Sunday, February 28, 2010

26 Weeks!

Today has two great milestones-I am officially 26 weeks and it is the last day of February. I look forward to turning over my calendar. The palliative care doctor met with us on Friday and commented that 26 weeks is a "respectable number." The closer we get to 30 weeks the further we get from the complications of extreme prematurity. Of course the ultimate issue of hypoplastic lungs will not go away with time, but my feeling is if her lungs are borderline she will have a much better chance if she is not dealing with many preemie issues as well.

This was a fairly uneventful week for Baby Girl. She kept up her routine of hiding from the nurses for several days straight but this weekend has been easy to find for heart rate checks. She had a non-stress test Friday that we were on the verge of failing but at the last minute she had a nice acceleration. I am REALLY hoping tomorrow's NST is a much easier experience. It is a non-stress test for her but full of plenty stress for me.

After a very annoying oral glucose test (involving 8 blood draws and many hematomas) I officially have gestational diabetes. Blech. It is really a challenge to find vegetarian options on the hospital menu that are in the right carb range. I told the attending doctor today that I was afraid I would have to start eating chicken and he said they would medicate me first to allow for greater carb consumption. Many chickens were relieved to hear that. So far it has been easily controlled with diet. Steve and I have been placing bets on each blood sugar level and making a game of it. We are eerily accurate. I was concerned about the daily glucose checks (4-5 a day currently) because they can only use my left hand for sticks. Luckily my fingers have not become sore though so hopefully it will not be an issue.

Annie continues to handle this change better than her parents. It does seem to be testing her patience, however. Tonight she had difficulty saying good-bye and kept saying "I just want you to come home." She also informed me that when I do come home I am making her lunch.

I have heard from many people that they have asked their parishes to pray for our little girl. It means a great deal to us that so many people are thinking of her and praying.

I am trying to face tomorrow with more optimism than I usually have for Mondays. I have decided to stop thinking about the big goal of 35 weeks and focus on getting to 28 weeks. We've already completed over two weeks in the hospital so another two weeks does not seem so overwhelming.

Right now I am enjoying the solitude of my room after 5 straight days with a roommate. Oh, the relative privacy!!!

Tuesday, February 23, 2010

Stable Mabel

Today we had another routine non-stress test. Baby Girl was showing off and had 3 nice long accelerations. She looked like a more mature baby. It is such a relief to have another successful test behind us.

The doctors on rounds were discussing me outside the door before coming in (not sure if they realize how much their voices carry). They told the new doctor on rotation that I was "Stable Mabel." I can't think of a happier description right now.

Anneliese enjoyed another wheelchair ride. As we returned to my room she said "Something's wrong with my belly....yeah...I'm gonna go to the hopital and get it better...I'm gonna stay in the hopital with you ever and ever and ever." There are not words for how much I miss her.

Today when I was struggling with being hospitalized I had a bit of an epiphany. I fully realized that each day here is not a burden-it is a gift. A day in the hospital is so much better than what the alternative would mean. This is my new mantra for when I want to sign myself out and run home.

Monday, February 22, 2010

25 Weeks

Yesterday we hit 25 weeks-another great milestone. The weekend was pretty uneventful although Baby Girl continues to make finding her heart beat a challenge for the nurses. I also enjoyed having the room to myself even if it was short lived. They are replacing some floors so space will be tight the next few weeks.

Today we had a routine u/s. Baby Girl is growing well and now weighs in at 1lb 10oz. In true Mellem fashion her head is a few days ahead of the rest of her. She may have a lifetime of trouble finding hats that fit. Unfortunately the u/s showed very little fluid but this did not come as a surprise. I constantly remind myself that each u/s is only a snapshot in time and her fluid levels most likely fluctuate. She did have fluid in her stomach which tells me she has had some fluid near her face to swallow.

