Wednesday, December 28, 2011

My nurse just brought me a latte…

So, I wasn’t going to do blog posts of all the wonderful things my nurses, doctors, support people, etc, do and say, that make hospital bed rest a bit more tolerable, but on a daily basis, I’m humbled by the generosity, and kindness, of my care team.

Their giving, thoughtful nature was evident immediately upon my arrival after the rupture. When I say I had a full room of people, I mean FULL of people. They were all there to do a job, but they worked so well with each other, displaying a working relationship I’ve rarely seen. And I would say that I’m a fairly harsh judge, due to the years I worked at a major university teaching hospital, one known for not only medical excellence, but outstanding patient care as well. I had amazing coworkers, who clearly cared for each other, and their patients.

I obviously hadn’t planned on this (the rupture and subsequent hospitalization) happening, and therefore hadn’t charged my phone or iPad before coming into the city to do some shopping. That night, one of the nurses came in and said that she and her husband had just purchased a new iPad, and that I was welcome to use it. WHAT?!?! Who offers a patient, a stranger, something like that? I told her that I had my own, but it wasn’t charged. Before I knew it, she was back with a charger; she had her husband bring it to the hospital for me to use. I also found out that the doctor on call was going to run home and grab her charger for me, if the nurse’s husband wasn’t able to bring theirs in.

The nurses find ways to make everything better, even with a simple smile, or a wink. My first visitor was a nurse. She worked in my high risk OB’s office when I was pregnant with Kate, and when she heard that I’d been admitted, she asked if she could come in and visit. Several other nurses have stopped by to say hello, just because they happened to be at the hospital (picking something up, teaching a class), and wanted to run up and see how I was doing, or as some have said, see if I am still pregnant.

The doctors are wonderful, too. You’re supposed to see whoever is rounding that particular day, but in addition to seeing that doctor, my doctor makes a point to stop in as often as possible, just to check in. Her colleagues have been wonderful, and I’m glad they were made aware of my case, before any of this started. Not only have I received a high level of care, I’ve also received a lot of hugs and comforting words. As with anything, I have favorites, but all of the doctors are great, and if worse came to worse, I’d honestly feel comfortable with anyone from that department at delivery.

All of the lactation consultants at this hospital are also RNs. There’s one in particular who worked with Kate and I, extensively, both while we were here for delivery and for weeks afterward. She doesn’t work at this location very often anymore, but when she was here and saw my name on the board, she came into my room. She didn’t know why I was here, and we hadn’t talked in over a year, but she must have known it was a bad situation. She walked in, hugged me, and just cradled my head, as I broke down and sobbed. She ended up visiting with me for hours, and made sure I had her cell number. She also knows that my mom has Kate, and that my husband is overseas, so she offered to be with me for delivery, and said to call anytime, day or night. As if that weren’t enough, she and her husband came to see me on Christmas Eve, and brought me a gift.

The charge nurse has been wonderful, too. She has spent a lot of time in my room, just talking, and seems to know all of the right things to say to someone in my situation, which as no one has to point out, but sometimes do, is extremely rare. She also took on the responsibility of calling the local funeral homes to ask questions about making arrangements for Baby A, so that I wouldn’t have to.

One of the first days I was here, my doctor came bouncing in with Christmas decorations, and decorated my room a bit. She also brought in some books for me to read, books that she chose based on my interests. Even Santa stopped by last week, bringing a small gift for Kate.

I could give example after example of what my care has been like, the attitude of the staff, the way they’ve tried to include me in things (a staff potluck on Christmas Eve, coming in to paint my toes) just so I’d have a few minutes of normal.

And that brings me to today. I think word has spread through the floor that I love Starbucks. Daily, one of the nurses or doctors offers to bring me a latte (not a small offer since there’s no Starbucks in the hospital.) My day nurse and I were talking about Starbucks and coffee in general. She offered to run downstairs to the espresso cart to get me a drink. I repeatedly told her it wasn’t necessary, but she insisted. She just brought me a latte, and refused payment. P, it’s my treat next time.

If anyone has ideas of things I could do for the staff, to show my appreciation, please let me know. I have a basket of Lindt truffles and other candy out for them, but I’d like to do something else, something more tangible. They deserve it!

Friday, December 23, 2011

Guess where I’m spending Christmas, and hopefully the next seven weeks?

December 14, I had an appointment with my high risk OB. Her plan, at that time, was steroid shots (for Baby B’s lungs) at 34 weeks, amnio to check lung maturity at 35 weeks, then schedule the c-section depending on the amnio results. She’d also met with her department to discuss my wishes with them. Basically, that I don’t care what the department policy is, or who’s on call, I want her at delivery. Everyone was in agreement that under the circumstances, that was okay. The meeting also brought them up to date on my case and history, information that would prove invaluable in the coming days.

