So, after I have had a couple glasses of wine, the fam is in bed, I finally get up the nerve to look up Jamie's VSD surgery on youtube (or at least what it may be like). And I am having a really hard time watching it, but I make myself watch, because my little girl is going to have to live it, and what's living it compare to watching? Not sure, but it's not fun.
Dr. Aguirre said that he would be presenting Jamie's case to the surgical board at JDCH on Thursday. They will make the ultimate decision on whether we will have surgery by the end of April, or wait until sometime in May. I wish we could just get it over with, but at the same time, letting the girl get bigger is a bonus. She has what is called an aortal pulmonary collateral, which in english translates to an extra vein that developed and allows her to have extra flow to her lungs, allowing her to have excellent O2 saturation.
I don't want my kid cut open again. Hell, I don't want her in the hospital again. Seems like we just got her out, and we are talking about putting her in again. On a related note, we do tummy time every day, but because she's had a 6 week delay, she hates it, and isn't taking to it too well. Hoping that we can get her acclimated before she goes back in and gets delayed even further.
I want badly to keep Jamie out. Can you imagine having to turn your child over to others who say that they can do the best for your child, and leave you feeling helpless? It's a pretty nasty feeling. I know people say it, but truly, I wouldn't wish this on my enemy.
Friday, April 6, 2012
Sunday, April 1, 2012
Welcome to Holland, Amsterdam International
On FB today, I came across a poem that is apparently given to parents with special needs kids. I read it, then did a little cruising around the internet about it. And found the perfect counter-point to it. They are as follows:
Welcome to Holland
When you’re going to have a baby, it’s like planning a fabulous vacation trip to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum, the Sistine Chapel, Gondolas. You may learn some handy phrases in Italian. It’s all very exciting. After several months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland!” “Holland?” you say. “What do you mean, Holland? I signed up for Italy. I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.” But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay. The important thing is that they haven’t taken you to a horrible, disgusting, filthy place full of pestilence, famine, and disease. It’s just a different place. So, you must go out and buy new guidebooks. And you must learn a whole new language. And you will meet a whole new group of people you would never have met. It’s just a different place. It’s slower paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around. You begin to notice that Holland has windmills. Holland has tulips. And Holland even has Rembrandts. But everyone you know is busy coming and going from Italy, and they’re all bragging about what a wonderful time they had there. And for the rest of your life you will say, “Yes, that’s where I was supposed to go. That’s what I had planned.” And the pain of that experience will never, ever, ever, go away. The loss of that dream is a very significant loss. But if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things about Holland.
Here's the counter-point, written by Dana Nieder:
Amsterdam International
Parents of “normal” kids who are friends with parents of kids with special needs often say things like “Wow! How do you do it? I wouldn’t be able to handle everything---you guys are amazing!” (Well, thank you very much.) But there’s no special manual, no magical positive attitude serum, no guide to embodying strength and serenity . . . people just do what they have to do. You rise to the occasion, and embrace your sense of humor (or grow a new one). You come to love your life, and it’s hard to imagine it a different way (although when you try, it may sting a little). But things weren’t always like this . . . at first, you ricocheted around the stages of grief, and it was hard to see the sun through the clouds. And forget the damn tulips or windmills. In the beginning you’re stuck in Amsterdam International Airport. And no one ever talks about how much it sucks.
You briskly walk off of the plane into the airport thinking “There-must-be-a-way-to-fix-this-please-please-don’t-make-me-have-to-stay-here-THIS-ISN’T-WHAT-I-WANTED-please-just-take-it-back”. The airport is covered with signs in Dutch that don’t help, and several well-meaning airport professionals try to calm you into realizing that you are here (oh, and since they’re shutting down the airport today, you can never leave. Never never. This is your new reality.). Their tone and smiles are reassuring, and for a moment you feel a little bit more calm . . . but the pit in your stomach doesn’t leave and a new wave of panic isn’t far off.
(Although you don’t know it yet, this will become a pattern. You will often come to a place of almost acceptance, only to quickly re-become devastated or infuriated about this goddamned unfair deviation to Holland. At first this will happen several times a day, but it will taper to several times a week, and then only occasionally.)
A flash of realization---your family and friends are waiting. Some in Italy, some back home . . . all wanting to hear about your arrival in Rome. Now what is there to say? And how do you say it? You settle on leaving an outgoing voicemail that says “We’ve arrived, the flight was fine, more news to come” because really, what else can you say? You’re not even sure what to tell yourself about Holland, let alone your loved ones.
(Although you don’t know it yet, this will become a pattern. How can you talk to people about Holland? If they sweetly offer reassurances, it’s hard to find comfort in them . . . they’ve never been to Holland, after all.
And their attempts at sympathy? While genuine, you don’t need their pity . . . their pity says “Wow, things must really suck for you” . . . and when you’re just trying to hold yourself together, that doesn’t help. When you hear someone else say that things are bad, it’s hard to maintain your denial, to keep up your everything-is-just-fine-thank-you-very-much outer shell. Pity hits too close to home, and you can’t admit to yourself how terrible it feels to be stuck in Holland, because then you will undoubtedly collapse into a pile of raw, wailing agony. So you have to deflect and hold yourself together . . . deflect and hold yourself together.)
You sneak sideways glances at your travel companion, who also was ready for Italy. You have no idea how (s)he’s handling this massive change in plans, and can’t bring yourself to ask. You think “Please, please don’t leave me here. Stay with me. We can find the right things to say to each other, I think. Maybe we can have a good life here.” But the terror of a mutual breakdown, of admitting that you’re deep in a pit of raw misery, of saying it out loud and thereby making it reality, is too strong. So you say nothing.
(Although you don’t know it yet, this may become a pattern. It will get easier with practice, but it will always be difficult to talk with your partner about your residency in Holland. Your emotions won’t often line up---you’ll be accepting things and trying to build a home just as he starts clamoring for appointments with more diplomats who may be able to “fix” it all. And then you’ll switch, you moving into anger and him into acceptance. You will be afraid of sharing your depression, because it might be contagious---how can you share all of the things you hate about Holland without worrying that you’re just showing your partner all of the reasons that he should sink into depression, too?)
And what you keep thinking but can’t bring yourself to say aloud is that you would give anything to go back in time a few months. You wish you never bought the tickets. It seems that no traveler is ever supposed to say “I wish I never even got on the plane. I just want to be back at home.” But it’s true, and it makes you feel terrible about yourself, which is just fantastic . . . a giant dose of guilt is just what a terrified lonely lost tourist needs.
Although you don’t know it yet, this is the part that will fade. After you’re ready, and get out of the airport, you will get to know Holland and you won’t regret the fact that you have traveled. Oh, you will long for Italy from time to time, and want to rage against the unfairness from time to time, but you will get past the little voice that once said “Take this back from me. I don’t want this trip at all.”
Each traveler has to find their own way out of the airport. Some people navigate through the corridors in a pretty direct path (the corridors can lead right in a row: Denial to Anger to Bargaining to Depression to Acceptance). More commonly, you shuffle and wind around . . . leaving the Depression hallway to find yourself somehow back in Anger again. You may be here for months.
But you will leave the airport. You will.
And as you learn more about Holland, and see how much it has to offer, you will grow to love it.
And it will change who you are, for the better.