The biggest excitement of the u/s is that Baby Girl is now head down. This means she is less vulnerable to a cord prolapse and I am now allowed out of bed for short bits of time. I can actually walk to the kitchen and get my own water! Being allowed more movement further reduces my chances of developing a blood clot. I am currently on two heparin shots a day to prevent DVTs but this added protection is beneficial. I was also cleared for one 20 minute wheelchair ride a day. Anneliese is thrilled by this and did not want the walk to end. As we were returning to the floor a little boy saw her on my lap and asked "did you just have her?" Can you imagine that delivery????

Mondays tend to be my hardest days. The excitement of hitting a new week gives way to the reality of getting through the next stretch. I am trying my best to focus on the present and not think too far ahead. This attitude adjustment is a work in progress and I am not always successful. As of right now I am glad that Monday is almost behind me and February will be over soon. The doctors on rounds today gave Baby Girl a little pep talk trying to convince her to stay in until April. Their main argument is that diamond is the best birthstone. Indeed!

Again thank you to everyone for your kind thoughts and prayers. It is all much appreciated!

Saturday, February 20, 2010

One Full Week!

I have now been an inpatient for a whole week. While each day has been long the week itself passed pretty quickly. A series of colorful roommates and daily dramas with Baby Girl have moved time along.

Thursday evening during her routine heart beat check she had a very obvious deceleration. I had never heard one before and it startled me. The low amniotic fluid level leaves her more vulnerable to compressing her cord. That causes her heart rate to drop and hopefully startles her enough to move positions and release the cord. It was scary but "normal" for a baby in our situation (this happens to all babies but with her it will be more frequent). Two hours later at her next heart rate check she has another very obvious decel. I thought my own heart would stop. Yes, they say it is normal, but to never hear a decel then suddenly getting them two times in a row is disconcerting. I am her mother-the idea of her blood supply being cut off, however temporary, will never sit well with me. Now the doctor comes in and while reassuring me also orders a non-stess test to get a visual of her heart rate. We are in a difficult situation. If the NST shows she is in great distress the only treatment option is delivery and delivery at this point would most likely be fatal.

Baby Girl passed the NST with flying colors and her parents were once again given some relief. We had our regularly scheduled NST Friday morning and that too went well. Her heart rate fluctuation looked so good they hung the print out on my bulletin board as a "report card."

In general she has been keeping them busy hunting her down for heart rate checks. It is not uncommon for it to take 20 minutes and two nurses to find her. One nurse suggested we pick a name that means "trouble maker."

The reality of inpatient life has set in. There is constant frustration with food service, constant interruptions day and night and the overall lack of control over my daily existence.

One of the biggest drawbacks is occasionally sharing my room. Realistically I know I can't be here alone the whole stay but boy do I fantasize about it. Roommates arrive with as little as 5 minutes warning and so far have always arrived with loud personal dramas. I love that our country has strict health care privacy laws but as an inpatient your "privacy" is only an ugly rose colored curtain. The way people carry on when I am in the same room confounds me. It also makes me appreciate my own sweet husband that much more.

Roommates mean having little control over my personal space. When insomnia hits at 3am I can't turn on the light to read or watch TV. When Annie visits I feel the constant pressure to keep her extra quiet and contained. I am also subjected to whatever visitors come along and there is no escape. Yesterday my roomie brought along three heavy smokers. The door was closed and it did not take long for the smell to become overwhelming, especially as people took turns with frequent smoke breaks. I am not supposed to leave my bed unless I am headed for the bathroom but the smell was nauseating. I finally broke down and went to the nurses station for fresh air and mercy. The nurses were very understanding and worked out a new room arrangement for my roommate.

I am hoping for a very uneventful weekend. Steve is coming for a solo visit and I am looking forward to time "alone." I miss my family constantly and several times a day have to convince myself all over again that we made the right choice being admitted so early.

Thank you again for all your kinds words of support. They mean much more than I can say!

Wednesday, February 17, 2010

Another day...

Things have been holding steady since I was admitted. I did have a low grade fever but it passed quickly.