Two days later, last Friday night, at 26 weeks 5 days, I was at the mall with my mom, grandmother, and Kate. All of the sudden, I felt my water break. Blood, amniotic fluid, and a mad dash to the hospital. I’d called ahead and they were expecting me in L&D. I had a room full of people, starting lines, asking questions, making phone calls, blood work, ultrasound, the works. The ultrasound showed that Baby B had a good fluid level and strong heartbeat, and it appeared that it was Baby A’s sac (the “non viable baby” as he’s called, tears) that had ruptured. Then the contractions started.

I was put on a very high dose of Magnesium Sulfate. I’d heard of this med before, but wow, nothing compares to the experience. To be honest, the details of last weekend are a little fuzzy; that is a strong drug and I was so, so sick. Imagine the worst flu you’ve ever had, hot flashes, inability to control your limbs, light sensitivity, vomiting. Yeah, that’s Magnesium Sulfate.

Back to Friday. So yeah, I was now contracting every two minutes and SCARED. It takes A LOT to scare me, especially in a medical setting. I was terrified, shaking, and even tearful. I know 26 weekers can survive, but I really wanted 35 weeks, and still do. While they worked on me, they had the NICU team come in. After speaking with the neonatologist, I thanked him and said I hoped to not see him for 8 weeks or so. The look of disbelief on the staff’s faces was too much. They said they were just hoping for 48 hours at that point, enough to get the steroid shots in for Baby B’s lungs. I also found out they chose the Mag Sulfate because it offers “neuro protection” and because I was on heparin. I couldn’t believe this was happening, most of the time, I still don’t.

Over the weekend they tried to make me comfortable and prepare me for the worst. I am happy to say that I was able to get the two doses of Betamethasone (for lung maturity) and eventually the contractions stopped, so I was weaned off of the Mag, though not before becoming violently ill Saturday night. They did blood work several times a day to test my Mag levels, which I later found out were sky-high. In addition to the contractions, infection is a major concern. The sac that provided a barrier of protection is gone, so I’m getting Erythromycin and Amoxicillin every six hours, vitals every two. The other big concerns are cord prolapse and placental abruption, though one doctor said the risk of abruption goes down after 24 hours of PPROM, so I’m way past that.

After passing the initial 48 hours, people seemed to relax a bit, and then it was time to make longer plans. My perinatologist is out of town, but my high risk OB spoke with his partner. The perinatologist said that he absolutely wouldn’t let me go past 34 weeks. Her response to him was that she was just trying to get me to 30 at this point. I’m sure I was visibly disappointed when she told me that, and I mentioned that I’d hoped for 35. She said no, but that if I make it to 30, we can set new goals.

Strict hospital bed rest is hard. And before I explain, I KNOW I’m in the best place, and I KNOW that every day I’m here, is a day Baby B is not in the NICU, but yes, this is tough, so now I’ll whine, a bit. For the first several days I had multiple IVs, a catheter, 24 hour monitoring of Baby B, and zero privileges. As in, you do not get up from bed for any reason, none. Want to brush your teeth, the nurse brings your toothbrush and a Styrofoam cup. Need to go to the bathroom, voila, the foley catheter is already in. Want to stretch your legs, too bad, you’re hooked up to the sequential compression device, which inflates every five seconds, yes, I counted. Little by little, the doctors have “liberalized” my privileges. I’m now catheter free and depending on which doctor is rounding, I get sitting showers of either 2, 5 or 10 minutes.

The loss of independence has been hard, very hard. I’m used to doing things myself, when I need to. If I go to the bathroom, I have to ring for the nurse, then have monitoring upon returning to bed. My meds are brought in on a schedule. Food is eaten in bed. I’m dependent on everyone for everything. That is hard.

Kate is doing well, under the circumstances. We are VERY lucky in that this (PPROM) happened here. My mom and Kate are close, so she’s enjoying her time with Nana. They visit often, but it’s difficult. She’s too young to understand, and this is a scary place for kids. We’re getting the room decorated and hopefully with more time, she’ll become more comfortable. I’ve just never had to be away from her before, so this is tough.

I’ll be updating the blog a lot more often. As of today, I’m 27 weeks 6 days, and still planning for a 2012 delivery!

Thank you for your continued support and prayers.

Wishing you a very Merry Christmas!

Thursday, December 22, 2011

Very sad update

I apologize for taking so long to update. I wish I could go back and do things on my schedule, but I was trying to be sensitive to other people, and give my husband time to inform people of our devastating news, versus having them read it on the blog. It turns out that he did notify everyone; they’ve just chosen to remain silent, whatever. I have MUCH bigger concerns at this point.

Our sad news, we lost Baby A in November, during my 22nd week of pregnancy. The grief is overbearing at times, but I have to be strong for Baby B. She is doing very well, continuing to get at least one ultrasound a week and looking great.

