Friday, April 30, 2010

Quick Update

Natalie continues to do well on the oscillating vent and NO. They are slowly weaning the NO down and she has been tolerating that well. Today she was given something similar to a PICC line so that she won't need constant IV changes. Placing the line was a long process and she needed to go up in her oxygen requirements from stress.

Thank you so very much for your continued support!

Wednesday, April 28, 2010

NICU Updates

I am way past tired so please forgive me for not proofreading. I hope this makes some sense.

Yesterday was "very eventful" for Natalie. We received a call from her doctor in the morning letting us know she had experienced some acute breathing issues in the early morning and they had to escalate her care. By the time we arrived at the hospital they were maximizing her respiratory support. This is incredibly frightening as there is no where else to go when things are already at their highest settings. The rest of the day was spent trying to hold on and get Natalie stabilized. She was put on an oscillating ventilator in the morning when the conventional vent failed to work for her. They also started her on inhaled nitric oxide (NO). The NO is what seemed to make the biggest difference and she showed a great response. When the doctor came to tell me her oxygen requirements first came down after the NO we stood in the hallway hugging. It is so comforting to have doctors emotionally invested in the care of your child.

The doctor met with us last night and offered her assurance that she felt this was something Natalie could pull through. They feel that the PDA (now closed), ibuprofen and immature hypoplastic lungs all became too much for her to take on at once. The oscillating vent and NO seem to be just what she needs right now. The NO dilates the blood vessels in her lungs and makes them less "twitchy." The oscillating vent takes about 700 breaths a minute for her and keeps her lungs open gently.

Yesterday four people attempted multiple times to place an arterial line. Thankfully one is now in place so they can monitor her blood gases more accurately and sample her blood without multiple sticks. She is also sedated to allow her body time to rest and let the vent do its job.

Since last night she continues to improve and is now at 33% oxygen (down from 100% yesterday) and they have slowly started to wean her from the NO. They plan to move very slowly and gently from this point. Our hope is that she has a great time of stability so that her lungs will grow and produce more normal alveoli.

We saw Natalie this evening and she is as beautiful as ever. We only looked briefly as lifting the quilt to her incubator can be agitating for her and she needs as much peace and calm as possible.

We ask for your continued prayers for Natalie's health and for our family to have the strength to face the battles of the NICU. Yesterday as we finally made it to bed we both looked at one another and the consensus was "worst day of our lives." Life in the NICU can mean being thrown from one extreme emotion to another and it is more challenging than we thought possible.

Last night I reminded myself of all the things I have to be grateful for. The love and support of our family, the radiance of Anneliese, the strength of my marriage and the tenacity of Natalie. We have so much to hold onto right now and that makes all the difference.

Again, I will try to update as much as possible. Right now I am trying my best to regroup physically and spend as much of my awake time at home with Anneliese. We are enjoying being back together at home and she has been my constant companion. I will leave you with the song she made up for me the first night I was home. "I hugged you and you hugged me....we're together and I loooove you."

Monday, April 26, 2010

B Positive

I am sorry for the lack of updates. I came home last night and the past few days have proven to be challenging. Who knew recovering from a C-section, looking after a toddler and having a child in intensive care would be so stressful? Ha.

I will be brief but want to let you know how Natalie is. Over the past few days her oxygen requirements have been creeping up. She is still on the vent and now at 60% oxygen. Her chest X-rays have also been progressively showing more fluid in her lungs. The hope was that this was all due to the PDA and would resolve when it closed. The echocardiogram this morning showed that the PDA is closed, so we are very much hoping that the fluid and breathing improves and the PDA was responsible. Immature lungs or hypoplastic lungs (from the low amniotic fluid) could also be behind this and those issues are much more complicated to resolve. She is still breathing very rapidly and we are also hoping that improves soon as well.