The most exciting development for me was that the doctors decided to give me an IV holiday. Normally all pPROM patients are required to have an IV at all times in case an emergency C-section is needed. Unfortunately all my good veins are in my right arm, and RSD (a nerve condition I've been blessed with) leaves my right arm off limits. When I was admitted the IV team was able to place an IV in my left arm after several attempts but an IV can only stay in for about 4 days. If they keep replacing them and I have a lengthy stay all my veins will be shot. I have promised that at the first sign of a contraction or bleeding I will let them know so they can put one in immediately. I love it when doctors are reasonable. This makes my day to day living so much easier as I have limited use of my right hand and compromising my left hand with an IV just made things more difficult.

I also have a new room, complete with a view. I still have occasional roommates but they are all short term.

Baby Girl continues to make the nurses earn their money. Last night it took two people 20 minutes to find her heart beat with the doppler. I could feel her moving so I wasn't concerned. This morning she decided to hide again, but this time I had not felt movement in several hours and the wait was torture. This whole pregnancy has become a lesson in managing fear.

Sunday, February 14, 2010

24 Weeks!

I am 24 weeks today. This is a milestone that at one point seemed impossible. While we are nowhere near being out of the woods it is so gratifying to watch time pass.

My hospital stay has been uneventful thus far. My goal is to be the most boring patient I can be. I have received both doses of steroids to help with lung maturation and am also now on antibiotics to prevent infection. Depending on how far the pregnancy continues they may give me a second round of steroids down the road.

Tomorrow I should be moved to a room with a view. Well, at least a better view than the brick wall I currently stare at. With any luck I may be able to have the room to myself for a bit.

Baby Girl is doing well and has a very strong heartbeat. If I hadn't seen otherwise on u/s I would swear she has 16 elbows from all the pokes I get. Right now enjoying her movements is the highlight of my day. I really cherish this time with her.

Anneliese came for a visit today and turned the foot of my bed into a piano. We had many wonderful performances to watch. She seems to be adjusting to this new change fairly well, thank goodness. She actually thinks my room is "so beautiful" and loves the cafeteria food.

Saturday, February 13, 2010

Friday February 12th

Today I was admitted to the hospital for the duration of the pregnancy. Leaving Anneliese is going to be incredibly difficult but we are blessed with family and friends willing to lend a hand (a million thanks!!!). I keep reminding myself that toddlers are resilient and this will hopefully benefit her in the long run. Annie has great plans for "Baby Sister" and I am doing the best I can to make those plans become a reality. Luckily my parents are in town this weekend and the responsibility of captivating her grandparents means she barely registers my absence.

At the hospital it should be easier for me to stay on bed rest and the baby can be monitored frequently. Should an immediate concern arise there is an OR on the same floor and they can perform an emergency C-section quickly.

The highlight of tonight was the bedside u/s. The doctor took her time so we could enjoy watching our daughter. For a black and gray blur she is exceptionally beautiful. I have had very little leaking for a whole day so she actually has some fluid to move around in. This is so much nicer then the cramped u/s we usually see. The downside was what a hospital considers "rest." We arrived at 4PM and I did not have a real break until 10:30.


Baby Girl at 19 weeks 5 days
This was before the amnioinfusion. She had her hand to her mouth.

19 weeks 5 days
Following the amnioinfusion-she loved the new room from the fluid and became very active.

Baby Girl at 23 weeks 1 day
One leg is up over her head and she is sitting on the other. Both hands were on her feet playing with her toes. I imagine it gets pretty boring in there.

Thursday, February 11, 2010

Our Story

We learned we were pregnant in September 2009. This baby was much anticipated and hoped for, however previous pregnancy losses left us cautiously optimistic. The pregnancy had a relatively smooth start. The only abnormal findings were a vanishing twin and an elevated NT measurement at 11 weeks. Follow up blood work gave us an increased risk of Downs Syndrome but we decided against amniocentesis. The results would not change the course of the pregnancy and neither of us were willing to risk another miscarriage.

At 15 weeks I awoke thinking that I was leaking amniotic fluid. We went to the hospital in a panic but all the testing back normal. To further ease my mind they did a bedside ultrasound and the baby had normal fluid levels. We left feeling confident.

