Thursday, March 29, 2012

A Good Anniversary to Forget - Part II


The day before his surgery (March 23, 2010), we went to the hospital for pre-op procedures. Jacob and I were taken to the Cardiac Intensive Care Unit (CICU) where Jack would recover and saw the babies there, with their many machines. It was impossible though to envision our healthy, big baby in this setting; these babies looked so small and sick. The most helpful part of this day was sitting with Jack's cardiologist and looking at Jack's heart on the ultrasound machine together. The thick muscle bands were so obvious (even for me, someone who has a hard time making sense of anything on an ultrasound) that it helped to be able to SEE the problem and know that this surgery was going to hopefully fix it.

We had to be at the hospital at 6:00 am, and Jack wasn't supposed to eat after 3:00 am. I set my alarm so that I could nurse him right before 3:00. It was a sweet moment; I was pretty calm that morning and able to just look at him and love him and feel at peace. I clearly remember putting him in our bed next to Jacob so I could go ahead and get ready and just looking at them together, sleeping sweetly. I hope I always keep that memory.

My parents and Jacob's mom were with us for a while and then went to the waiting room while we waited for it to be time for Jack to go to surgery. We met one of the two surgeons for the first time to sign some papers and go over the procedure and I think it made us both feel reassured. At around 8:00, we went down to the surgery holding area with Jack. We were both still calm. Two nurses came to get Jack from me and we managed to keep it together even as we kissed him and they took him. But then as we walked out of the holding area, panic hit and it felt so insane to have just let someone take my baby away. We pulled it together and went to sit with our parents in the waiting room. Jacob suggested we go get something to eat in the cafeteria so we headed that way. As we were walking, we passed the other surgeon, whose nurse gestured toward us as the parents of Jack. He nodded curtly and kept walking and that about did me in. My reassurance went away and I got so scared again that my baby was with people I didn't know. Jacob calmed me down and the rest of the waiting time was fairly calm/mundane.

Jack underwent open-heart surgery. This meant he was put on a heart-lung machine for the duration of the surgery. The surgeons' goal was to close his VSD with a patch and remove the muscle bands in his right ventricle. It ended up taking about 6.5 hours. There were two complications. First, Jack must have inherited my veins bc the doctors couldn't get an IV in his groin and so ended up having to go in his neck. (He had massive bruises on his inner thighs for months afterward as a result of their efforts.) Second, the surgeons thought they had finished and were about to close up, when the cardiologist did an echo (standard procedure) to examine the work. At that point, a second VSD was noticed and so the surgeons went back in to close it as well. Jack did great throughout the surgery.

It took an additional hour for him to be moved over to the CICU. We waited anxiously to see him. We had been prepped for how he would look but when Jacob and I finally were brought in, it was like being punched in the stomach. My eyes scanned the room and then all the sudden landed on my baby, but looking not AT ALL like him. Post open-heart surgery, patients are kept on a paralytic for several days to allow their bodies to heal; this means they need to be on a ventilator, so Jack was stretched out on the bed, not moving, with a machine breathing for him. He had three tubes coming from his chest draining blood from the surgery, a catheter in, and many lines going into the central IV in his neck. He also had wires in his chest in case the doctors needed to use them as a pacemaker. He was puffy from the fluids given during surgery. There were lots of machines around tracking his vitals. I clearly remember his heart rate was teetering around 200 (normal being 120-140). We have pictures of these early days but they still horrify us a little and we've never wanted to post them.

The initial shock quickly wore off and we spent the next several days just holding his hand and talking to him. We were able to sleep at the hospital so we were never far and I got to have frequent visits day and night as I was pumping breastmilk every 3 hours to keep up my supply while Jack couldn't eat. The CICU was closed for 2 hours each morning and night and we used the evening time to go home, eat dinner, and shower. By the second night, it started to feel really old seeing Jack paralyzed and hooked to so many machines; the happiness of the surgery's success was starting to wane and I just missed my baby. I didn't like being in our house without him.