She had her first dose of Lasix today to help pull the fluid out of her lungs. She will have one dose a day for three days. Lasix can be stressful on the kidneys and cause electrolyte imbalances so she will be closely monitored for any issues. She also had her first blood transfusion today. Her blood type is B positive-a very good omen in my opinion!

Today was the greatest milestone so far. Her nurse allowed me to hold her for the first time. It was a production that required 3 nurses to pull off but it was AMAZING. It was as if a missing piece of me had been returned. Natalie was stressed during the transition but quickly settled in and was quite content. She had a hard time settling down when returned to her isolette. I think after having a taste of the good life snuggling with Mommy she did not want to return to her bed.

Please keep Natalie in your thoughts and prayers. We are hoping so much for some improvements in the next few days. She is such a beautiful and strong girl. Thank you again for all your support. We need it now more than ever.

Thursday, April 22, 2010

Day 2

Natalie did very well her first day in the NICU. Every neonatologist we saw was grinning and clearly thrilled with her. She is not the baby they had been warned about for months. Over the course of the day and into the night her vent settings were lowered. When we said goodnight the doctor said he expected her to be off the vent and onto C-PAP (a lower level of breathing assistance) by the next day. At 4 am we received word that she had been taken off the vent and was doing very well. It was an incredible feeling of success.

As we had been warned, the NICU is more of a roller coaster than a straight line of progress. This morning her oxygen levels had to be continually raised and chest X-ray showed that her lungs were hazy and not as inflated as the day before. The doctors decided to try another dose of surfactant so she was intubated again. They left the breathing tube in and put her on the vent to watch her progress. The surfactant helped some, but was not the solution we were looking for.

This afternoon she had an echocardiogram and a large PDA (patent ductus arteriosus)was found. PDA occurs when the connecting blood vessel between the pulmonary artery and the aorta in fetal circulation, called the ductus arteriosus, stays open in a newborn baby. For a preemie this can cause respiratory stress and make distributing oxygen difficult. The cardiologist said her PDA is so large that it is the same diameter as her aorta. It is very likely that this is the source of her respiratory distress. I many ways this is a relief to me as a PDA is a clear cut diagnosis and there are well established treatment plans.

She will receive her first dose of indomethacin tonight in hope of closing the PDA. There are three doses given 12 hours apart in each round. If the first round fails to close it adequately she will receive one more round. If that too fails she will need surgery. The doctor feels one way or another the issue should be resolved by the end of the weekend.

While she is on the indomethacin feeding her is out of the question. She is still receiving her nutrition intravenously through TPN. I am really hoping to have her stabilized soon so she can start getting milk.

The neonatologist explained that she is more complicated to treat and diagnose because to some extent her lungs are still an unknown. She does feel confident, though, that we will primarily be dealing with complications from prematurity and that her lungs are much better than anticipated.

We are amazed by our little girl and falling more and more in love. She is so strong and has endured her medical interventions incredibly well. I am in awe of her. It is such a struggle to be down the hall and away from her. I still find myself rubbing my belly (now more of a defated dough ball) and waiting to feel her kicks.

The reality of having a baby in the NICU is settling in. My overriding emotion is sheer gratitude that she is here and doing so well. Countless times a day I am struck all over again that she is born, she is breathing and she is ours to keep. At the same time, seeing your daughter need this degree of medical assistance is difficult and I long for the day I can actually hold her and care for her on my own. I am eager to finally put aside some of the constant worry that has been with us for months and not have so many medical uncertainties to face everyday. We have already overcome great odds to get this far and I am confident that we will get through this time as well.

I myself am dealing with a new level of fatigue. Coming off from 15 weeks of bed rest, recovering from the C-section and anemia from the abruption and surgery (my uterus would not contract so I had additional blood loss) is taking it's toll on me. I have hopes of focusing on rest, pumping and Natalie for the remainder of my stay. I need to build up some endurance for returning home.

I have so much more to say about our remarkable little girl but I suppose I need to start committing to more rest now. Thank you all for your continued support. Being with Natalie feels like witnessing a miracle and while it is a challenging time these are also euphoric days. I am so happy to share her story with you.