Around 18 and a half weeks I began to worry that my stomach was growing smaller. It is hard for me to know when I am being paranoid or when I should actually be concerned. At a routine prenatal visit I mentioned my concerns to the doctor (not my normal OB) and he assured me it was normal for the stomach size to fluctuate. Even when my fundal height was lower than expected he continued to say all was well. My anatomical u/s was in 2 weeks and he recommended waiting until then. I was uneasy with this and talked to my regular OB the next day. She arranged for me to get an u/s that afternoon.

This is where our hopes for a healthy pregnancy fell apart. I had a very long u/s with a stone faced tech. I only glanced at the screen two times. I am not an expert but I knew there was not nearly enough fluid surrounding the baby. She finally left me to go over the results with the radiologist. The doctor came in carrying tissues-never a reassuring sign. She explained that the fluid was extremely low but at this point they do not know why. I was sent to my OB to go over the u/s results.

Stephen met me and we went in to meet my OB. I was checked again for leaking amniotic fluid but the testing was normal. She was at a loss for a diagnosis and suggested it could be poor kidney function (amniotic fluid is actually baby urine). We were ushered over to meet with the perinatologist. He was able to establish that the baby does have kidneys and that there was fluid in both the bladder and the stomach. He felt that it was probably a placental insufficiency and the baby was shunting blood away from less critical organs (ie kidneys) to keep the brain, heart and adrenal glands healthy. He was clear that this pregnancy was nonviable and offered us the option of terminating. I knew in my heart that was not something I am capable of doing. We were not given any options to help diagnosis the problem. He said that regardless of the issue there was nothing we could do to fix it so further testing was pointless.

We went home broken hearted with no advice on how to proceed. The doctors said bed rest and increased fluid would do nothing to help. Despite that we tried anyway. I spent the next week on my left side and drinking as much water as I could tolerate.

We also decided to get a second opinion. I thought the perinatology group at Strong Memorial may have a different point of view. One week after the original u/s we met with a perinatologist at Strong. She was blunt and told us that the fluid levels had dropped even lower this week and were no longer high enough to support lung development (babies inhale amniotic fluid for practice breathing-this is crucial for lung development). Without fluid our baby could still continue to grow normally but once born would not have viable lungs and would die. Testing on the placenta looked normal and the kidneys were clearly filling the bladder. She offered us the option of amnioinfusion to make a definitive diagnosis. They inserted a needle just as during an amniocentesis but rather than withdrawing fluid they fill the uterus with blue fluid. If there was a leak in the amniotic sac the blue dye would make it very obvious. During the amnioinfusion they also withdrew a small amount of fluid for chromosome testing as the u/s showed several soft markers that could indicate genetic problems. This is how we learned we are expecting another daughter (with normal chromosomes!).

The amnioinfusion did its job-I was clearly leaking fluid and had suffered from preterm premature rupture of membranes (pPROM).

I assumed this was the end of the road and we would simply continue the pregnancy until labor or infection forced us to act.

Still looking for some promise of hope I spent hours researching online. I found many research articles that were very gloom and doom. However I also found a story of a woman much like me and her baby boy survived. This lead me to the pPROM website and more stories of successful outcomes with pPROM and low amniotic fluid.

Armed with this knowledge I went into our next u/s with a little sliver of optimism. Again there was very little fluid, but our daughter was still growing on track and her heart beat was strong. The doctor agreed that survival was not impossible and she was willing to follow our pregnancy if we wished to continue. The obstacles ahead were made very clear. I am at risk for developing an infection at any time. If I do they will have no choice but to deliver regardless of how far we are in the pregnancy. I am also at risk of going into labor at any time. If I do they will not stop contractions as they can be a sign of infection and the risk to me is too great. Beyond those risks, there is no way to know if our little girl is getting enough fluid to develop her lungs. We will not know until she is actually delivered. Ultimately we can make to all the way to 35 weeks only to discover her lungs are not compatible with life. That uncertainty is the hardest thing to accept and live with.

We decided to start this blog so that we have an easy way to get updates to loved ones and also for other women experiencing pPROM and looking for help. I have benefited from other women sharing their stories and would like to return the favor.