Jack did excellently post-surgery and was a textbook recovery case. The doctors started to wean his paralytic 2 days post-surgery and we slowly watched him "wake up." This was a mixed bag as with consciousness came an awareness of pain and unfamiliar settings. The nurses actually tethered his wrists to his bed so he wouldn't be able to dislodge any tubes or lines. One of the hardest parts of the hospital stay was seeing him awake but still on the ventilator. He would periodically need his throat suctioned to remove secretions, which meant disconnecting the ventilator and nurses manually doing this. It was obviously stressful and scary for him not to be able to breathe and he would get agitated and start to cry. With the ventilator in he wasn't able to make any noise, so all he could do was silently shed tears which Absolutely Broke My Heart - Repeatedly. We would do our best to calm him down afterward.

Thankfully, by the next day he was able to be extubated and to just have a nasal oxygen cannula. He had to wait 24 hours before he could be fed and as the day waned, he became increasingly upset as I'm sure he was hungry. This was also pitiful to watch bc his voice was weak and he could only cry hoarsely. I also felt useless as my presence seemed to make matters worse since I was nursing him and seeing me only frustrated him as I wasn't offering food like I normally did.

Jack's first hospital bed - day 4

Once he was awake and crying, he got moved into a more secluded part of the CICU

On day 5, he was able to eat again, but only through a bottle since he still was connected to so many things. Jacob gave him pumped milk in a bottle which worked for the first feeding but then we gradually had to resort to a medicine dropper over the day because he was upset and not wanting to take the bottle.

At this point, he was also being weaned on his pain medications and I think he was just agitated in general as he had more pain and was dealing with some withdrawal. I was given the chance to hold him at one point which was momentarily wonderful as he did calm down but he had so many wires coming out of him that the process of getting him back in the bed (helped by multiple nurses) put him in pain and upset him and I ended up wondering if it had been worth it.

Finally on day 6, enough lines were removed that I was able to hold him more easily and was able to nurse him again - which, thank God, he took right back to! This day he experienced a good bit of withdrawal from the pain medications and some awful bloating; it was really pitiful to see him like this and not be able to make things better.

On day 7, he was discharged from the CICU to a regular room in the hospital and the next day, after a "looks great" heart echo, we were sent home.

The next few weeks were difficult as Jack seemed detached, probably from the incredibly jolting experience in an otherwise happy life, and was dealing with physical pain. He had two daily medicines he took for about a month and we couldn't pick him up under his arms for 3 months. He saw his cardiologist a week out and looked so good they said they didn't need to see him for 6 more weeks. At that appointment in May, his heart looked just as healthy as any fully formed heart and we were told we didn't need to come back for 6 MONTHS!

This was huge news bc at that point, Jack himself wasn't even 6 months old. His heart defect and surgery had defined his first 6 months of life and all the sudden we found ourselves in the clear. This end result has only gotten better - the 6 month check-up led to a "we don't need to see you for a year" and that checkup led to "we don't need to see you for TWO YEARS!" (we'll go back right before Jack's 4th birthday). Jack's heart is fully repaired and there is an extremely low likelihood that he would ever have any issues in the future. He can do anything any other child can do and the only lasting reminder of the surgery are the scars on his sweet chest (which, see picture evidence below, have GREATLY diminished with time.)

A little over a week post surgery

1 year post surgery

2 years post-surgery

So it was incredibly refreshing to be able to forget the surgery anniversary after having Jack's heart be the focal point for the first 25% of his life. He is now such a healthy, active, inquisitive, charming little boy that it's easy to forget he ever had any health challenges. WHAT A BLESSING - we are so thankful to God for the medical advances that have given our little boy a normal life in a healthy body!

Wednesday, March 28, 2012

2 years post surgery

A Good Anniversary to Forget - Part I

(disclaimer: I can't talk about this topic and be brief!!)

