling lots of people that she wants her sister to get better.
Thanks, again, to everyone for their thoughts and prayers. Keep them up - Sadie is doing very well, but still has a long way to go.
Sadie's surgery is over! It went better than we could ever imagine or even hope for. She looks great, came back on only painkillers, O2 and some anti-coagulates - we had expected more. Not to mention they closed her chest (we had been prepared for it to be open), her stats are doing pretty well (bp is a bit low... but not bad). We just can not believe how good she looks. The chest wound is minimal, and should heal to just a pencil line. She's still a bit blue, but it's to be expected. They're talking about taking out the ventilator in a few days if all continues as it is now.
I can't even begin to say how happy we are. We don't know what to do with ourselves. It's this huge rush of adrenaline and relief. Thank all of you for your thoughts, prayers and positive energy - our little girl is doing great!!!!!!!!!!!!!!!!!! :)
The Mohawk Look. It will be all the rage next year. :)
Caught with her eyes open. It just happened this morning - it was great to catch them - even if they were on their way shut again.
Another of her new 'do.
Last week - with slicked down hair. She was soo puffy then. You can see from the photos above she's looking much better now - more color and less edema.
Sadie has had a busy day. The morning started out with the replacement of her arterial line in her neck. They had put it in yesterday evening, and had not sutured it, so it came out a bit. They had to come in and redo it - this time with 3 sutures to ensure it didn't come out during surgery. I was in here for the procedure, which probably wasn't smart on my part, but I haven't wanted to leave her all day. Right as the dr was finishing up, a nurse came in and said Katie was coughing in preschool and had to leave because it sounded bad (she's in the preschool here at the hospital for now - it's for patients and siblings 3-5). So I freaked out and got over there, just to find out they'd sent for the wrong parents - Katie was fine (thankfully - I was in tears thinking she was getting sick too).
I left Katie to play longer, and got back to Sadie's room to find out that an echocardiogram was next on the schedule. They were searching for her coronaries to make sure that they looked good for surgery tomorrow. The echo guy said he thought they looked good, but when quized further said he couldn't get a good picture of the left one. He left with a promise that I'd know more before end of day. It's officially midnight, and no word on that.
Meanwhile, we've been looking deeper into the situation regarding Sadie's kidneys and whether or not she should get the preventative dialysis tube. The surgeon says no, but several drs here disagree, as well as some nurses. I addressed it to their (the cardiology surgical team's) nurse practitioner who told me they'd made the decision not to do it. I don't feel good about it, and they promised I'd speak to the surgeon today, but haven't seen him. In fact, I've never met him. It makes me even more nervous. I know he's crazy busy, but I'm worried and no one seems to be addressing the fact that we, as parents, have the right to know the reasoning behind it all. The NP said that they talked to some renal specialists, and they concur... but I still want further reassurance.
By this point I had a killer headache/migraine type thing going and took Katie to McD's House for lunch/laundry/nap time. Don't even get me started on McD house - that place is terrible. Once this is over with, they'll be getting a piece of my mind. We want to go to a hotel, but haven't had time to really look into the best place to camp out for the coming weeks. Maybe tomorrow while we await news and have nothing better to occupy our time.
Katie's been a saint during all of this, and loves her little sister so much. She draws these adorable pictures of Sadie - gives her black hair that sticks up all over. :) Tonight I had to call Mom and Dad to get her, though, because I just don't want to leave the hospital.
Tomorrow AM first thing is surgery, and I'm nervous. I eat whenever food is put in front of me, but can't really get into it and would forget if not reminded. My stomache is a mess and I can't seem to focus on anything. I'm teary, but can't get a really good cry in. I'm - in general - a wreck. I can't wait for it to be overwith. At the same time, I dread the thought of what she'll go through tomorrow and in coming days. I wish I could take it away from her.
Sadie was much more alert than I've ever seen her since I've been here tonight. At one point she had to be suctioned again, and I was beside her, watching her cry, which tears me up. Then she reached out and grabbed my hand - hard! I couldn't believe it, and I'm taking it as a sign that things will be ok tomorrow. A short while later she opened her eyes and really looked at me (a who-the-heck-are-you, drugged daze, but whatever, I'll take it). It's those little things that keep me going, and give me faith that she'll be ok through all of this.