And for the next blog update, you won’t believe where I’m spending Christmas.

Friday, November 11, 2011

another appointment, another diagnosis

No, unfortunately I’m not joking.

On Tuesday I saw my regular perinatologist. The detailed u/s showed some growth discordance.

On Wednesday I drove to the University of Minnesota. After another detailed u/s, the new perinatologist and I had a nice chat. He’s a Washington native, too, and very nice. He said he agreed with the original diagnosis, but “we’ll let the cardiologist confirm it.” We discussed delivery and while he wasn’t thrilled with the idea of me delivering locally then transferring the baby, he said, “We’ll keep our options open.”

Then it was off to pediatric cardiology for another fetal echo; this time, on both babies. The new pediatric cardiologist came in to look at the pictures, then we went to talk.

There is a FOURTH diagnosis. Double Outlet Right Ventricle (DORV). So, now we’re dealing with DOVR, TGA, VSD and PS. Devastating news. The newer Arterial Switch Operation is completely off the table, not even an option. The course of action now is an injection of Prostoglandins immediately after birth. Within a week, placement of a BT Shunt (3 weeks in the hospital.) She said these kids have major issues with suck, swallow breathe and reflux, so he needs to demonstrate that he can gain weight and hydrate. He’ll be followed closely by cardiology and at some point, have the Rastelli procedure (she said likely between 5-8 months). They’ll build a Gore-tex conduit in the heart, which of course brings another set of issues, introducing a foreign material, which the body fights, plus the conduit has to be replaced as he grows and with buildup. Estimated hospitalization time for this is 4 weeks.

I asked about causes and she said nobody knows. I told her that I’d heard there’s a higher incidence in IVF babies and twins. She said that was true. I also told her that I’d read things online such as poor maternal nutrition, alcohol use during pregnancy, diabetic mother, etc. She said none of that is true and that I certainly wouldn’t find it in medical/ cardiology literature. As for how common something like this is, she said, “About 10 cases a year.” DORV is very rare.

The cardiologist wants additional chromosome testing, ultrasounds of the head and kidneys, and a few other things, right after birth. She also said the lungs can be compromised, so throughout life, the slightest runny nose means a trip to the pediatrician, concerns about RSV, etc. Six and a half hours later, I left. Then drove the four hours back, in the first snow of the year. Don’t I have all the luck?

Yesterday I was a confused mess. I called the original pediatric cardiologist and he met with me within hours. The discussion was very informative, and he clarified the need for additional chromosome testing (which hadn’t made any sense to me since the amnio was normal.) Apparently there are some cardiac lesions that are associated with chromosome issues that aren’t included in the amnio. He named one in particular, which sent me marching upstairs to my perinatologist’s office (they’re in the same hospital.)

My perinatologist’s nurse showed me the test results, negative. She also said my doctor was in, if I wanted to see him. I waited for him to finish seeing patients, then he and I sat down for another long, very helpful discussion.

This morning I left a message for my high risk OB’s nurse, and had asked that she call me. My doctor called instead; she’d just read the reports from the U. We had another long talk. She also informed me that she’d spoken with the neonatologist and he said that if I wanted to deliver there, he was okay with it. One of her partners brought up the issue of transferring the baby to Minneapolis, in February, the concern being weather/ blizzard related. Of course with the new diagnosis, my doctor doesn’t think anyone will be comfortable with delivering locally :(

So, where does this leave us? Well, obviously in the hands of some fantastic doctors. My high risk OB, original perinatologist and original pediatric cardiologist have to be some of the most caring, compassionate providers I’ve ever met. Ever. Of course we are devastated, beyond words, devastated. For now I’m scheduling appointments with other providers, researching like mad, and making a quick out of state trip for additional opinions.

Baby A is a very sick little boy, and we could use all the good thoughts and prayers you have.

Monday, November 7, 2011

First appointment in Minneapolis is scheduled

I received a call from the University of Minnesota. It seems that both my perinatologist and pediatric cardiologist contacted them. U of M wants to see me ASAP, so they have me scheduled for an ENTIRE day of appointments later this week. Repeat fetal echo, another detailed U/S, meeting with another perinatologist, another pediatric cardiologist, then a meeting with the “team” to discuss the delivery plans. She said they want to discuss the delivery plan since I’m “getting so close.” Err, I’m only 21 weeks, and considering my goal is 38 weeks (though probably not very realistic), I don’t feel that I’m getting close, at all. Oh well. The appointment is scheduled and this will be the first of many ‘leave the house by 5am, drive 4+hour’ appointments.