Many of you know Jack had open heart surgery when he was a baby. The two year anniversary of his surgery was last weekend, but it passed unnoticed at our house. I realized it a few days later and it's had me doing some reflecting.

We didn't know about Jack's heart defect when he was born. There was nothing abnormal detected in his ultrasounds and when that big 8 lb, 10 oz baby came out, he seemed the picture of health. (I have to say I even wanted to pat myself on the back when he got a 9 and 10 on his Apgar scores at birth, as in I may not have done it at all gracefully, but I did just birth a healthy baby!)

The next morning, the pediatrician visited while I was taking a shower. Jacob said she heard a murmur when listening to his heart, that it was probably nothing serious, but they'd like to do a heart echo (ultrasound) to make sure. I took his recount at face value and we continued to celebrate our healthy baby. But then the doctor came back that afternoon and I could tell from her face when she walked in that we were about to get unsettling news. In a kind twist of fate, her own son had been born with a similar heart defect, so she had a lot of empathy as she told us that Jack had a medium sized hole in between his ventricles (Ventricular Septal Defect). Even with just the initial ultrasound, she warned that while many VSDs close on their own, the placement and size of Jack's made him a likely candidate for needing it closed surgically. I remember looking over at Jack and feeling so sad all of the sudden (such a shift from the emotions of the previous 24 hrs). He was so small and helpless and I felt sad and even guilty that he hadn't been born fully healthy. I also was scared. I knew nothing about heart defects and it just seemed so frightening to think of his little heart not being formed right. How was this going to affect him?

The pediatrician set us up with a cardiologist visit a few days later and had us come into the pediatrician's office weekly for Jack's first month. We quickly became educated and learned that Jack would be closely monitored to see how the VSD affected him as his lungs and heart started to work together in his first weeks of life. They would be most interested in his ability to gain weight - i.e. would the "exercise" of both eating and breathing tire him out?

After a scare at the one week mark (a night in the ER and at the Children's Hospital bc of Jack's really rapid breathing rate), we were thrilled to watch Jack turn into a very chunky baby. After a month of being seen frequently by the pediatrician and the cardiologist, everyone seemed to breathe easier and feel like Jack was doing excellently and not showing any adverse signs of his VSD. As long as he was doing well, the doctors would give his heart time to see if it could heal on its own.

It was this mindset that we went in to a check-up with the cardiologist when Jack was 2.5 months old. We were so in love with this precious child and were starting to feel really good about his health. At his cardiologist visits, he would have a heart echo done, vital signs taken, and then the doctor would review the ultrasound and then come and chat with us. We took this picture while we were waiting.

And then WHAM, when the cardiologist came in, he explained that in Jack's first ultrasound, some slight muscle growth had been noticed in his right ventricle (we knew about this, but the amount of it was not something we were told should be concerning). At this ultrasound, a dramatic growth in the muscle was seen, nearly dividing Jack's right ventricle into two chambers (leaving him with a "double chambered right ventricle".) This muscle was growing because of the inefficient way Jack's heart was pumping bc of his VSD. The cardiologist felt like surgery was necessary and probably needed soon, but he wanted to confer with the surgeons in his practice.

I made it to the car before the tears came. It was news that felt like it came out of nowhere;we had been told all along that Jack's VSD would most likely not close on its own and would need to be closed surgically, but he had just seemed SO healthy and everyone had been so positive in the last month that we were just not expecting to leave that appointment with surgery on the horizon.

A few days later we got confirmation that the cardiology group was in consensus that Jack needed surgery and that it should happen within the next month. The nurse got on the phone with me to schedule the surgery and to walk me through what to expect. I quietly cried through the call as everything she described just seemed so foreign and scary.

It was about 3 weeks between learning about the surgery and the actual day, which allowed us to prepare for the experience, both logistically, spiritually, and mentally. So many families that have to go through scary health experiences don't get that luxury and we realized we were lucky. My parents flew down to take care of us so we could take care of Jack. Jacob's mom made plans to be in town. Jack's surgery was to be at Children's Hospital, only 10 minutes from our house, and they were excellent in providing information in advance.