Please stop and take a minute (today, now) to think of Sadie and send some prayers/positive energy her way. We expect her to be in surgery from about 7am - 3pm. The first hour will be sedation, second hour will be hook up to the bypass (lung/heart machine) and third will begin the surgery. She will have the transposition reversed, coronaries reattached, ASD (atrium hole) plugged, VSD (ventrical hole) plugged and her ductus tied off, as it has not closed. So much stuff for one little girl, but she's tough and a fighter, and we know she'll be ok.
Today has been long. Katie was here with me all day, which made it tough to be with Sadie as much as I'd like to be, but what can you do? I have two kids, and I can't go long without Katie - we both get too upset. She's been all tears and hugs... I know it's really hard on her. Poor baby. No kid should have to go through either the patient or sibling end of this. It absolutely sucks. Her birthday is next week, and most of it will have to be spent in the hospital, I have the feeling. If any of ya'll have good ideas on neat things we can do throughout the day, please let me know! I want to make it as special as possible. We're going to have her party as planned no matter what - we'll have to get family to come and stay so both Jason and I can be there for it.
Sadie is doing fairly well. She is off the epinephrine now, which is good. Today they did a reversal on the paralytic to see what happened, and she's started twitching and moving a bit. I saw her eyes for the first time. It's a scary way to see them (very drugged looking), but all the same, I saw them and was thrilled. I have such mixed feelings seeing her move - I WANT to see it, but at the same time, I don't. I don't want to think that she could be in pain and that we don't know it. Or that she's sad, hungry, or wanting comfort. There's just no way to know how conscious she really is. They've kept her fentinal (pain killer) really high, but she responds to my voice (via heart rate or bp), so I know she's in there.
They finally got the new arterial line in, which they'd been trying to get for days now. The line through her belly button was removed, and she can now have breastmilk pumped in. So it's good to know she's getting some nourishment now. She also had another transfusion today, which has made her nice and pink.
On a fun note, one of the nurses washed her hair two nights ago and left it sticking up all over for us to see. It looked like a dandelion poof - way too cute. Then the next nurse put it into a mohawk style. Since then I keep messing with it, and it stays in a mohawk. It's too funny looking. :)
The surgeon has recommended, against the other dr's advice, that we don't need to do a preventative dialysis tube, so I have no idea what is up with that. I talked to this evening's nurse about how frustrating this all is - not knowing enough to fight people on what we want; not being able to have a choice in it if we did know. You all know what a complete control freak I am (yeah, I admit it), and I hate not being able to have a hand in what happens with Sadie.
Surgery is still on for Friday morning. They better not bump her again, or I think Jason will be kicking some butts. Seriously. I think he's even more frustrated with the postponement than I was. I'm happy to see that she's come along so far, and has gotten so much more stable (as is he), but I'm sick of waiting, too.
I've met another couple who has a very serious heart-baby case, Jeff and Cathy. Their little girl is named Madison and was born with her left side of the heart not fully developed. Their case was like ours - they didn't know until after she was born, and it took hours to find out. They had surgery 2 days ago, and she came back on ECMO (a heart-lung bypass machine). She's doing pretty well though, and came off it today, but has a long way to go. So keep them in your thoughts and prayers too. They need it as much as we do.
All in all, a good day, I guess... I'm just getting worn down and more emotional with each passing day. Continue to send your positive energy our way - we need all the energy we can get at the moment! Thanks!!
Another long day, but a better one. They removed Sadie from her paralytics two days ago (Vassopressin, I think was the name), but she had not shown any response at all until late last night, when she twitched one of her fingers. Today we've seen a few more twitches, mostly fingers, but some facial twitches and once or twice in her feet. But it's not what they'd hoped for, and it indicates that there has been damage to her kidneys (that, and her sodium is not at the levels it should be). So, now we have to have a preventative dialysis catheter put into place during her surgery to ensure that no more damage is done to her kidneys. The good news is that renal failure does tend to mend itself in these younger patients, and in 1-6 months after surgery her kidneys should be good as new, barring all other "circumstances" that could arise.