Friday, November 4, 2011

20 weeks 2 days, appointment with my high risk OB

On Wednesday I saw my high risk OB. It was a fantastic appointment. Labs and blood pressure are perfect! We discussed the appointment with the pediatric cardiologist and the previous appointment with the perinatologist. After telling her some of the highs and lows of the appointments, she shared some personal experiences, which helped TREMENDOUSLY.

I nervously sat in the chair as I told her of my desire to deliver at her hospital, with her. Much to my surprise, she didn’t say no. Things could still change (much depends on the next fetal echo), but she’s going to move forward as far as discussing it with her partners and speaking with the head of neonatology. Last time I went into labor, and delivered, in the middle of the night, she wasn’t on call. I fear that will happen again, so she’s going to request permission to deliver me, even if she’s not on call. She doesn’t think this will be a problem since they’ve granted special requests for her to deliver other doctors and nurses, in the past. Plus, she’s basically the head of the department, so hopefully speaking with her partners is just a formality. She also wants the neonatologist in the OR when I deliver, so she needs to get his okay too. The BIG problem with all of this is that she’s going to be out of town for most of February (medical conferences). The timing couldn’t be worse.

She has concerns about preterm labor and said that she’ll likely give me steroid shots to mature the babies’ lungs, in case they come early. As for now, everything is stable and she doesn’t need to see me for two weeks. She gave me a big hug and I seriously left my appointment with a bounce in my step, for the first time in weeks.

Then I hit reception…

I told the new receptionist that I needed to schedule an appointment with Dr. Hopeful in two weeks. She told me it wasn’t possible; she was booked throughout the month, and asked who my second choice would be. My jaw dropped. Second choice? Um, no. I explained to her that I was high risk, and only wanted to see my doctor. The other receptionist overheard this and told the new girl to speak with my doctor’s nurse. The new receptionist said she’d do that, but told me to keep a second choice in mind.

At 8:30am yesterday morning, my doctor’s nurse called. The receptionist had spoken with her, she then talked to Dr. Hopeful, and Dr. Hopeful told her to fit me into her schedule in two weeks AND book my next SIX appointments. HOORAY!!!!!!!

As completely awful as this is, and it is AWFUL, I have such amazing doctors!

Thursday, November 3, 2011

First fetal echocardiogram, first appointment with the pediatric cardiologist

Tuesday started with the echo. For over an hour and a half, I was on the table while the tech took hundreds, yes hundreds, of images of Baby A’s heart. It is clear that something is wrong, and the tech was an angel, absolutely as sweet as could be.

After that, I walked across the hall to meet the pediatric cardiologist. Everyone always asks, “Will someone be joining you?” “No, it’s just me.” A sure sign you’re about to get bad news, and that most people don’t go through this alone.

Unfortunately, the perinatologist’s diagnosis is correct, and lucky us, not one, but three heart defects.

Transposition of the great arteries (TGA)

Pulmonary Atresia/ Stenosis

Ventricular Septal Defect

The pediatric cardiologist drew pictures and diagrams, as we talked. Fortunately I know a bit more than the average bear about normal heart anatomy, so we were able to move through that portion rather quickly. As usual, causes were discussed. As usual, it comes down to a slightly higher risk of heart defects in IVF babies, twins, and sometimes really bad things just happen.

Moving on to the “what does this mean” portion of our discussion…

He started by saying that this is much more complicated because I’m pregnant with twins. They are very concerned about preterm birth, since I delivered a bit early with Kate, and twins generally come even earlier. The “goal”, in his opinion, is to get me to 35 weeks, anything after that is a big bonus. If I can make it to 35 weeks, they should be able to do open heart surgery within a few days of birth, as scheduled. Otherwise, we’ll have some NICU (neonatal intensive care unit) time before surgery.

The best-case scenario is that they’ll be able to do a newer (about 20 years old) procedure called the Arterial Switch Operation (ASO). He said they “think” this operation will ultimately provide the best quality of life, best long-term outcome for TGA patients. Unfortunately, since we have some other issues, the ASO might not be possible, in which case they’ll do an older procedure (plus end up building an additional structure with a foreign material), known to have more subsequent long term effects, additional open heart operations, and possibly leading to a heart transplant one day.

One of my major concerns is being on pump during surgery, as I know many adults have said they’ve never felt the same after being on the heart lung machine. We discussed the consequences, long term effects (not well studied in children), etc. This is one of the times I really, really wish I hadn’t worked in cardiac surgery. I know what it’s like to be in the OR, what it’s like to see a patient’s sternum cut open, to go on bypass, etc. Very different when it’s your child, your newborn. He completely agreed.