I think that "Amsterdam International" fully explains how we felt about Jamie, almost from the get-go. Not bad, just different. And we wouldn't change anything about her, ever.
Welcome to Holland
When you’re going to have a baby, it’s like planning a fabulous vacation trip to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum, the Sistine Chapel, Gondolas. You may learn some handy phrases in Italian. It’s all very exciting. After several months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland!” “Holland?” you say. “What do you mean, Holland? I signed up for Italy. I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.” But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay. The important thing is that they haven’t taken you to a horrible, disgusting, filthy place full of pestilence, famine, and disease. It’s just a different place. So, you must go out and buy new guidebooks. And you must learn a whole new language. And you will meet a whole new group of people you would never have met. It’s just a different place. It’s slower paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around. You begin to notice that Holland has windmills. Holland has tulips. And Holland even has Rembrandts. But everyone you know is busy coming and going from Italy, and they’re all bragging about what a wonderful time they had there. And for the rest of your life you will say, “Yes, that’s where I was supposed to go. That’s what I had planned.” And the pain of that experience will never, ever, ever, go away. The loss of that dream is a very significant loss. But if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things about Holland.
Here's the counter-point, written by Dana Nieder:
Amsterdam International
Parents of “normal” kids who are friends with parents of kids with special needs often say things like “Wow! How do you do it? I wouldn’t be able to handle everything---you guys are amazing!” (Well, thank you very much.) But there’s no special manual, no magical positive attitude serum, no guide to embodying strength and serenity . . . people just do what they have to do. You rise to the occasion, and embrace your sense of humor (or grow a new one). You come to love your life, and it’s hard to imagine it a different way (although when you try, it may sting a little). But things weren’t always like this . . . at first, you ricocheted around the stages of grief, and it was hard to see the sun through the clouds. And forget the damn tulips or windmills. In the beginning you’re stuck in Amsterdam International Airport. And no one ever talks about how much it sucks.
You briskly walk off of the plane into the airport thinking “There-must-be-a-way-to-fix-this-please-please-don’t-make-me-have-to-stay-here-THIS-ISN’T-WHAT-I-WANTED-please-just-take-it-back”. The airport is covered with signs in Dutch that don’t help, and several well-meaning airport professionals try to calm you into realizing that you are here (oh, and since they’re shutting down the airport today, you can never leave. Never never. This is your new reality.). Their tone and smiles are reassuring, and for a moment you feel a little bit more calm . . . but the pit in your stomach doesn’t leave and a new wave of panic isn’t far off.
(Although you don’t know it yet, this will become a pattern. You will often come to a place of almost acceptance, only to quickly re-become devastated or infuriated about this goddamned unfair deviation to Holland. At first this will happen several times a day, but it will taper to several times a week, and then only occasionally.)
A flash of realization---your family and friends are waiting. Some in Italy, some back home . . . all wanting to hear about your arrival in Rome. Now what is there to say? And how do you say it? You settle on leaving an outgoing voicemail that says “We’ve arrived, the flight was fine, more news to come” because really, what else can you say? You’re not even sure what to tell yourself about Holland, let alone your loved ones.
(Although you don’t know it yet, this will become a pattern. How can you talk to people about Holland? If they sweetly offer reassurances, it’s hard to find comfort in them . . . they’ve never been to Holland, after all.
And their attempts at sympathy? While genuine, you don’t need their pity . . . their pity says “Wow, things must really suck for you” . . . and when you’re just trying to hold yourself together, that doesn’t help. When you hear someone else say that things are bad, it’s hard to maintain your denial, to keep up your everything-is-just-fine-thank-you-very-much outer shell. Pity hits too close to home, and you can’t admit to yourself how terrible it feels to be stuck in Holland, because then you will undoubtedly collapse into a pile of raw, wailing agony. So you have to deflect and hold yourself together . . . deflect and hold yourself together.)
You sneak sideways glances at your travel companion, who also was ready for Italy. You have no idea how (s)he’s handling this massive change in plans, and can’t bring yourself to ask. You think “Please, please don’t leave me here. Stay with me. We can find the right things to say to each other, I think. Maybe we can have a good life here.” But the terror of a mutual breakdown, of admitting that you’re deep in a pit of raw misery, of saying it out loud and thereby making it reality, is too strong. So you say nothing.
(Although you don’t know it yet, this may become a pattern. It will get easier with practice, but it will always be difficult to talk with your partner about your residency in Holland. Your emotions won’t often line up---you’ll be accepting things and trying to build a home just as he starts clamoring for appointments with more diplomats who may be able to “fix” it all. And then you’ll switch, you moving into anger and him into acceptance. You will be afraid of sharing your depression, because it might be contagious---how can you share all of the things you hate about Holland without worrying that you’re just showing your partner all of the reasons that he should sink into depression, too?)
And what you keep thinking but can’t bring yourself to say aloud is that you would give anything to go back in time a few months. You wish you never bought the tickets. It seems that no traveler is ever supposed to say “I wish I never even got on the plane. I just want to be back at home.” But it’s true, and it makes you feel terrible about yourself, which is just fantastic . . . a giant dose of guilt is just what a terrified lonely lost tourist needs.
Although you don’t know it yet, this is the part that will fade. After you’re ready, and get out of the airport, you will get to know Holland and you won’t regret the fact that you have traveled. Oh, you will long for Italy from time to time, and want to rage against the unfairness from time to time, but you will get past the little voice that once said “Take this back from me. I don’t want this trip at all.”
Each traveler has to find their own way out of the airport. Some people navigate through the corridors in a pretty direct path (the corridors can lead right in a row: Denial to Anger to Bargaining to Depression to Acceptance). More commonly, you shuffle and wind around . . . leaving the Depression hallway to find yourself somehow back in Anger again. You may be here for months.
But you will leave the airport. You will.
And as you learn more about Holland, and see how much it has to offer, you will grow to love it.
And it will change who you are, for the better.
I think that "Amsterdam International" fully explains how we felt about Jamie, almost from the get-go. Not bad, just different. And we wouldn't change anything about her, ever.
Tuesday, March 20, 2012
It's Been a While
Well, I haven't done this in a little over three months, and since I have to sit here and pump, might as well get caught up.
Jamie was born on December 13, 2011, just a little over three months ago. She had a NICU stay at JDCH for 3 days shy of six weeks. Her omphalocele has been closed, but the omphalocele itself is about the size of an orange on her abomen. She still has Tetralogy of Fallot, and an appointment with Dr. Aguirre next Monday on the 26th, most likely to schedule her heart surgery to fix her VSD, which is pretty big. It has already been delayed once, since at her last visit on March 1st, they found that she has an aortopulmonary collateral vein, which is helping supply her lungs with enough oxygen. Her saturation at her last appointment was still at 98-100%, so surgery was delayed for another month to let her grow. A few days after her appointment, we started noticing she was getting blue around the lips, nothing in her fingers or toes yet, and no "tet spell", but we are pretty confident that the time has come to set a date. Thinking it will be in April sometime, not sure when. We have to take her in to meet with the surgeon (Dr. Scholl).
We were using Facebook to update family and friends, as well as posting pictures of Jamie's progress. The listing of the posts are below:
December 12, 2011
Excited to meet baby Jamie tomorrow morning! C-section at 9:30am. Nervous / scared / uncertain about her future. We leave her in the capable hands of God and her Drs and surgeons at Joe DiMaggio. More details as we find them out.