It didn't get my spirit down too much today though - seeing her finger twitch was the sign I needed that she's still in there, waiting to be feisty once again. The sad thing about it all is that the kidney problems were most likely caused by the type of pain medication and paralytics used. There's more expensive stuff out there that would not have caused this (most likely), but the hospital powers that be do not use it unless necessary (as it now will be for her). It makes me want to scream. Kind of like them driving her here instead of flying her, which should have been done. But I can't dwell on the should haves, or I'd go crazy. OK, I am going that way a bit anyway.
Yesterday was my emotional day, and I was a wreck. We had to sign the consent forms for her surgery, which no parent should have to do. It sucks. I'd read all of the side affects, possible problems and worst outcomes on the Internet, and already knew the risks. But it's totally different when it's written out in front of you on a document you have to sign to acknowledge that these things could happen to your baby. I've been kind of low the past few days, so I went and got Katie and brought her to be with me. She's been great and loves her baby sister so much. She is so gentle and gets so much of what is happening that it amazes me. Last night she asked if Sadie would die because she was so sick... no (almost) 4-year old should understand that much about what is happening to their baby sister. My heart just breaks to know that she understands how serious this is.
We all just know, though, that our little Sadie is tough - she's already made it this far, and we can't wait for surgery so that we can be on the road to healing. We did get some good news - they may bump her up to Thursday due to a cancellation, so we're hoping for that. Maybe. I don't know - she's #1 on Friday, and I kind of like to think of her going in the op room when the doctors are fresh and sharp in the morning. Either way, it looks like it will happen this week, and while I'm nervous, I can't wait for it. I know it will be a long week afterwards, but I think we're as prepared as we can be for it at this point, and the waiting is just driving us crazy.
Well, they've postponed surgery again until Friday. They took her off of her paralytic yesterday, but she still hasn't moved. I'm sure she will make it through all of this, but it's so hard to wait... I just want results, movement, anything to show me that she's ok. I know in my heart she is, but I want to SEE it, too.
The little boy next door is even sicker than she is, I think. We've heard his monitors going off all night, and today there were a ton of people in there working on him. They took him away, taking our nurse with them, so I know it's serious. It's so sad, because his family is hardly here. Yesterday by the elevators I heard the mom say that there was no point in being here, because she can't do anything. Meanwhile, I see the little guy twitching and responding, which is more than I've seen the entire time we've been here with Sadie... I just don't understand people.
There are so many sad stories here. We've gone to the McDonald house since we're going to be here for so long, and I hate it. We only sleep there when needed - I spend all the time here that I can. Anyway, everyone there wants to "share" their stories, and I'm just not up for it right now. I don't want to hear anymore sadness. I'm surrounded by it all day. I need to hear some happy endings (if you find any, forward them!! I love reading about TGA babies that have normal lives - even if it's the same story again and again.). There is one couple that looks no more than 20 or so that had a baby at 6 months - her liver, kidneys and lungs are all failing. It was everything in my power to sit and listen to their story. The thing that bugs me the most, though, is other moms crying to me about their babies that aren't nearly as sick as Sadie. I know it sounds harsh, but I just don't have the strength for it, and I don't know why everyone has to tell me their story. I don't want to be reminded how really sick Sadie is. I don't want to see hopelessness - I refuse to give in to it. I do understand the need to tell your story again and again... I've gone through that phase a few times here - but only when people ask about her, or why I'm here. Sorry for that random venting session - it's just my pet peave of the moment.
I did get to get out to dinner last night, and got treated to my first margarita (thanks Lauren!). It was the best I've EVER tasted, and I really needed to just laugh and get out for a bit, even if it was only a couple of hours a mile or two down the road. I am so lucky to have such great friends and family that have surrounded us with love and support. I don't know where I'd be with you guys.
The cardiologists' PA is meeting with us at noon today, so we'll learn more about why the surgery is postponed and what to expect in coming days. I've been reading more on the internet, and have added some new links for anyone interested in what the surgery is.
Sadie's made great progress in the last two days - she's off NO (which was a requirement for her to have surgery) and has come down off of the paralytic (I think it was called vasopril... not sure. Started with a V.). She was supposed to start twitching and moving today, but we haven't seen any movement yet. She has 48 hours though, before we begin to worry that something else may be wrong.