We discussed hospitals and surgeons at great length. The bottom line is that bad things can happen anywhere, and things can go downhill quickly in any OR, which I know. It’s important to me that we have a surgeon with a lot of experience, not someone who sees maybe five TGAs per year. He gave me the names of surgeons at Stanford, Boston Children’s, CHOP in Philadelphia, and a few others. Location wise, a hospital in Minneapolis would be ideal, as it’s only 4+ hours (each way) from where I just leased a townhouse (days before the initial diagnosis). There are three options in Minneapolis (U of M, Children’s and Mayo). The pediatric cardiologist doesn’t think that one is better than the others, though he personally knows the surgeons at U of M and is still on clinical staff there. The fetal echo films were already en route to U of M as we were speaking, though they can be sent anywhere, if we choose to go to a different hospital. They are making arrangements for me to meet the “team” at U of M sooner than later, in case of preterm labor, and in case I don’t think it’s a good fit, we’ll have time to go elsewhere.

Another topic I brought up is delivery. I’ve been told repeatedly that I need to deliver at a major cardiac center, which I completely understand the rationale behind. However, knowing that the baby has a severe VSD (which buys some time), and other circumstances, I asked the cardiologist about delivering locally, as originally planned. He said the “team” wouldn’t like it (which I know), but due to our unique circumstances, he’d push for it, if the VSD is still large, and everything else looks stable. Before the judgment starts, please know that I’ve put a lot of thought into this, and I know the risks. That said, I’m trying to figure out how to divide myself three ways, add in that I have a very sensitive, almost 16 month old, who’s already been through a lot over the past few months. I’d like her to have stability as long as possible, before her world is once again turned upside down. The other factor is that often times, TGA is not diagnosed in utero, so it’s a big surprise after delivery, chaos ensues getting the baby transferred, etc. In my case, everyone will know ahead of time, plans can be in place, and if we do end working with U of M, a medical transport from here to there is not a huge undertaking. Plus, I still have time to think about this and change my mind. He repeatedly said he doesn’t envy us, or the decisions we have to make.

The plan is to repeat the fetal echo between 28-30 weeks. He said he’s always available, if I have any additional questions or need anything. Three hours, well spent!

Thursday, October 27, 2011

Amnio results, and another appointment with the perinatologist

Yesterday I had a 45 minute consultation with my perinatologist; we discussed a variety of topics and went over the test results.

I’m thrilled to announce…

amnio results on both babies: normal

22q deletion (ordered on Baby A): normal

infectious disease blood work (rubella, toxoplasmosis, etc): negative

test for the 100 most common mutations of Cystic Fibrosis: negative

The majority of my questions can only be answered by the pediatric cardiologist (appointment next week), but it was helpful to talk to my doctor. I’ll type up a full recap at some point.

Thank you so much for the lovely comments and support. It really does help! Anonymous, watch your mailbox :)

Saturday, October 22, 2011

Not the post I wanted to write (very long)

Once again, I apologize for not updating earlier; it’s been a really difficult week.

Last Thursday (9ish days ago), I arrived at my ultrasound and appointment with the perinatologist, ignorant, at best. I expected the standard detailed ultrasound, confirmation of genders, and had then planned to spend the remainder of the day with relatives visiting from out of town. That’s not what happened.

The ultrasound started as usual, lots of measuring little bones, counting bones in tiny pinkies, looking at the organs, and yes, confirming genders.

Baby A is a BOY!

Baby B is a GIRL!

Thinking back, I do remember noticing some blood flow irregularities on Baby A’s scan, but each time I’d start to concentrate on what I thought I saw, the tech would move the transducer, begin to talk about other organs, etc. I did say something about the lack of space, which she said was due to a contraction. She followed that by saying it wasn’t a big deal. I was surprised by the clarity of the ultrasound. She said they are the newest and best machines in the world, and went on to say how lucky the hospital is to have three of them, words that would later haunt me. An hour later, it was time to do the first cervical length ultrasound. It was like an IVF appointment all over again. She had to redo it later, since I was having another contraction.

My perinatologist entered the room, started scanning me again, looked at the hundreds of images the tech had taken, then said that he was “concerned about Baby A’s heart.” At first I wasn’t worried, then more people entered the room, and my doctor said he would explain what was happening, and draw me some pictures. A nurse walked over and asked if there was anyone she could call. Then I knew, it was serious. The tears started to fall. Pictures were drawn, more scanning, then the recommendation of an emergency amniocentesis, on both babies. I called my parents to let them know what was happening, and ask for prayers.

More people entered the room, supplies were brought in, and I was prepped for the amnio. Having worked in surgery for so long, I carefully watched my doctor sterilize my stomach. Good technique. The amnio hurt (probably the 1000s of heparin injections and subsequent scar tissue), but was over fairly quickly. In addition to the amnio, he ordered several blood tests. They are testing for “anything and everything” at this point. There were questions about whether Cystic Fibrosis runs on either side of our families, to my knowledge, it doesn’t. They are testing that too.

Then it was time for more discussions. It all seems like yesterday, but also so long ago, so I’ll try to remember what was said.