December 13, 2011
Jamie is doing well. She is off of the oxygen. Dr Long painted Silvadine on her Omphalocele to keep infection away and keep the sac that is holding most of her liver and intestines safe until the Drs figure out the plan of attack. Her Omphaolocele is rather large at 9cm in diameter. She is getting a central line put in right now, but they couldn't find a vein to work so they will try again tomorrow. Her heart condition is doing better than I expected since she doesn't need O2 nor did she need the medicine to help her pulmonary tract receive enough blood. She did pee and poo a little so they said they was good for her renal condition but they will have the renal ultrasound read in the morning to confirm. They are also going to do some more genetic testing in the morning including an ultrasound of her brain. That is all I can think of for her update. Tara is doing well and visited Jamie this evening in a wheelchair. She is on ice chips and clear liquids for another day. Thanks again for everyone's support, Jamie, Tara, Christie and I really appreciate it. Tara is in room 248 and Jamie is in NICU A, both in Memorial Regional/Joe DiMaggio Children's Hospital.
December 14th, 2011 10:29 am
We just received a call from the NICU nurse stating that the Pediatric surgeon will perform surgery on Jamie this morning. We have to sign the consent forms shortly. I will post as the info comes in.
December 14th, 2011 10:35 am
Just found out that Jamie will be going into surgery sometime this morning for her omphalocele. We will be heading over to the NICU shortly to talk to the pediatric surgeon and to sign consent forms. Please continue to pray for our little girl.
December 14th, 2011 4:38 pm
Jamie is out of surgery. Dr Long said she did well and that her whole liver was outside her body. She put as much back in her abdomen as possible today without compacting the others organs. The next two days will be very critical due to the threat of swelling that could damage blood flow to any of the organs. She looks good but is on a respirator for the next week or so and is paralyzed artificially so she won't damage the repair. She might need a blood transfusion since her blood count is expected to lower. We will get to see her again after 6 or so.
December 15, 2011 10:37 pm
Baby Jamie today after her partial closure of her giant omphalocele. She is on a jet respirator that makes her breath 420 times per minute. One lobe of her lung is collapsed after last night and they are trying to have it inflated tomorrow. She is making urine very good today after they put a cath in. Her "O" is looking good today as can be told by its color and size. Her left middle toe is badly bruised and looks way different from the others but they are trying to find other places to put her IV and to get her blood gasses from. She is on 4% O2 over regular air tonight. They are allowing her to stay off of the meds that keep her paralyzed for now. If she start moving around and messing with her wound then they will have to put her back on. The giant heart in the picture is where her open wound from the surgery is so that we wouldn't make anyone uncomfortable. They put a arterial line in today to get a better blood pressure on her since the cuff was reading significantly different depending on the location they put it. She is starting to get puffy which was expected and is gaining water weight to bring her to 3.3 kilos (close to 7 lbs). She has so many things attached and reading and it looks overwhelming but she is doing well despite all of the smaller setbacks she had this morning. It has been an absolutely emotional day and a half but things are still looking upward. Hang in there Jamie, I know you can do it, you are a strong little girl.
Tara was discharged today with the Dr saying she was doing great and that her incision was healing faster than expected. 2.5 days for a c-section, so Tara is one strong cookie. She is pumping every three hours to bank enough for Jamie when she is ready for feeds.
Our social worker contacted us today and we received great news from her, they approved a room in the Connie Clubhouse that is basically a hotel room that we can stay in free of charge for a week at a time. This will allow our family and friends a place to meet before or after visiting and for Tara, Christie and I to have respite from all of the crazy ness of the hospital. She also cannot drive until told she can so the clubhouse will be soo great to get to see our child at any time we want. We have some other good news from her but I will wait til it is definate.
For our family and friends that would like to visit, there are no visitors between 6:30-7:30 am or pm. Other than that just make a call to mom or dad to make sure we will be around to let you in since only moms and dads can bring in visitors. Also you must fill out a signs and symptoms checklist that makes sure you aren't contagious.
Thanks for all your thoughts and prayers! She still needs them. I cannot believe the support and prayers I have seen for our little angel coming in from all over.
I (we) have to say Joe DiMaggio Children's hospital has been awesome. They are so kind and compasssionate everywhere we turn. They are willing to do just about anything for us anywhere we turn. I am thoroughly impressed with not only Jamie's care but our entire family's care.
December 16th, 2011 9:40pm
Jamie had a good day overall. Her right lung reinflated and is starting to slowly ween off of the jet respirator so that she can be on the standard respirator. Her surgeon Dr Long came to talk to us and noted that her incision looks good and that she may end up with a somewhat normal looking belly button after this is all over (it's a small thing but makes the future brighter). Her infection in her stomach sounds like it is starting to go away but the cultures will be back tomorrow to confirm. They have started weening her from her blood pressure medication, she was at a dose of 10 this morning and is now on 5 and they can take her off of it at 3. She has a defined reddish hue on her belly where everything was tugged and moved around during surgery. Above and below that she has the slight jauntice color but does not need the UV light at this time.
Tara is doing great and has been out pumping away. All the nurses are surprised how well she is doing. It is so important that she can pump b-milk for Jamie since her insides will have so many issues. They really make it easy here at Joe D for her to pump. They provide all the bottles, supplies, pump, etc.
Christie is staying with us at the Conine Clubhouse and it was nice to have some family time. We look forward to more of that tomorrow. Tara and I came to the lobby to have a date night consisting of sharing a piece of chocolate cake and writing this update.
December 17th, 2011 9:51pm
Another positive day. She is off the jet respirator and back on the standard one with room air, no additional O2. She is moving all around and very active. They had to restrain her since they wanted her hands off her open wound. This stinks to see since she wants to just go. The Drs are positive on their outlook. Her catheter was taken out and she made two small poops! Yay! That means her intestines have begun to work again. Her blood gasses were off this evening after the respirator swap, so I wouldn't be surprised if the jet was placed back on tonight even though they want to ween her completely
December 19th, 2011 9:32pm
Jamie's looking good without that respirator! She is on the CPap machine for just a little help for her lungs. Her incision looks good and Dr Long gave a good report today as she admired her work. Tara got to change a dirty diaper today, which is an awesome accomplishment, because that means everything has been kickstarted down there. She has been alternating between resting and wide awake and looking all around. They took her Arterial line out today so its back to the cuff for reading blood pressure. The nurses had to put her PICC line reinserted since the tape started loosening and the line started pulling out. The NEERS sensors, that measured blood flow across the head and kidneys, have been removed. Overall, Jamie had another wonderful day at Joe D. I can't say enough good things about this hospital.
Tara figured out what every three hours means. I love you babe!
Christie and g-ma came to visit today and brought pizza. I sat at work for a full day and it felt like an eternity but I received good news from Tara all day.
12-20-11 8:35pm
Jamie has a tattoo as you can see in the picture. See is basically status quo for the day. She is resting comfortably most of the day. Dr long's PA came in and said she looked good and that her bowels are still not ready for milk, so more IV lipids and TPN. We heard her cry for the first time that I can remember except for right after birth. I got the chance to change her diaper early this morning. It's the little things that make me happy. She had a good day though and she has made steady progress every day so far.