It's hit me in the last couple of days how very serious this all is. I just had a dr come by making his rounds and all he did was emphasize how involved and intensive this surgery will be. They are all trying to prepare us for the long days ahead, during and following her surgery. As of now, they expect her to go in for surgery on Wednesday, but there are a few other kids lined up that day, so we'll have to wait and see.
We've had the best nursing staff that anyone could ask for here. They have not only attended to Sadie, but they've helped Jason and I immensely as we work through the emotions, highs and lows we've seen the last few days. We had one nurse, Esther, with us the last three days, and she's been so great with knowing what Sadie needs and when. Sadie had her vitals drop low today, and Esther was at lunch - it took an hour and a half to get them back to a decent level. She's off the rest of the week, as is Karen (our other favorite), so I hope we can find experienced nurses we trust at the same level.
The hardest part of the last day or two has been being without Katie. I feel like we're being torn apart by all of this, but I'm helpless to do anything about it. Our families have been so great about helping out with her - mom & dad had her a few days, she's been with my sister-in-law and her cousin all weekend, my sister will watch her tomorrow... but it's still so stressful for her. Jason and I were talking today about how we think it's probably harder on her than anyone - one day we're all fine, talking about the new baby coming, making plans... the next day mommy and daddy are gone, she's being shuttled around, and the new baby is sick and she can't even really touch her. I miss her so much right now I can't even explain.
The realities of the outside world have started to hit home, too. Like Friday, when I realized we hadn't even begun to contact our insurance company. I have no idea how I'll handle the business over the coming months. I'm so thankful for Becky (my new employee) - she's running with everything so well... but she's only been there three weeks and I'm worried to death the stress will drive her away. What a way to start a new job. Jason's work has been horrible - they won't let him use his sick leave, he doesn't qualify for FMLA since he hasn't been there long enough, and his boss is an absolute jerk (I'm censoring what I'd really like to call him). His boss had the nerve to call him at 8:30 am the morning after we had Katie (she arrived at 10:30 the night before) to ask him where files were and when he'd be back. The guy has no heart - I think he was spawned on another planet.
As you can probably tell by the tone of all this, I'm wearing down. I'm super happy that Sadie is doing so well, but I see the road ahead and I'm, frankly, scared. I can't wait to get the surgery over with. I can't wait to be able to hold her in my arms. Please continue to keep her (and all of us) in your thoughts and prayers... we need it right now!
The last two days have been blissfully quiet here in the NICU. Sadie finally stabilized late Wednesday night, with only one bad episode. Thursday she was quiet almost all day, and last night was great. I actually went to the hotel and slept because she was doing so well. Of course, I was also heavily medicated to GET to sleep, but what the hay... just leaving her is progress on my part. The nurses have all been awesome, and the doctors are so helpful and patient as I ask a trillion questions.
We are now hoping that Sadie will be able to have surgery possibly early next week. I'm stealing myself for that and reading up on what to expect post-op, but can't wait to get over it all. She is doing so well. She's starting to look like my baby again - the fluids are draining and she is getting cuter by the second. I've loved being able to finally touch, talk and sing to her. I finally am feeling like I AM a new mom and not just an outsider watching in horror.
We had a great nurse yesterday, Karen, who let me play "dress up" with Sadie - we draped her in an outfit and took some pictures (I'll post them later). That evening we had another super nurse, Youngli, who washed her hair, brushed it and made her smell pretty. She is lookin' good now! Today's nurse, ironically, is named Esther (Sadie's grandma was Sadie Esther, her grandma's name is Esther too). She's been lots of fun and helped me out a ton with figuring out how to pump in the room so I don't have to leave each time I need to do it (every 2 hours).
Today has been quiet. They've weened her off of the Dopamine, taken her oxygen down to 60% (had been 100%), and her Nitric Oxide is almost weened off. This is all good news as it all means she's a step closer to surgery. Tonight will be a telling night - how well she does without the NO is still in the air. Thus far, she's done great. Keep us in your prayers, though we still have a long road ahead!