I will not be allowed to deliver at my chosen hospital, or with the high risk OB I want, and have worked with during both pregnancies. The baby will need open heart surgery within days, if not hours of birth. This followed by weeks, maybe months, in intensive care. I’ve been referred to a pediatric cardiologist, and he will do additional testing, and provide more information. I see him on November 1. They didn’t want to schedule anything sooner, since the babies are still so small.

I’m not going to identify the defect, until it’s confirmed by the pediatric cardiologist. When I ask the perinatologist what could have caused it, he said there’s a higher risk in IVF babies, twins, and sometimes just really bad luck, and that we’ll never know which one it was. I’ve also learned that there’s a higher rate of this defect in Caucasian males, versus females. My doctor spent over four hours with me, which was nice, though this is definitely a very serious condition, because four hours with a perinatologist is unheard of.

The following Monday, I had an appointment with my high risk OB. She walked into the room and just hugged me. The appointment was a lot of hugs, and a lot of tears. I’ve lost weight, and she said that while she understands that I don’t have an appetite, it’s dangerous to lose weight, especially with multiples. She suggested liquid protein shakes, anything to get some calories.

When I told her that the perinatologist said I wouldn’t be able to deliver with her, she confirmed it. I have to be at a university hospital with a pediatric cardiothoracic surgeon. She said if the baby were to be born in this area, they’d fly him to the other hospital (a 4+ hour drive).

Even though I’ve always known her to be very pro breastfeeding, she recommended that I not even try this time. I had so many problems with Kate, and with a critically ill baby, it will just be too much stress. Plus, there’s no way to run in and out of the intensive care unit to feed the other baby.

During the appointment, she asked if I’d started searching for a nanny, yet. She said that if I write something up (job description, situation), she’ll make sure it’s posted in the NICUs. She said even if we don’t get an active NICU nurse, they usually stay in touch with former coworkers, and someone might be looking for a part-time job. She said especially in this situation, who better than a NICU nurse as our nanny.

Obviously it’s for the “team” at Children’s and the University to decide, but she thinks they’ll want me to move to the hospital at 34 weeks. Again, it’s up to the other specialists, but I’ll probably start regular appointments with the “team” before Thanksgiving. Wonderful, 4+hour drives, in the Midwest, in the winter.

My high risk OB does an ultrasound every other week. I told her that I just wanted her to do the scan, and tell me that she doesn’t see what the perinatologist saw. She said his machine is much better, and that he sounded “very sure” of the diagnosis when he called her. Again, a lot of hugs, a lot of tears.

Preliminary amniocentesis results (FISH)

The initial amnio results were scheduled to be back on Monday, but I had to wait until Tuesday. The MFM nurses were out (one had a family emergency) and my doctor was in another city learning to do “in utero transfusions on twins.” On Tuesday I met the genetic counselor to discuss the results. The initial amnio tests chromosomes 13, 18, 21, X, Y. So far, everything has come back normal, and there is definitely both a boy and a girl. The genetic counselor said the results (minus the gender results) could still change, but generally they don’t. We should have the remaining results next week. My doctor ordered an additional test called 22q; it’s not back, either. For now, it looks like this is ‘just’ a life-threatening heart defect.

I will keep you updated as I get more information. Prayers and good thoughts are very much appreciated. I’m still in shock.

Wednesday, October 12, 2011

Kate’s first trip to the ER

Last Saturday (err, 2 Saturdays ago), Kate woke up from her afternoon nap crying and wanting to snuggle, which is not normal behavior for my on-the-go explorer. After 30 minutes of off and on sobbing, and wanting to be held, I started looking for an urgent care clinic in the area. My mom happens to live in an adorable little town, which is unfortunately, in the middle of nowhere. Having no luck finding an urgent care clinic, and with Kate’s pediatrician over an hour away, plus her hatred of the car, plus it being a Saturday, we took her to the ER.

As we waited (all of five minutes) for the doctor, I started to question whether the ER was necessary. Maybe she was just having an off day, and I was over-reacting. Then I remembered something Kate’s Irish pediatrician had once said. “You know your child better than anyone else. If you think something’s wrong, bring her in, and I’ll figure out what it is.” The only thing that made sense was an ear infection, and sure enough, it was an ear infection.

Now, I know I’ve been out of the U.S. for several years, but look at this thing. How cool is that?

To get Kate’s prescription, I walked into the lobby of the hospital, put a code in this machine, and voila, Amoxicillin. We had a Pyxis machine near the ORs at my old hospital, but that was for our staff to use. High fives to whatever brilliant soul invented InstyMeds and saved me a trip to the pharmacy.