At times I felt calm and at peace, but a lot of other times I felt incredibly scared. I couldn't imagine handing my child over to a team of people I didn't know and literally trusting them with his life. It hurt me to know that Jack would hurt through this experience. And it was all just so unknown, it was hard to wrap my mind around it.

to be continued...

Sunday, March 25, 2012

27 weeks

27 weeks pregnant (3/25/12)

Because what I really want to say is:

This pregnancy is hard! How can it be possible that I was exactly 3 months from my due date this week?! My belly is so big, how can I have 3 more months? My back feels like it is broken. My abdomen is sore and I have shooting pains. It hurts to walk, stand, sit, and lay down in most positions. And I've now been having daily contractions for a month!

I'm actually going to make myself respond to this question: What do I like about being pregnant?

I like feeling baby Cora move even though even after multiple ultrasounds I still have no clue what body parts I'm feeling. I like the anticipation of her arrival and imagining what she'll look like and how it will feel to have a baby again. I like imagining what it will be like when Jack meets her and how their relationship will grow over the years. I like thinking about my maternity leave and the simpler life we'll be able to lead when I won't have as many competing priorities.

In hindsight
, Jack's pregnancy was definitely easy compared to this one + I think your subsequent pregnancies will always seem a little harder bc you don't have as much freedom and flexibility to rest and relax when you are tired or not feeling well. I think this week will be easier bc the backache did start to ease today, so here's hoping the next 3 months won't feel like the last 3 days!

Week Twenty-Seven Stats:

Weight Gain: 15 lbs

Baby Size: I got the slightly frightening insight that Cora continues to measure big - (based on her ultrasound she was 2.5 weeks further along than my due date; but she can't actually be, so it means she's just big.) The ultrasound calculated her weight as 2 lbs 13 oz, making her in the 97th percentile of babies at this gestational age. So it looks like she got the Owen height genes like her brother!

Contractions Update: I met with the different fetal medicine specialist and he affirmed what I think is common sense at this point - since it's been 4 weeks and there has been no change in my cervix, I shouldn't be overly concerned about the contractions bc we have clear evidence they aren't actually doing anything (except bothering me!)

My healthy pregnancy intentions for last week (how I did):

1) Do all four of my Bradley exercises at least 2 days. Right now I'm only doing the pelvic tilts. Yes!

2) Cook 4 healthy meals. No, it really was a hard week with a lot of pain, so I just cooked twice early in the week and then we did take out.

3) Attend 1 day of the La Leche League Gold Standard conference here in New Orleans as I pursue accreditation as a LLL leader and prepare to breastfeed another baby. Yes! I'm hoping to actually be accredited by the time Cora is born, so I'm going to try to complete the remaining steps in the next month or so.

My healthy pregnancy intentions for this week:

1) Start reading Natural Childbirth the Bradley Way to get a refresher on what we learned the first go-round

2) Do all 4 Bradley exercises three days this week

3) Get my glucose screening and my shot of Rhogam since I'm RH-negative

Saturday, March 17, 2012

26 weeks

26 weeks pregnant (3/17/12)

So baby girl is baby Cora :) I've liked this name all along and Jack and I've been calling my belly "baby Cora" since pretty early on. Jacob wanted to wait till we knew whether we were having a girl or boy to talk about names. We then knew she would be Hana (our girl name for Jack) or Cora and we gave it a few weeks to marinate. During this time, Jack, who has inherited his dad's joking gene, would alternately call the baby Hana or Cora and laugh bc he knew it was funny to be indecisive. He would also say "we have to pick one name" echoing what we were saying.

The idea for Cora came from seeing an uptown street named Coralie back a year or so ago. Coralie was a little too different for me, but it gave me the idea of Cora and I like how it's a little old fashioned, which, to me, makes it timeless and classy. And I love how Jack says it: "Baby Co-wa."