It's amazing to me how, when times of trauma, complete strangers can make the biggest impact in your life. We've had just an amazing overflow of love and compassion sent our way - often times from people we've never met or barely know. During all of this, as I'd begin to question why this was happening to us or I'd feel completely alone, something would happen to let me know that I was not. Like Thursday morning - I was trying to get to the hospital and had just missed the shuttle because the times were posted incorrectly. I'd have to wait an hour, because I'm still forbidden to walk much, even though the hospital's only 3 blocks away. I could call a cab, but it would take 30 minutes, so that wasn't much help. A complete stranger in the lobby came up to me and asked if I'd like to ride over with them. It turns out that she was the aunt of a little guy in the PICU a few doors down from Sadie - he was just recovering from surgery for VSD (one of Sadie's defects), and it had been a success. Later that day I was melting down in the hallway and a chaplain came up and lent an ear as I poured out all that had happened those last days. He didn't preach, didn't advise, just stood and listened. It was exactly what I needed at that moment - a detached person to tell my story to.
My parent's minister drove all the way here on Wednesday to check on the family. While we're not church-goers and we were, at the time, not hospitable in the least (sorry Ronnie), he was there if we needed him and he was there for my parents and Jason's family. It means so much to us that he went out of his way he's met us only in passing.
And the nurses and doctors... all strangers, all giving everything they have to get our daughter through this. I don't know how they do it. Cheryl-Ann (SuperNurse from Memorial Regional in Mech'ville) called the NICU just to check on Sadie's progress and let us know they were all rooting for us.
One guy held a door for me and I about lost it. A woman on the elevator smiled at me and for some reason it gave me a boost for hours. It's crazy how the random acts of strangers can make all the difference.
This is our first picture of Sadie, at about 6 hours old. We got to spend about 15 minutes with her. Prior to that we'd seen her for only seconds when she was born. Jason got to see more of her, as they let him go to the nursery. I got to hold her for a brief second, but Jason still, up to today, has never had the chance.
The minute I awoke Wednesday (about 4-5 hours later) I wanted to get back to Sadie, of course. When we walked into the room that morning, it was fabulous. Nothing was beeping, her 02 had hit the 90s, her blood pressure was good. They had added Nitric Oxide to assist with her 02 levels and that had seemed to help a lot. Unfortunately we found out there was a new problem – she had pulmonary hypertension. While it can be a common side affect of TGA, VSD and/or ASD (all congenital heart defects) they don’t think it’s related this time. It could be a problem due to an infection (which was later ruled out) or a problem with the lungs. So they put her on Alprostadil to help the blood vessels relax. While Jason and I were there talking to her, she fluttered and tried to open her eyes, and little tears came out. No words can describe what I felt by that tiny movement – but it was something like hope, joy, heartbreak and the deepest love imaginable rolled into a second.
We headed to the hospital, and our families came to see Sadie for the first time. We are allowed visitors, and took them back to show off our beautiful baby. It’s weird – no matter what is wrong with your child, there’s this huge swelling of pride you have when you show them off for the first time. My little girl is such a fighter – the nurses all comment on how feisty she is (though now, of course, she’s heavily sedated and paralyzed with drugs – but she still tries to fight it). Thatta girl!
And, Katie got to meet her sister at last. It was so hard for me to watch. All pregnancy I'd had visions of what it would be like - Katie holding her tiny baby sister for the first time, being there at the hospital with me, getting to hold her tiny hands. Not in my worst nightmare would I have imagined this day. This being said, Katie did great,though, and it was good for all of us to be together for a few fleeting moments at last.
The hospital here is awesome and has lots of stuff - Katie went exploring with her grandmas and aunt and found a rabbit named Harvey in the children's center down the hall. They have preschool daily here for patients, but siblings are also welcome to go, so we can have her here with us and supervised when needed. The nurses & teachers we met in there were awesome,and I wouldn't think twice about letting her stay. Plus it was a pretty sterile environment - more than any other preschool I'm willing to bed. She also found a play area with mini basketball hoops, area to run, a slide, etc.
Throughout the day Sadie continued to seesaw, though not as much as in previous days. It looked like she was getting a little better in terms of stabalizing her vitals. But it was too much to consider surgery that day, so they removed her from the lineup. It really was hard to hear that we'd have to wait longer. I just wanted her fixed and on her way home with me.