To the staff at the local hospital, you were awesome. Thank you for seeing us so quickly, and being so patient and kind to a very upset, screaming Kate. Yes, dear Kate comes completely undone every time she’s approached with a forehead thermometer. She about lost her mind when the nurse tried to put the pulse ox on her toe, and she was understandably inconsolable while we held her down to have her ears examined. Again, thank you for a great ER experience (as good as an ER experience can be), and thanks for the gifts for Kate (small bunny and stickers). As great as you were, we hope to never see you again.

16 week appointment

I am so far behind. Shame on me for updating with a 16 week appointment, when I’m now 17 weeks 2 days.

As usual, the appointment started with the nurse going over a few things; then she mentioned that since I’d just had the detailed ultrasound two weeks ago, my doctor would just listen to the heartbeats with the Doppler. When she entered the room, my doctor told the medical student to go get the ultrasound machine. Yay. Both babies looked great, moving all over. In other news, my doctor said she’s fine with me discontinuing the Crinone at this point, so if the perinatologist is okay with it (I see him tomorrow), I’m done. Blood pressure and labs continue to be great!

Wednesday, September 28, 2011

14 week appointment and med update

(apologies for the formatting issues, I've been fighting with Blogger for over an hour, and I give up)

Since I’m now 15 weeks 2 days, I thought I should probably update with the 14 week appointment. Where does the time go?!?!

First a med update:

12 weeks 6 days: done with estrogen tablets

14 weeks 3 days: done with Gestone (progesterone in oil)

Yes, this nasty stuff

15 weeks 1 day: done with Prednisone (may the puffiness in my face soon disappear)

Crinone, you are next to go (hopefully within 2 weeks)

Okay, 14 week appointment…

Baby A:

Baby B:

The ultrasound tech confirmed genders on both, and after discussing it with my husband, we will be sharing the news. I want to wait a little bit longer and have a few more ultrasounds (just to be sure). Also, after talking to some friends about what happened last time, the consensus is that some people are just rude and will therefore make inappropriate comments, but that’s certainly not a good enough reason to spoil the fun for everyone else. So yes, a gender announcement within two-ish weeks!

My doctor seems very pleased. My labs are great, BP was 106/68, and she checked my ankles for swelling, none. The medical student that was with her decided to use the Doppler to check the heartbeats and had I not JUST come from a 30 minute ultrasound, I would have been terrified; she couldn’t find Baby B’s heartbeat. Baby A was fairly easy to find, Baby B was, as usual, all over the place and impossible. Finally my doctor took the Doppler and even she was only able to find Baby B for a couple of seconds (not even the 6 seconds necessary to get a decent count).

She’d already received the ultrasound pics and report. Baby A is measuring at 17%; Baby B is measuring at 12%. She said she’s not concerned since they’re within 5% of each other. I did mention the perinatologist’s comment about wanting the babies out by 38 weeks. She said that they would absolutely be out between 37-38, probably closer to 37. There's just too much that can go wrong past that point and particularly with my risks, they're better out than in. Overall, a great appointment. I see her again on Monday.

Sunday, September 18, 2011

13 weeks 3 days, first appointment with the new perinatologist

On Thursday, I had my first appointment with the new perinatologist. Things started as usual, going over medical history with the nurse, and then an ultrasound.

All but one picture I was given are 3-D, so if you find it creepy, sorry. The ultrasound tech guessed the gender of one of the babies, though it’s still really early, and honestly, after a comment we received when we shared Kate’s gender, I’m not sure if we’re going to tell this time, or not.

Babies: both are measuring well, within 2 days of each other (very important) and their heartbeats are great.

The perinatologist was impressive. We covered a lot (most of it was him asking questions and going over the game plan, though he continuously asked me if I had questions, too). Basically every risk with a singleton pregnancy is multiplied 4-5 times with twins. So while there was a great risk of fetal demise with Kate, it’s even worse this time. He wants the twins out by 38 weeks (he said especially because they are IVF twins, which I need to get more clarification on, since I’ve never heard of that before). Though he doesn’t expect me to make it to 38 weeks, anyway. He’ll do the anatomy scan and look for chromosomal issues at my next appointment (17 weeks) and at the 21 week appointment, he’s going to do a fetal echocardiogram. Apparently IVF babies have a slightly increased risk of cardiac issues, again, multiplied risk with twins.

At 32 weeks, if not before, I’ll start BioPhysical Profiles (non stress tests and ultrasounds) once or twice a week. I had them with Kate, and actually found it somewhat comforting to be monitored so closely.

As for travel, the short answer is no. He said that while he doesn’t know what kind of care is offered in Slovakia, he does know what’s offered in the U.S., and it would be too risky for me to travel. We talked about it in detail, but yeah, short answer, I’m not going to Slovakia. He said he “highly recommends against it.” So that’s that.

Tomorrow I see the high risk OB again, and I’m interested to hear her opinion after reading the perinatologist’s report.