Tara ended up with a stomach bug and has stayed away from Jamie since this morning. Hopefully she will feel better in the morning.
We will be staying in the clubhouse for Christmas since they were able to keep us for one more week here. They have made us feel so good here and we have made it our home away from home.
1-1-12 8:36pm
Jamie's PICC line is out, all she has left is the feed tube! Also gave b-feeding a try and she did great. Taking that part slow which is hard but we will do what is best.
1-5-12 8:34pm
Jamie moved today to the D-room (discharge room). Dr Long said she is doing amazingly wonderful and that as soon as she can gain weight consistently then she might go home. She still has sensors and an NG tube in her nose for feeding. Tara has been starting to B-Feed and is up to about four times a day. In between those feeds they are giving her b-milk through the tube for one hour then a two hour break. She hadn't known what being hungry was until they took her off the continuous feeds.
Her belly is looking great! The wound is the shape of an "L" about 2.5" x 2.5" but is healing great. All her internal functions have been working like they should.
As a side note, all the scrubbing in to see her has done a number on our forearms to our hands. Christie has it the worst and anything I put on it hurts her more.
There was a baby boy named Bernard two spots down from Jamie that had been having the worst time the past week or so. Baby Bernard earned his angel wings today after a hard first couple of weeks of life. This event just makes me think how thankful we are to have two wonderful daughters that are so well loved. I would have never expected to see Jamie doing so well at 24 days old.
Thank you to all of those that have helped us out while dealing with Jamie! Mom and Dad for driving Christie around town and to and from school, Randy and Charles for mowing the lawn, Barbara and Martin for all the clothes for Jamie, all the guys at work who have helped us in so many ways, and all our family and friends who have kept us sane by visiting, praying, words of encouragement, etc.
1-7-12 9:56pm
Jamie's new private room with a view in the NICU. She moved here this evening. It creeps us out a little knowing she will be alone but the nurses get all of the vitals/alarms sent to their portable phones. She can still be discharged from here but we still don't know how long she will be here. She has been status quo for the last couple of days, but hasn't gained much weight (17 grams today).
1-13-12 6:41am
Our baby burrito Jamie on her one month birthday. She is doing well in the new NICU room. She still must be more consistent in her feeding and weight gain. She is on a 1-1 feeding schedule (b-feed/tube feed) after briefly trying 2-1 for one day this week. They are proactively treating her for conjunctivitis. Besides that she is status quo for the week.
Our time at the Conine Clubhouse has expired so we (Tara, Christie, and myself) have to move home this morning. At least we can sleep on the couch in Jamie's new room.
I still can't believe our baby is a month old already. It has been an exhausting month for us but knowing we have a bright future with her makes it all worth it.
1-17-12 9:59pm
Jamie & Christie hanging out.
Little J is getting big at 8 lbs. She had an EKG yesterday that she cried through for an hour and a half. The cardiologist called and said that the narrowing of her pulmonary valve was normal and expected. He would still like her to have her heart repair in about two months.
Jamie's feeds have been up and down but when Tara feeds her she seems to do better. We hope for her to get off the tube so she can come home.
1-20-12 7:08am
JAMIE IS COMING HOME TOMORROW MORNING!!
1-27-12 7:11am
Jamie made it home last Saturday from the NICU! More pictures to come...
That brings it up to date, for the most part. Will elaborate more later, since this post is waaaay long enough! I think the next thing I'll cover is our insurance, SSI and Medicaid issues.
Jamie was born on December 13, 2011, just a little over three months ago. She had a NICU stay at JDCH for 3 days shy of six weeks. Her omphalocele has been closed, but the omphalocele itself is about the size of an orange on her abomen. She still has Tetralogy of Fallot, and an appointment with Dr. Aguirre next Monday on the 26th, most likely to schedule her heart surgery to fix her VSD, which is pretty big. It has already been delayed once, since at her last visit on March 1st, they found that she has an aortopulmonary collateral vein, which is helping supply her lungs with enough oxygen. Her saturation at her last appointment was still at 98-100%, so surgery was delayed for another month to let her grow. A few days after her appointment, we started noticing she was getting blue around the lips, nothing in her fingers or toes yet, and no "tet spell", but we are pretty confident that the time has come to set a date. Thinking it will be in April sometime, not sure when. We have to take her in to meet with the surgeon (Dr. Scholl).
We were using Facebook to update family and friends, as well as posting pictures of Jamie's progress. The listing of the posts are below:
December 12, 2011
Excited to meet baby Jamie tomorrow morning! C-section at 9:30am. Nervous / scared / uncertain about her future. We leave her in the capable hands of God and her Drs and surgeons at Joe DiMaggio. More details as we find them out.
December 13, 2011
Jamie is doing well. She is off of the oxygen. Dr Long painted Silvadine on her Omphalocele to keep infection away and keep the sac that is holding most of her liver and intestines safe until the Drs figure out the plan of attack. Her Omphaolocele is rather large at 9cm in diameter. She is getting a central line put in right now, but they couldn't find a vein to work so they will try again tomorrow. Her heart condition is doing better than I expected since she doesn't need O2 nor did she need the medicine to help her pulmonary tract receive enough blood. She did pee and poo a little so they said they was good for her renal condition but they will have the renal ultrasound read in the morning to confirm. They are also going to do some more genetic testing in the morning including an ultrasound of her brain. That is all I can think of for her update. Tara is doing well and visited Jamie this evening in a wheelchair. She is on ice chips and clear liquids for another day. Thanks again for everyone's support, Jamie, Tara, Christie and I really appreciate it. Tara is in room 248 and Jamie is in NICU A, both in Memorial Regional/Joe DiMaggio Children's Hospital.
December 14th, 2011 10:29 am
We just received a call from the NICU nurse stating that the Pediatric surgeon will perform surgery on Jamie this morning. We have to sign the consent forms shortly. I will post as the info comes in.
December 14th, 2011 10:35 am
Just found out that Jamie will be going into surgery sometime this morning for her omphalocele. We will be heading over to the NICU shortly to talk to the pediatric surgeon and to sign consent forms. Please continue to pray for our little girl.
December 14th, 2011 4:38 pm
Jamie is out of surgery. Dr Long said she did well and that her whole liver was outside her body. She put as much back in her abdomen as possible today without compacting the others organs. The next two days will be very critical due to the threat of swelling that could damage blood flow to any of the organs. She looks good but is on a respirator for the next week or so and is paralyzed artificially so she won't damage the repair. She might need a blood transfusion since her blood count is expected to lower. We will get to see her again after 6 or so.
December 15, 2011 10:37 pm
Baby Jamie today after her partial closure of her giant omphalocele. She is on a jet respirator that makes her breath 420 times per minute. One lobe of her lung is collapsed after last night and they are trying to have it inflated tomorrow. She is making urine very good today after they put a cath in. Her "O" is looking good today as can be told by its color and size. Her left middle toe is badly bruised and looks way different from the others but they are trying to find other places to put her IV and to get her blood gasses from. She is on 4% O2 over regular air tonight. They are allowing her to stay off of the meds that keep her paralyzed for now. If she start moving around and messing with her wound then they will have to put her back on. The giant heart in the picture is where her open wound from the surgery is so that we wouldn't make anyone uncomfortable. They put a arterial line in today to get a better blood pressure on her since the cuff was reading significantly different depending on the location they put it. She is starting to get puffy which was expected and is gaining water weight to bring her to 3.3 kilos (close to 7 lbs). She has so many things attached and reading and it looks overwhelming but she is doing well despite all of the smaller setbacks she had this morning. It has been an absolutely emotional day and a half but things are still looking upward. Hang in there Jamie, I know you can do it, you are a strong little girl.