Middle name TBD, though we have some ideas.

I've still been having contractions, but possibly a little bit less (though I don't want to jinx myself). I saw my midwife on Tuesday and there was no change or dilation so the contractions are continuing NOT to cause labor. I'll see her again next week along with a follow-up visit to a new fetal medicine specialist.

Week Twenty-Six Stats:

How I know I'm pregnant: this week brought together several discomforts making me feel very pregnant and a little overwhelmed that I'm not due for 3 more months. I definitely want her to stay in until June, but I'm starting to get worried about how pregnant in May and June is going to feel in New Orleans!

My healthy pregnancy intentions for last week
(how I did):

1) Continue to make conscious effort not to overdo it (yes - to the point that I was getting a little stir crazy at times)

2) Go to bed before 10 since I'm having trouble sleeping (yes - am now noticing a few contractions in the night + backache + full bladder = interrupted sleep)

3) Let my parents spoil me/us during their visit next weekend and take advantage of some extra couch time :) (Yes! We are having a great visit. We went out to dinner on Friday night, to the zoo on Saturday, Jacob and I went out on a nice date Saturday night, and we went to church/brunch today. Jack is having a blast and I've not done any baths, minimal lifting, no cooking, etc.)

My healthy pregnancy intentions for this week:

1) Do all four of my Bradley exercises at least 2 days. Right now I'm only doing the pelvic tilts.

2) Cook 4 healthy meals.

3) Attend 1 day of the La Leche League Gold Standard conference here in New Orleans as I pursue accreditation as a LLL leader and prepare to breastfeed another baby.

Some pictures from this weekend:

Jacob and me after a fabulous date at Sweet Olive

Updated Landry family photo in front of the new house

Jack with his Big Papa and Grammy

Saturday, March 10, 2012

25 weeks

25 weeks pregnant (3/10/12)

Well I didn't get my wish that these contractions would just go away. I thought they were fading away last weekend, but they picked right back up Monday. They definitely are more frequent at some points in the day (though not necessarily at any consistent time of day) coming 5-7 an hour, but most of the time I just have about 2-4 an hour. There have been a few that have been a little painful, but mostly they are just uncomfortable.

I saw a fetal medicine specialist on Monday but she didn't offer any insight as to why I was having them. My cervix is still closed so they are not causing me to go into labor. I met with my midwife on Tuesday and mapped out a plan that I feel good about. I'm going to be checked weekly by them, rather than their covering doctor (since I'm not going into labor, I'm not high risk, just need to have closer surveillance to make sure things don't change.) I'm also going to switch to seeing a different fetal medicine specialist that is less interventionist (the other one wanted me to come in weekly and start medicine right away.) This new doctor didn't have an opening until next week, but I feel fine with that.

I'm definitely making an effort to take it easier. It's hard to say if that helps with the contractions since I honestly feel them the most when I am sitting/laying down. Jacob continues to be really helpful and supportive, which makes things a lot easier with caring for Jack. I still feel unsure what to expect, but without a crystal ball, I guess we just take it one day at a time and watch for any changes in the frequency/intensity of contractions.

Comparison Pics

25 weeks pregnant with Jack

25 weeks pregnant with baby girl

It's official - I am bigger this go-round as this shirt wasn't really covering my belly today and I was wearing it a while past this point last time.

Week Twenty-Five Stats:

How I know I'm pregnant: obviously the contractions, the large belly, and the increasing feeling of fatigue/heft, where I notice the extra weight (person) I'm carrying around

My healthy pregnancy intentions for last week
(how I did):

1) Continue to monitor how I'm feeling and how many contractions I'm having; I know what to watch for, so I just want to be aware (yes, still writing them down)

2) Gradually get back to my normal routines but pay attention to how my body is responding (yep, plan to take same approach this week)

3) Not disregard my need to feel comfortable with my doctors and bring this up at my midwife appointment on Tuesday (had this conversation, which went well, and had Jacob there to make sure I covered everything)