At the end of the day, the family left to go back home. I can't thank them all enough for being there that day - I was rude, tired and mean, but they all were so supportive (sorry guys) and I can never thank them enough. Mom and dad have been helping with Katie almost constantly since Sadie arrived, which I know hasn't been easy. Katie wants to be with mommy and daddy, and believe me, we want her here with us, too. It's just not feasible right now until things stabilize. Carl and Kim (Jas' brother and sister) came down to be with us. And Jason's parents were here, of course, too. Everyone pitched in with Katie at the hospital and helped in his/her own way and it's been such a big help. Plus, the calls and emails from other family and friends kept us all going. Every time I thought I just couldn't handle any more, I'd get a boost from a friend or family member at just the right time. Thanks. :)
The night was better - I had a new nurse to hang out with and it was quiet, with only one big crash in vitals caused by fluid buildup in her lungs. Once suctioned it took a long time for the stats to go back up. Every time this happens the minutes start moving like long, stretched out days until she's back up. Once stable again I went to the hotel for a couple of hours of sleep, but couldn't get there. Jason had taken Katie home for the evening and to get supplies (you know, stuff like clothing, which we didn't really have here) and spend some "normal" time with her. So I was alone here and just couldn't get myself to let down. Even being away for the two hours was too hard for me, so I went back to the hospital in the early hours of Thursday morning.
I was released from the hospital at 10:00 the Tues morning, and we headed home to pack enough to get through a few days in Charlottesville, got Katie settled with my mom, and took off. Once we got to the PICU at UVA Medical Center, we got filled in on what was happening. It was crazy – alarms were going off left and right, half a dozen dr’s and nurses were swarming in and out of the room working on her, and she was hooked up to more drugs and machinery than one can imagine. She was so blue/gray. Before this all happened I was worried about all the pink in her wardrobe (I wasn’t big on pink). Now pink is my absolute favorite color.
Jas and I stayed a while, met some people working with her, and watched her get a little more stable. A social worker came in to set us up with accommodations at a hotel in walking distance, as well as the Ronald McDonald House, where I’ll be for the long-haul most likely. Then, we went to the hotel to crash. I had not slept, and couldn’t sleep then either. I couldn’t stand being away, so made Jason take me back to the hospital, where I stayed most of the afternoon and into the evening. At one point her vitals dropped so low that the entire staff of the PICU seemed to be in our room. I watched in horror/awe as they worked on her – 4 drs and 3 nurses, trying to keep her going. I have never been so scared in all of my life. I don’t know how they do what they do day in and day out – but I’m so thankful that they do it. For hours there were constant alarms, her vitals would seesaw like crazy. Blood pressure would go up, cvp (basically the pressure in the heart) would go down, she started running a temperature, her O2 levels would drop… there was always something going wrong.
Finally they had her stable enough that I knew she’d make it through the rest of the night (or at least felt she would). Jas forced me to leave for some sleep since I hadn’t slept since Sunday and it was then Tuesday night. I wasn’t in pain still but downed a blend of sleeping pills and percocet to numb and knock myself out for a bit. I'm glad that day is behind us, and look forward to a brighter tomorrow.
After a couple of hours of Sadie’s arrival, the nursery dr came in and told us there was a problem, that it appeared to be her lungs, and hopefully with a little intervention and medication she could be better stabilized. Two more hours passed, and he came and told us that she would have to be transferred to St Mary's NICU, which had more advanced equipment and medication. My now favorite nurse in the world Cheryl-Ann got me ready to be able to be transferred with Sadie. I got in the wheelchair to go. We were given a birth certificate that we had to use, and we settled on Madeline Sadie as her name and decided to call her Sadie, after her great-grandmother who was a very strong and long-lived person (another story for another blog). Mom and Dad left to put Katie back to bed, since it was clear she wouldn't get to meet her sister that night.
Another hour or two later the doctor came back in and told us that things had changed. A cardiologist had arrived and found a heart defect called Transposition of the Greater Arteries (TGA). He left us with a drawing on a napkin and my world began to spin in a different direction. However, I still thought she'd be ok - he said 98% of the kids who had it were fine after surgery. He told us that Jason could go back to see her briefly. I was crushed that I wouldn’t see her, but kept my mouth shut (must have been the shock – you know me. I never keep my mouth shut.) But, Cheryl-Ann Worlds-Greatest-Nurse brought in a wheelchair and got me set to go in right behind Jason. She didn’t ask the dr, she just did it. I love that woman.