Tara was discharged today with the Dr saying she was doing great and that her incision was healing faster than expected. 2.5 days for a c-section, so Tara is one strong cookie. She is pumping every three hours to bank enough for Jamie when she is ready for feeds.
Our social worker contacted us today and we received great news from her, they approved a room in the Connie Clubhouse that is basically a hotel room that we can stay in free of charge for a week at a time. This will allow our family and friends a place to meet before or after visiting and for Tara, Christie and I to have respite from all of the crazy ness of the hospital. She also cannot drive until told she can so the clubhouse will be soo great to get to see our child at any time we want. We have some other good news from her but I will wait til it is definate.
For our family and friends that would like to visit, there are no visitors between 6:30-7:30 am or pm. Other than that just make a call to mom or dad to make sure we will be around to let you in since only moms and dads can bring in visitors. Also you must fill out a signs and symptoms checklist that makes sure you aren't contagious.
Thanks for all your thoughts and prayers! She still needs them. I cannot believe the support and prayers I have seen for our little angel coming in from all over.
I (we) have to say Joe DiMaggio Children's hospital has been awesome. They are so kind and compasssionate everywhere we turn. They are willing to do just about anything for us anywhere we turn. I am thoroughly impressed with not only Jamie's care but our entire family's care.
December 16th, 2011 9:40pm
Jamie had a good day overall. Her right lung reinflated and is starting to slowly ween off of the jet respirator so that she can be on the standard respirator. Her surgeon Dr Long came to talk to us and noted that her incision looks good and that she may end up with a somewhat normal looking belly button after this is all over (it's a small thing but makes the future brighter). Her infection in her stomach sounds like it is starting to go away but the cultures will be back tomorrow to confirm. They have started weening her from her blood pressure medication, she was at a dose of 10 this morning and is now on 5 and they can take her off of it at 3. She has a defined reddish hue on her belly where everything was tugged and moved around during surgery. Above and below that she has the slight jauntice color but does not need the UV light at this time.
Tara is doing great and has been out pumping away. All the nurses are surprised how well she is doing. It is so important that she can pump b-milk for Jamie since her insides will have so many issues. They really make it easy here at Joe D for her to pump. They provide all the bottles, supplies, pump, etc.
Christie is staying with us at the Conine Clubhouse and it was nice to have some family time. We look forward to more of that tomorrow. Tara and I came to the lobby to have a date night consisting of sharing a piece of chocolate cake and writing this update.
December 17th, 2011 9:51pm
Another positive day. She is off the jet respirator and back on the standard one with room air, no additional O2. She is moving all around and very active. They had to restrain her since they wanted her hands off her open wound. This stinks to see since she wants to just go. The Drs are positive on their outlook. Her catheter was taken out and she made two small poops! Yay! That means her intestines have begun to work again. Her blood gasses were off this evening after the respirator swap, so I wouldn't be surprised if the jet was placed back on tonight even though they want to ween her completely
December 19th, 2011 9:32pm
Jamie's looking good without that respirator! She is on the CPap machine for just a little help for her lungs. Her incision looks good and Dr Long gave a good report today as she admired her work. Tara got to change a dirty diaper today, which is an awesome accomplishment, because that means everything has been kickstarted down there. She has been alternating between resting and wide awake and looking all around. They took her Arterial line out today so its back to the cuff for reading blood pressure. The nurses had to put her PICC line reinserted since the tape started loosening and the line started pulling out. The NEERS sensors, that measured blood flow across the head and kidneys, have been removed. Overall, Jamie had another wonderful day at Joe D. I can't say enough good things about this hospital.
Tara figured out what every three hours means. I love you babe!
Christie and g-ma came to visit today and brought pizza. I sat at work for a full day and it felt like an eternity but I received good news from Tara all day.
12-20-11 8:35pm
Jamie has a tattoo as you can see in the picture. See is basically status quo for the day. She is resting comfortably most of the day. Dr long's PA came in and said she looked good and that her bowels are still not ready for milk, so more IV lipids and TPN. We heard her cry for the first time that I can remember except for right after birth. I got the chance to change her diaper early this morning. It's the little things that make me happy. She had a good day though and she has made steady progress every day so far.
Tara ended up with a stomach bug and has stayed away from Jamie since this morning. Hopefully she will feel better in the morning.
We will be staying in the clubhouse for Christmas since they were able to keep us for one more week here. They have made us feel so good here and we have made it our home away from home.
1-1-12 8:36pm
Jamie's PICC line is out, all she has left is the feed tube! Also gave b-feeding a try and she did great. Taking that part slow which is hard but we will do what is best.
1-5-12 8:34pm
Jamie moved today to the D-room (discharge room). Dr Long said she is doing amazingly wonderful and that as soon as she can gain weight consistently then she might go home. She still has sensors and an NG tube in her nose for feeding. Tara has been starting to B-Feed and is up to about four times a day. In between those feeds they are giving her b-milk through the tube for one hour then a two hour break. She hadn't known what being hungry was until they took her off the continuous feeds.
Her belly is looking great! The wound is the shape of an "L" about 2.5" x 2.5" but is healing great. All her internal functions have been working like they should.
As a side note, all the scrubbing in to see her has done a number on our forearms to our hands. Christie has it the worst and anything I put on it hurts her more.
There was a baby boy named Bernard two spots down from Jamie that had been having the worst time the past week or so. Baby Bernard earned his angel wings today after a hard first couple of weeks of life. This event just makes me think how thankful we are to have two wonderful daughters that are so well loved. I would have never expected to see Jamie doing so well at 24 days old.
Thank you to all of those that have helped us out while dealing with Jamie! Mom and Dad for driving Christie around town and to and from school, Randy and Charles for mowing the lawn, Barbara and Martin for all the clothes for Jamie, all the guys at work who have helped us in so many ways, and all our family and friends who have kept us sane by visiting, praying, words of encouragement, etc.
1-7-12 9:56pm
Jamie's new private room with a view in the NICU. She moved here this evening. It creeps us out a little knowing she will be alone but the nurses get all of the vitals/alarms sent to their portable phones. She can still be discharged from here but we still don't know how long she will be here. She has been status quo for the last couple of days, but hasn't gained much weight (17 grams today).
1-13-12 6:41am
Our baby burrito Jamie on her one month birthday. She is doing well in the new NICU room. She still must be more consistent in her feeding and weight gain. She is on a 1-1 feeding schedule (b-feed/tube feed) after briefly trying 2-1 for one day this week. They are proactively treating her for conjunctivitis. Besides that she is status quo for the week.
Our time at the Conine Clubhouse has expired so we (Tara, Christie, and myself) have to move home this morning. At least we can sleep on the couch in Jamie's new room.
I still can't believe our baby is a month old already. It has been an exhausting month for us but knowing we have a bright future with her makes it all worth it.