My healthy pregnancy intentions for this week:

1) Continue to make conscious effort not to overdo it

2) Go to bed before 10 since I'm having trouble sleeping

3) Let my parents spoil me/us during their visit next weekend and take advantage of some extra couch time :)

Sunday, March 04, 2012

24 weeks

24 weeks pregnant (3-4-12)

Well this week wasn't expected. Those contractions I mentioned casually last week? They had been coming pretty infrequently, resulting in the occasional "Jake, I think I just had a contraction." Well then last Sunday, that happened about 4 times in 30 minutes, so I laid down to see if they'd stop and they didn't. So, feeling silly, I called my midwife who said if they didn't stop soon to come in to the hospital. That left me feeling a mix of silly and nervous, so I laid down drinking water and I felt like my abdomen was pretty much staying tight. I was no longer sure what I was feeling, but when it wouldn't go away, Jacob and I decided we should err on the cautious side and go to the hospital.

So the two of us + Jack traipse over to Touro in the rain. I was put on the monitor and since I was indeed having contractions, the situation started to feel more serious since I was only 23 weeks. My midwife (who was there) turned me over to their covering physician and my cervix was checked (not dilating) and some tests were run to see if I had an infection and whether my body was showing signs that I would deliver soon. It took a while for the test results to come back, so I ended up sending Jacob home with Jack. Around midnight, I found out the tests all came back clear, but that the covering doctor wanted to keep me overnight for observation. A resident did an ultrasound to check the baby's size since they have a policy of not resuscitating babies less than 500 g (baby girl was 700+ grams). Throughout all this, I had the feeling that everything was going to be okay and was feeling calm. I finally got admitted at 1:00 a.m. and they kept me till the next afternoon.

I was sent home on bedrest with a checkup for Friday. I had mixed feelings about whether this was serious or not but felt like that I just had to wait and see. I ended up taking it easy all week, but still went in to a few meetings for work, worked from home, and obviously wasn't on bedrest the whole week because I have a 2 year old. Jacob was great though and took Jack to school every morning, came home early, and really did most of the Jack care so I wasn't having to pick him up.

Tuesday and Wednesday were a little unnerving because I continued to have pretty continuous contractions and what I'm calling "tightening" in my abdomen throughout the day. Thursday - Sunday has showed a decrease in these. I also went in to the covering doctor on Friday and still show no signs of dilation which means that these contractions are not causing me to go into labor, so they may just be something that I will experience with no adverse effect. I was referred to a maternal fetal medicine specialist next week just to delve a little deeper since no cause for the contractions has been determined.

The hard part about this week has just been the mental exhaustion of trying to figure out if this is serious or not. I definitely am hearing that some women do experience contractions and that they go full term; I'm also hearing that you never know and that these contractions may not be causing me to go into labor now, but they might ultimately. I'm hoping they stop completely so that I can feel more confident that everything is fine.

The other hard part is that I chose to go to the midwifery practice because I believe pregnancy is a natural condition, not an illness to be treated. To all the sudden be seeing a doctor I did not choose and do not know is disconcerting because I don't know if our philosophies line up. Assuming the contractions continue to lessen, I plan to see if I can just do my follow-up with the midwifery practice since they can do the checks just as easily as a doctor could and I know that we both see pregnancy in the same light.

I am thankful that nothing bad happened this week and feel pretty confident everything is going to be fine with this pregnancy. For this next week, I want to:

1) Continue to monitor how I'm feeling and how many contractions I'm having; I know what to watch for, so I just want to be aware

2) Gradually get back to my normal routines but pay attention to how my body is responding

3) Not disregard my need to feel comfortable with my doctors and bring this up at my midwife appointment on Tuesday

Lastly, if you are looking for a meaningful charity to support, please consider donating to the March of Dimes, whose mission is to reduce the prevalence of prematurity and birth defects. We were already fundraising over here, but this last week has made this feel more important!