Seeing her in NICU started to bring me around towards our new reality. This post has her picture of the first time I REALLY saw her. I don’t have a picture of her when she came out, or for the brief second I held her, so I have nothing but a flash of a memory to remember what her face looked like without a ventilation tube and swelling. Despite the tubes, she was pretty pink and looked ok. She was a fat little thing – I couldn’t get over the fat legs and all her beautiful, dark hair. It was in there that I learned her vitals - 7 lbs, 10 ozs, 19.75 inches long. I think they said she was born at 10:35, but we have differing times written in different places, so I’m not completely sure. She had tons and tons of dark hair. Her face was very squished looking, which I learned later was due to edema (swelling because of the toxins and fluids that weren't being evacuated properly). But she was awake, and she grabbed my finger and held tight. I was barely able to breathe while she held it the entire time I was there. She has the longest, most beautiful fingers I've ever seen, with gorgeous nails. Within a few minutes we were asked to leave, and had to go back to waiting in our room. We had been told she’d have to go to St Mary’s, and Cheryl-Ann Super-Nurse pulled strings so that I could go at the same time she did. I got into the wheelchair again and was all packed and ready to go
Another hour or two later I was packed and ready to go, sitting in the wheelchair, when the doctor came back in, accompanied with two cardiologists from the transport team. More bad news. Dr. Albrecht (one of the transport cardiologists) explained in more detail what TGA was (see link on right-hand side for a brief overview if you want it), and that we would need to transport Sadie to Charlottesville (UVA medical) for immediate assistance. Being a Hokie, I naturally questioned whether or not this was the right place for Sadie, but they assured me that it was the best place in our area for the type of assistance she needed.
On the way out, the transport team brought in the travel incubator for one last goodbye before Sadie got on the road. That’s when reality hit me. She was so tiny in there, covered in tubes, machines whirring, and they were on the run out the door with her. I was stuck in the hospital until I could be discharged, feeling totally fine (physically) and watched them take my baby far away. No mom should ever have to go through it – it sucks.
I didn’t get a call for many hours that she had arrived at last. On the way, her vitals had all dropped, and by the time she arrived she was in really bad shape. Her 02 levels were down to the 30s (should be 90-100) and her blood pressure had almost bottomed out. I found out later that they immediately worked on stabilization techniques, which including an emergency atrial septostomy. Basically, they went through the artery in her groin up to her heart, inserting a balloon to open up the hole between her left and right ventricals, hoping to encourage the mixing of blood, thus increasing her O2 levels. We had no idea how close we were to losing her right then and there. Thankfully she is still with us!! She's a fighter. All the nurses and docs can't believe how fiesty she is - "fiesty" is the description we get over and over, even from new rns/drs as they work with her the first time. Thatta girl!
Madeline Sadie arrived into a flurry of activity. Inside of me, she was a super active baby - constantly on the move. On the morning of Sept 4 (Labor Day) my contractions began. I didn't think I was really in labor at first - they were sporatic, and she was kicking like heck each time they happened. I'd always heard that babies get quiet. Not this one!
Around 9:00 I woke up Jason - they were about 6 minutes apart. He got up and got ready, and the contractions got wierd - some hurt, some were like Braxton Hicks, none were at any sort of pattern. At 10:00 or so I called the Dr to see what was up. My OB wasn't on call - the one who was said I most likely was in labor, taht I could go in and get checked, or I could wait at home a while hoping they get regular. I chose to stay home where I was comfortable and asked mom and dad to come get Katie so that we could be ready to go when needed. I had planned that the minutre they became regular we would leave - I was GBS (strep B) positive, so needed to be at the hospital in plenty of time to receive antibiotics so that it wouldn't affect the baby.
At 4:00, Jas and I decided enough was enough - the contractions were anywhere from 3-20 minutes apart, but strengthening beyond the "oh ouch" stage. So we went in. I had a great contraction in the parking lot as we walked in. We got in, they checked me, and I hadn't progressed - I was still 1 cm, barely effaced. They watched me for 3 hours, and I only had 3 contractions. Of the 3, only one was a little bit painful. At the end of 3 hours (around 8 pm), they sent me home - I was still 1 cm.