1-17-12 9:59pm
Jamie & Christie hanging out.
Little J is getting big at 8 lbs. She had an EKG yesterday that she cried through for an hour and a half. The cardiologist called and said that the narrowing of her pulmonary valve was normal and expected. He would still like her to have her heart repair in about two months.
Jamie's feeds have been up and down but when Tara feeds her she seems to do better. We hope for her to get off the tube so she can come home.
1-20-12 7:08am
JAMIE IS COMING HOME TOMORROW MORNING!!
1-27-12 7:11am
Jamie made it home last Saturday from the NICU! More pictures to come...
Thursday, December 8, 2011
Getting Ready
Had another visit with the doctors, both Monday and today. Monday was Dr. Edwards. They measured Jamie and said she was 5 lbs, 10 oz, but that did not give an accurate size on her abdomen, so she's probably around 6 lbs total. Dr. Siudmak was today, just a follow-up, and we are cleared to go for c-section on Tuesday. I have one more biophysical, which is tomorrow. I'm also going to see if I can go ahead and do all my pre-op stuff tomorrow while I'm there instead of having to go back on Monday.
I've called all the other doctors and let them know date and time, and Joe got a call from Dr. Long's office letting us know that she will be the one doing the surgery on Jamie.
We are trying to finalize everything, have our time lines down, who's going to be where, etc. We decided that Christie will go to school that day, since hanging out at the hospital would get boring for a 4 year old. Also, she wouldn't be able to see Jamie right away anyway. Either Maryann or Big Joe will pick her up and bring her down. Same with my grandmother. She's not able to drive at night, so it's better for her to get a ride.
I really miss my family in times like this. I feel bad relying on Joe's family so much. I'm a pretty self-reliant person, so it's also making me a little crazy having everyone do everything for me. Wishing my dad was here, as well as my brother and sister.
I miss my mom quite a bit right now. For those of you that don't know, she passed away almost 17 years ago from cervical cancer. I missed her when Christie was born, and really wish she was here to be with me for Jamie, too. I have the best husband in the world and we can talk about anything, but I would like to think that if my mom had lived, we would have had a relationship that would be close and, I don't know, fulfilling. I think that's the word I'm looking for. Not really sure. Maybe supportive is better. Anyway, I miss having her here. I know she's watching, but it doesn't feel like it's enough.
Maryann is going to try to get tickets to the Nutcracker ballet and take Christie tomorrow night. That way, Joe and I might score one more date night before things get nutty. I also need to go to the mall and get my semi-annual ring appraisal, re-pack my bag, get started on Jamie's stocking, and try to find another gift for Joe for Christmas. His gift for me came early, and I know what it is, but I haven't opened it. Told him to wrap it up before I do open it, since I've been wanting this thing for over a year now. Yes, it's a Cricut cake machine. I was texting back and forth with a friend of mine who has cartridges for it, she's gonna sell them to me for cheap. Can't wait to get back into cake making.
We got our insurance information straightened out too. Took a while, and after many phone calls and about 3 hours on the phone, Joe and I both understand what's going on. A huge blessing is that Jamie is 100% covered for 30 days after her birth, with no co-pays or co-insurance. That's big, since it will cover her surgery and the first part of her NICU stay. Then it's a $5000 out of pocket before Cigna covers 100% of everything else. I'm pretty sure her open-heart surgery and PICU stay after will be covered. Don't get me wrong, $5000 is a lot of money, and it's going to take a while to pay it off. But compared to what we potentially could be paying, we'll take it. Maybe I'll get mondo cake orders...
I was able to get a 3-d picture of Jamie from my doctor's appointment this past Monday. It felt like such a blessing in a pregnancy where there has been so much worry. She's beautiful, and we can't wait to meet her.
I've called all the other doctors and let them know date and time, and Joe got a call from Dr. Long's office letting us know that she will be the one doing the surgery on Jamie.
We are trying to finalize everything, have our time lines down, who's going to be where, etc. We decided that Christie will go to school that day, since hanging out at the hospital would get boring for a 4 year old. Also, she wouldn't be able to see Jamie right away anyway. Either Maryann or Big Joe will pick her up and bring her down. Same with my grandmother. She's not able to drive at night, so it's better for her to get a ride.
I really miss my family in times like this. I feel bad relying on Joe's family so much. I'm a pretty self-reliant person, so it's also making me a little crazy having everyone do everything for me. Wishing my dad was here, as well as my brother and sister.
I miss my mom quite a bit right now. For those of you that don't know, she passed away almost 17 years ago from cervical cancer. I missed her when Christie was born, and really wish she was here to be with me for Jamie, too. I have the best husband in the world and we can talk about anything, but I would like to think that if my mom had lived, we would have had a relationship that would be close and, I don't know, fulfilling. I think that's the word I'm looking for. Not really sure. Maybe supportive is better. Anyway, I miss having her here. I know she's watching, but it doesn't feel like it's enough.
Maryann is going to try to get tickets to the Nutcracker ballet and take Christie tomorrow night. That way, Joe and I might score one more date night before things get nutty. I also need to go to the mall and get my semi-annual ring appraisal, re-pack my bag, get started on Jamie's stocking, and try to find another gift for Joe for Christmas. His gift for me came early, and I know what it is, but I haven't opened it. Told him to wrap it up before I do open it, since I've been wanting this thing for over a year now. Yes, it's a Cricut cake machine. I was texting back and forth with a friend of mine who has cartridges for it, she's gonna sell them to me for cheap. Can't wait to get back into cake making.
We got our insurance information straightened out too. Took a while, and after many phone calls and about 3 hours on the phone, Joe and I both understand what's going on. A huge blessing is that Jamie is 100% covered for 30 days after her birth, with no co-pays or co-insurance. That's big, since it will cover her surgery and the first part of her NICU stay. Then it's a $5000 out of pocket before Cigna covers 100% of everything else. I'm pretty sure her open-heart surgery and PICU stay after will be covered. Don't get me wrong, $5000 is a lot of money, and it's going to take a while to pay it off. But compared to what we potentially could be paying, we'll take it. Maybe I'll get mondo cake orders...
I was able to get a 3-d picture of Jamie from my doctor's appointment this past Monday. It felt like such a blessing in a pregnancy where there has been so much worry. She's beautiful, and we can't wait to meet her.
Wednesday, November 30, 2011
Jamie's ETA...
Went to see my OB Dr. Siudmak yesterday, and we finally set a date for my c-section, which will be on December 13th at 9:30 am. He gave Dr. Edwards a call and talked to her about whether a c-section was necessary for an o-baby, and it turns out that Dr. Long's not crazy after all. Apparently, many medical publications and many other countries deliver o-babies vaginally. In our case, because of the TOF and my gestational diabetes, we are still going to deliver c-section. This way they don't have to worry about not being able to monitor the heart while she's in the birth canal.
Anyway, I got kind of emotional after we left. My father-in-law took me and we had lunch together afterwards, then he took me home. I cried a little, if only because it's finally coming down to the wire and I'm just so worried. We've been able to mentally prepare for a long time now, but reality is going to start kicking in very shortly.