Sunday, September 11, 2011

12 weeks 5 days, visit to the ER

first Rhogam shot for this pregnancy

first, and hopefully last, ER visit for this pregnancy

So, I’ve been really bad about updating the blog, but once again, I’ve been plagued by first trimester cramping and spotting. For weeks I excused the cramping as uterine stretching, and it most likely is. Well, the other night the spotting increased, then bleeding, then intense cramping. By yesterday afternoon it was just too much.

And once again, the hotel shuttle driver to the rescue (It was just about time for Kate’s nap, plus my husband had packing to do, so it was easier to go alone). I just have to say once again, I adore the staff at the hospital I go to; EVERYONE I dealt with yesterday was professional and kind.

My first nurse had also done IVF, so I think she took a special interest in me. She was beyond sweet and attentive. When I was being wheeled to ultrasound, she said to be sure to push the call light when they brought me back, so she could check on me right away. I was wheeled back to ultrasound and very relieved to hear the words, “There are two heartbeats.” Both babies are measuring well.

Baby A: 6.3cm, measuring 12 weeks 5 days, heart rate 157 bpm

Baby B: 6.4 cm, measuring 12 weeks, 5 days, heart rate 161 bpm

The ER doctor recommended “total rest” until I see the perinatologist on Thursday. He also thought I should have a Rhogam shot, which I agreed with, but he wanted to discuss it with the OB on-call, first. I knew it was going to be a long wait as he walked out the door and I heard them call the first of MANY traumas.

I waited, and waited, and waited. The night nurse came back to tell me there was a problem in the pharmacy, and they “hoped” to have the Rhogam ready around 8pm. When she finally came to give me the shot, she apologized profusely for the delay. My response was, “Meh, it’s the ER, it’s life, it happens.” She said she wished everyone was as understanding.

Arrived in the ER: 3:15pm

Discharge papers printed and brought in: 4:58pm

Walked out of the ER: 8:46pm

It was a long evening, but the absolute most important thing is that both babies are alive and well.

Friday, September 2, 2011

11 weeks, nuchal scan

On Monday I had another big appointment (sorry it took so long to update, busy week).

First I had a meeting with the genetic counselor. She gave me several options for testing, including integrated versus sequential, and CVS, and an amnio, and more blood tests. I was already scheduled for the nuchal, not because we would have terminated had there been a problem, but because I’m a type A, organizer, planner extreme and if there were an issue, I would have had time to prepare and get the best specialists on board, etc. Anyway, I'm just not comfortable with the more invasive testing, given the miscarriage risk. I went ahead with the nuchal, as planned, though I learned that the blood test portion isn't really relevant because they can't tell what percentage of the numbers are coming from which baby. Interesting.

The genetic counselor also asked if I knew the conception date. I told her yes, that it was an IVF pregnancy. She asked if I'd had "real IVF." Err, yes, it *seemed* fairly real at the time. She said that a lot of women come in and say they've had IVF, meaning IUI. Wow. I seriously can’t imagine having a medical procedure performed and not knowing the proper name of it.

In other news, we talked about my upcoming appt with the new peri and she said he likes to follow his IVF patients very closely. Which might translate into, I'm not going to Slovakia. We have a lot to talk about. It sounds like between the new peri and my maternal fetal medicine doctor, I'll be in every other week until 20 weeks, then weekly. Wowza.

The ultrasound portion was fabulous. The tech spent a lot of time on each baby (neither was cooperating). And maybe this is normal for the U.S. (if so, I’m insanely jealous), but they had a huge flat screen monitor on the wall, so it was very easy to see what she was measuring and all of the details. Another woman was training to be board certified in the nuchal scan, so she came in after the test and spent another 30 minutes practicing with the ultrasound and taking pictures. During some of the first round of photos, Baby A reached up and wiped his/ her hand across its forehead, as if to say, too many pictures. Kate did the same thing during her nuchal scan. So cute!

The nuchal number was normal for both babies. Full report to follow.

At 11 weeks:

Baby A: measuring 11 weeks 0 days, CRL 4.08cm, heart rate 176

Baby B: measuring 11 weeks 2 days, CRL 4.51cm, heart rate 171

I’m concerned about the difference in CRL, but the ultrasound tech said it wasn’t a big deal.

Follow up: Yesterday a woman from the hospital left a voicemail for me stating that she had the results, and gave me 45 minutes to call her back before she was to leave for the day. Unfortunately I didn’t get the message until really late last night. Why she didn’t call my cell phone is a mystery. Anyway, I called this morning and of course she’s out until Tuesday. The good news is that the results were faxed to my high-risk OB. One brief message and returned phone call (within 20 minutes), and though she hadn’t read the full report, said that everything looks “great.” Great, coming from her, will more than get me through the weekend. Thrilled.