We got in the car and headed to Moe's, figuring Mexican food is what brought Katie around, so it was worth a shot. At about 8:30 pm we got to Moe's and as I got out of the truck, a huge contraction hit. I was PO'd to say the least, but we went in and got food while another hit. We got home and I tried to make it through half a burrito as the contractions became regular. They got down to 5 minutes apart, and I decided to go to bed. They hurt, and I was gettting cranky. I needed some sleep. I managed to get upstairs, adn they started coming 4 minutes apart consistently. And they hurt like all hell. I got even crankier. I didn't know what to do. I hadn't progressed as of 2 hours before. I thought we had lots of time. I started trying to get ready to call the dr and go back to the hospital as the pain increased and the down time between contractions decreased to a minute or so. It all started happening so fast that I just finally told Jas to load the car and help me get out - it was too much for me.
Along the way I told him to speed. Of course there was traffic. Thank the gods we only live 5 minutes from the hospital. We got there and had to go in through the ER - it was about 10:10. Jason left the truck in front of the ER entrance, grabbed a wheelchair and we sped through the halls looking for Labor and Delivery. Of course the hospital was vacant and there was no one to ask which way to go from where we were. The ER receptionist was oh so helpful (she asked me if I was in labor during one of my contractions - I said yes (an idiot born every minute), and she said again (because apparantly she couldn't hear) and I yelled, yes - please help me!! and she got an attitude and said "go to the third floor", not explaining where. She is on my do-not-like list.)
We made it into Labor and Delivery and they buzzed us on back to a delivery room at 10:17. The same nurse who had released me earlier (Cheryl-Ann) helped me into bed as I screamed that I wanted drugs immediately. She calmly told me she had to check me first - she did immediately adn I was 9 cm! The room became a flurry of activity - people running in and out, my legs going up in the air, the contractions hitting and the urge to push overwhelming. I had to wait through a couple and try not to push - then the Dr on call told me I could go ahead. I pushed but got swallowed in the pain, I pushed again and her head came out... again, and her shoulders followed by the rest of her. She cried softly immediately and I was so relieved - Katie had had her cord so tightly around her neck that she was a 3 on the Apgar scale, so I was so happy. The baby would be fine. But then they took her immediately away.
I watched as they started suctioning. I asked if she was ok, and all the nurses hovering said yes. But she wasn't pinking up. Even I could see it. She cried a bit, though, so I thought it was ok. They kept suctioning. Finally, they brought her to me for 30-60 seconds and placed her on me. She was so beautiful. She was completely swaddled, and all I can remember is her little mouth was like Katie's, eyebrows like her daddy's, a round face like me and tons of dark hair. Then she was gone.
They told me they were taking her to the NICU to get her on oxygen and pink her up. I accepted this without another thought, except that I hadn't had time to get the antibiotics I needed, and I was scared she was at risk for a GBS-related illness (pneumonia most likely).
When they took our newest member of the family from my arms, the room cleared immediately. It was weird to be alone in a room after the tornado of activity. There’s nothing stranger than being pregnant one minute, surrounded by people and having the baby and everyone gone the next. I remember laying there in shock, my mind completely numb, trying to process what was happening.
Two hours passed with no word. My parents arrived with Katie and Jason's parents arrived. We laughed and talked. I got a couple of percocets and a motrin and began to feel human again. Katie was such a good girl, hugging and loving on me, telling me everything was ok and she couldn't wait to meet her sister. We talked about the name a bit - Jas and I still weren't sure. And we waited.
Since Sadie has entered our world, things have turned completely upside down. I've decided to keep this blog for a few reasons - so that family and friends who want to hear the nitty gritty can keep up with the saga, since I'm horrible about staying in touch right now due to obvious reasons, to keep track of what's happening day-to-day with Sadie's health since it's all a blur at the moment and to try to stay sane. Writing things out usually helps me to cope.
So, here goes for a novice blogger. I've managed to avoid this technology for long enough, I guess. Time to embrace it. Feel free to comment and add your two cents/ask questions/whatever - just keep it "nice" since all kinds of people will be reading along.