Joe and I were able to talk last night about how we were feeling about everything. You'd think this wouldn't be the first time, and it's not, but with him working so much and so late, we are feeling disconnected from each other. It doesn't help that I can't really go anywhere or do too much, but last night was good to talk. We both admitted that we were scared that Jamie might die. She's got an excellent chance being fixed and recovering, but I've read about so many little guys who don't make it due to complications from the omphalocele. Neither one of us dwells on that particular situation, but you can't help it coming up in your head occasionally.
We need to still clean out Christie's room and start getting set up for Jamie. I'm looking forward to getting in there and getting rid of at least half the stuff in there, if not more. We haven't done a clear-out of her room in over a year, and it's very overdue. We'll keep some things for Jamie, but it's not necessary to keep it all. Since the girls will be sharing a room, we are also going to need to figure out how to work the space out so that Christie will still have a place for her things. I think I'm going to start going through her clothing today, now that I'm thinking on it. Must be the nesting sensation.
Anyway, I got kind of emotional after we left. My father-in-law took me and we had lunch together afterwards, then he took me home. I cried a little, if only because it's finally coming down to the wire and I'm just so worried. We've been able to mentally prepare for a long time now, but reality is going to start kicking in very shortly.
Joe and I were able to talk last night about how we were feeling about everything. You'd think this wouldn't be the first time, and it's not, but with him working so much and so late, we are feeling disconnected from each other. It doesn't help that I can't really go anywhere or do too much, but last night was good to talk. We both admitted that we were scared that Jamie might die. She's got an excellent chance being fixed and recovering, but I've read about so many little guys who don't make it due to complications from the omphalocele. Neither one of us dwells on that particular situation, but you can't help it coming up in your head occasionally.
We need to still clean out Christie's room and start getting set up for Jamie. I'm looking forward to getting in there and getting rid of at least half the stuff in there, if not more. We haven't done a clear-out of her room in over a year, and it's very overdue. We'll keep some things for Jamie, but it's not necessary to keep it all. Since the girls will be sharing a room, we are also going to need to figure out how to work the space out so that Christie will still have a place for her things. I think I'm going to start going through her clothing today, now that I'm thinking on it. Must be the nesting sensation.
Monday, November 21, 2011
Pre-Term Labor AGAIN!
This past Friday (November 18), was supposed to be pretty much like my other Fridays, which included going to Memorial to have my NST and BPP (Biophysical Profile). Since Christi Academy (school where I worked) was having the annual Thanksgiving Feast, I wanted to at least stop by and say hello to staff, kids and any parents that were there. So we dropped Christie off at school, then stopped by Christi. It was really nice to see everyone, and it seemed as if everyone was happy to see me too. We stayed for about an hour, then had to get going, otherwise we knew we would spend the whole day in L&D triage. I should have sat for my visit to the school, but there were so many people that I wanted to see that I ended up standing for the whole visit. That was dumb, I guess, since I'm supposed to be on bedrest.
Anyway, we went to the hospital, had the tests done (took almost 4 hours to get done, the place was swamped. I think it was the weather, either high or low pressure), then had some lunch. After that, we went to a salon in Deerfield Beach to get a manicure and pedicure, since I had a gift certificate from my birthday that I hadn't used yet.
As soon as I sat down in the pedi chair, I felt a contraction. Hadn't even turned on the massager yet, and it hit me. I froze, thinking that this couldn't be happening again. So I waited it out, it stopped. Lucy ( the girl doing my pedi) got started, and I got out my cross-stitch to work on. Maryann was in the chair next to me, and we were relaxing. It was nice. About 10 minutes later, another contraction hit me. What worried me was that I was feeling it in my lower back, so I knew it wasn't Braxton-Hicks. I rode that one out too, then stopped my stitching. I said something to Maryann about it too. She was a little worried, but I told her I was going to take my procardia early and drink more water, which I did.
Finishing my pedicure, I went to get my nails done. I figured that if I was having contractions and if the baby was coming now, I wanted to get my feet and fingers done, at the least. Stupid, but since I don't get out much, it was the least I wanted. I was having contractions all through the pedicure, and continued to have them through the manicure, too. While waiting for everything to dry, I asked Maryann to get me another water, then we went home. Of course, we were hitting traffic, and I had to pee. Not comfortable.
Got home, and had to lay down, and was waiting for Joe to get home from picking up Christie from school. The contractions were getting closer together, and I knew we were going to the hospital again that night. Joe got home, packed up what we needed in record time and off we went.
We got to the hospital, and it took a while to get checked in, since I hadn't been formally checked out from that afternoon. Finally we got to go back to L&D triage, where I saw the same nurses as earlier in the day. They got me hooked up to the monitors, but the one that measured the contractions kept moving, or the nurse wasn't placing them right, because they weren't showing, although I was definitely having them. Poor Joe and his hand.
After much re-adjusting, contractions were showing and Jamie's heart rate was elevating. I was put on an IV for fluids, and was later given a shot of terbutaline to stop the contractions. This eventually worked, but i was admitted to stay overnight, which was a bummer. I had dilated to 4 cm, and the nurse that checked me said that she could feel digits brushing past her fingers.
By the way, can I just say that having them check you for how much dilation is REALLY uncomfortable? For those of you who have been there, you know what I'm talking about.
We stayed overnight, Joe got to stay with me in the room. It was a rough night, and neither one of us got much sleep, since we got the room at about 1:30 am and got to go to sleep by about 2 am. The nurse woke me at 3:30 to take my procardia, and I had a hard time falling back asleep after that. I think I did around 4:30, but was awake again for good by 6.
I got to have some breakfast later, and we just hung out, waiting for Dr. Siudmak to show up for rounds. Poor Joe waited until 10, then left to get himself something to eat. Turned out that doc didn't make rounds until 3 that afternoon. By that time, Katie, the new nurse had taken me off the monitors, which was nice. Those straps get itchy. My contractions had stopped that morning, and Jamie was looking good. Dr. Siudmak came, checked me out again, and I was allowed to go home. Strict bed rest with bathroom privileges only. So home we came, and it was nice to get back to my couch. Doc did tell me that at my next appointment we were going to schedule my c-section. I have to double-check when I see Dr. Edwards (perinatologist) again, and make sure Jamie will be big enough by whatever date we set.
In the meantime, I believe Joe re-scheduled Christie's tour of the NICU for this week. Have to check with him. It will be good for her to know where her sister is going to be after she's born, and why. I really appreciate the fact that Becky (NICU nurse) is doing this special tour for her.
Thanksgiving is this Thursday, and I'm looking forward to it. We are keeping it pretty low-key this year. I love to cook, and usually try to have lots of people over for the holiday. Since I'm not allowed up, I have to give up control, and let others do the job for me.
I have so much to be thankful for. My husband is the best, such a gift from God. I don't know where I'd be without him. And the rest of my family has been wonderful. My friends, for checking up on me, and our neighbors for helping out too.
Anyway, we went to the hospital, had the tests done (took almost 4 hours to get done, the place was swamped. I think it was the weather, either high or low pressure), then had some lunch. After that, we went to a salon in Deerfield Beach to get a manicure and pedicure, since I had a gift certificate from my birthday that I hadn't used yet.
As soon as I sat down in the pedi chair, I felt a contraction. Hadn't even turned on the massager yet, and it hit me. I froze, thinking that this couldn't be happening again. So I waited it out, it stopped. Lucy ( the girl doing my pedi) got started, and I got out my cross-stitch to work on. Maryann was in the chair next to me, and we were relaxing. It was nice. About 10 minutes later, another contraction hit me. What worried me was that I was feeling it in my lower back, so I knew it wasn't Braxton-Hicks. I rode that one out too, then stopped my stitching. I said something to Maryann about it too. She was a little worried, but I told her I was going to take my procardia early and drink more water, which I did.
Finishing my pedicure, I went to get my nails done. I figured that if I was having contractions and if the baby was coming now, I wanted to get my feet and fingers done, at the least. Stupid, but since I don't get out much, it was the least I wanted. I was having contractions all through the pedicure, and continued to have them through the manicure, too. While waiting for everything to dry, I asked Maryann to get me another water, then we went home. Of course, we were hitting traffic, and I had to pee. Not comfortable.
Got home, and had to lay down, and was waiting for Joe to get home from picking up Christie from school. The contractions were getting closer together, and I knew we were going to the hospital again that night. Joe got home, packed up what we needed in record time and off we went.
We got to the hospital, and it took a while to get checked in, since I hadn't been formally checked out from that afternoon. Finally we got to go back to L&D triage, where I saw the same nurses as earlier in the day. They got me hooked up to the monitors, but the one that measured the contractions kept moving, or the nurse wasn't placing them right, because they weren't showing, although I was definitely having them. Poor Joe and his hand.
After much re-adjusting, contractions were showing and Jamie's heart rate was elevating. I was put on an IV for fluids, and was later given a shot of terbutaline to stop the contractions. This eventually worked, but i was admitted to stay overnight, which was a bummer. I had dilated to 4 cm, and the nurse that checked me said that she could feel digits brushing past her fingers.
By the way, can I just say that having them check you for how much dilation is REALLY uncomfortable? For those of you who have been there, you know what I'm talking about.
We stayed overnight, Joe got to stay with me in the room. It was a rough night, and neither one of us got much sleep, since we got the room at about 1:30 am and got to go to sleep by about 2 am. The nurse woke me at 3:30 to take my procardia, and I had a hard time falling back asleep after that. I think I did around 4:30, but was awake again for good by 6.
I got to have some breakfast later, and we just hung out, waiting for Dr. Siudmak to show up for rounds. Poor Joe waited until 10, then left to get himself something to eat. Turned out that doc didn't make rounds until 3 that afternoon. By that time, Katie, the new nurse had taken me off the monitors, which was nice. Those straps get itchy. My contractions had stopped that morning, and Jamie was looking good. Dr. Siudmak came, checked me out again, and I was allowed to go home. Strict bed rest with bathroom privileges only. So home we came, and it was nice to get back to my couch. Doc did tell me that at my next appointment we were going to schedule my c-section. I have to double-check when I see Dr. Edwards (perinatologist) again, and make sure Jamie will be big enough by whatever date we set.
In the meantime, I believe Joe re-scheduled Christie's tour of the NICU for this week. Have to check with him. It will be good for her to know where her sister is going to be after she's born, and why. I really appreciate the fact that Becky (NICU nurse) is doing this special tour for her.
Thanksgiving is this Thursday, and I'm looking forward to it. We are keeping it pretty low-key this year. I love to cook, and usually try to have lots of people over for the holiday. Since I'm not allowed up, I have to give up control, and let others do the job for me.
I have so much to be thankful for. My husband is the best, such a gift from God. I don't know where I'd be without him. And the rest of my family has been wonderful. My friends, for checking up on me, and our neighbors for helping out too.
Tuesday, November 15, 2011
Dr. Long
I forgot in the post below about our meeting with our pediatric surgeon, Dr. Long. We met with her last Wednesday, and we weren't really all that impressed. Apparently she's the chief of pediatric surgery, and the NICU staff had nothing but good things to say about her.
My father-in-law picked me up and we met Joe for lunch, then headed over to the hospital. Our appointment was set for 1:30, so being the conscientious people we are, got there about 1:20.
We checked in, were given forms to fill out, and we were then put into a room to wait for Dr. Long. While we are waiting, a nurse (or someone that works in the office) came in and started to ask us questions, such as what was the purpose of our visit. We were kind of surprised that they were asking, and I asked the lady if they had my records. She said that they did not, and wanted info from me about the baby's condition. So we started giving her back ground information, and the longer it went on, the more concerned we become.
After waiting an hour, Dr. Long finally came in. She started talking to us in generalities about the baby's condition, and again, hadn't seen any of my records. By this time, we were getting a little ticked off. This was a consultation regarding the surgery our daughter was going to have, and she hadn't bothered to request my records or look over any information before meeting with us????
We questioned her on it, and she got a little bit of an attitude with us, then left the room, saying that she would get them and look them over. It took her staff another 30-45 minutes to get the records, of which they gave us a copy. She came back in, and was still talking to us in general terms, not really addressing OUR DAUGHTER'S condition. We get the fact that you can't make a concrete determination until she's born, but look at the records, and then give us some ideas of what to expect based on the tests we've had done over the last SIX MONTHS! If you're not looking at those tests, what was the point in having them?
Maybe it's not fair to make a determination on the surgeon based on her office staff and her attitude, but we were not left with a good first impression. Maybe we were spoiled by our meeting with the other two consultations we had (cardiac surgeon and NICU nurse and neonatolgist). They were prepared, knew who we were, what our baby girl's name was, what her condition's were, and didn't need to consult a file while in interview to know it. They acted like they cared, and didn't talk to us like we were ignorant.
Dr. Long and her staff did.
My father-in-law picked me up and we met Joe for lunch, then headed over to the hospital. Our appointment was set for 1:30, so being the conscientious people we are, got there about 1:20.
We checked in, were given forms to fill out, and we were then put into a room to wait for Dr. Long. While we are waiting, a nurse (or someone that works in the office) came in and started to ask us questions, such as what was the purpose of our visit. We were kind of surprised that they were asking, and I asked the lady if they had my records. She said that they did not, and wanted info from me about the baby's condition. So we started giving her back ground information, and the longer it went on, the more concerned we become.
After waiting an hour, Dr. Long finally came in. She started talking to us in generalities about the baby's condition, and again, hadn't seen any of my records. By this time, we were getting a little ticked off. This was a consultation regarding the surgery our daughter was going to have, and she hadn't bothered to request my records or look over any information before meeting with us????
We questioned her on it, and she got a little bit of an attitude with us, then left the room, saying that she would get them and look them over. It took her staff another 30-45 minutes to get the records, of which they gave us a copy. She came back in, and was still talking to us in general terms, not really addressing OUR DAUGHTER'S condition. We get the fact that you can't make a concrete determination until she's born, but look at the records, and then give us some ideas of what to expect based on the tests we've had done over the last SIX MONTHS! If you're not looking at those tests, what was the point in having them?
Maybe it's not fair to make a determination on the surgeon based on her office staff and her attitude, but we were not left with a good first impression. Maybe we were spoiled by our meeting with the other two consultations we had (cardiac surgeon and NICU nurse and neonatolgist). They were prepared, knew who we were, what our baby girl's name was, what her condition's were, and didn't need to consult a file while in interview to know it. They acted like they cared, and didn't talk to us like we were ignorant.
Dr. Long and her staff did.
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