Wednesday, April 21, 2010

A Sweet Miracle Girl

I do not have the clarity to really write but I don't want to leave people hanging. Ms. Natalie is still doing well in the NICU. She is remains on a vent and is breathing room air. She has also had several blood gases and they are "beautiful." The next two days are a critical time and should be a good indicator of how she will do. So far she is exceeding everyone's expectations!

We are both in such a wonderful state of joyful shock. Thank you so much for your thoughts and prayers. Please keep them coming as Natalie begins her NICU journey. I promise to keep updates coming and will hopefully be able to share her birth story soon.

Natalie Evelyn Teegarden

Natalie Evelyn was born April 21, 2010n at 9:17am weighing 4lbs 4 oz. She cried!!!!
She is in the NICU on a vent but only on a room air setting. Everyone says she is darling.

The next 72 hours will tell us a lot about her pulmonary function but so far she is doing really well.

I will update as I can. Thank you all so much for your love and support. Please keep Natalie in your prayers as she adjusts to life on the outside.

Friday, April 16, 2010

33 Weeks

Things have returned to a relatively boring state. I am constantly in awe of how my status can fluctuate so quickly. On Thursday it really felt as though we had reached a turning point. Now we are back to no bleeding, very few contractions and Baby Girl has been passing her NSTs with flying colors. I am so grateful to be able to say all of that.

Now that delivery is set (April 26th) the mood here has changed a bit. In many ways I am relieved. Originally the plan was to deliver me at 35 weeks. I was not at all comfortable with that. To me that is an extra week of sitting here waiting for infection or cord compression when that week does not offer substantial benefits to the baby. The NICU doctor and maternal fetal specialist agreed, especially considering that the pregnancy has not exactly been calm lately. I was allowed to choose the doctor performing the C-section. Normally you get whoever happens to be the attending that week but I was not comfortable with getting a random doctor. There are so many in this practice and I can't say I have much of a relationship with any of them. Some make me downright uneasy. Being able to choose a doctor I feel confident with has eased my mind considerably.

We also now know the neonatologist who will be working the week we deliver. We both feel she is compassionate and competent. I sense that she herself feels hope for Baby Girl and wants to see her do well.

Now that everything is in place all that is left to do is move through time and arrive at next Monday safely. Things may not go according to plan and delivery could be any day, but we now have a set goal to work towards. I am doing my best to stay calm and focused. I have always told myself that if it were possible to bring her here through sheer force of will then I would. When things are shaky I hold onto that and it helps to refocus my attitude.

This week one of my favorite words has been "No." There are two palliative care researchers here interested in interviewing women such as myself who have continued a pregnancy with a poor prognosis. Originally I agreed to be interviewed as it is hard to say no to a good cause. I have found, though, that the closer we get to delivery the less I want to talk about it (and the more everyone who walks into my room wants to discuss my feelings). I realized that I am really not up for a lengthy discussion about the trials of this pregnancy and declined. Such a relief to not be waiting for that knock on my door.

Then yesterday the attending decided I might have preeclampsia based on a handful of slightly elevated blood pressures. My BP has been trending up, but that is not uncommon in this stage of pregnancy. More importantly, not a single BP has actually qualified as being high, they are just higher than my normal. It seems when you enter a hospital that the doctors feel they have absolute rights over your body and can put you through whatever they ask without a lot of consideration. This doctor decided, to play it extra safe, that I should have a catheter for 24 hours to screen for preeclampsia. I am leaking amniotic fluid so a traditional urine collection would be inaccurate. Preeclampsia is very serious and I don't take it lightly. However, I am also not subjecting myself to a catheter and the risk of infection when I do not actually have high blood pressure. I refused the catheter, annoyed some people but have been sitting here with very normal BP ever since.

Do I sound cranky? I feel a little cranky and have been apologizing a lot for my attitude. I sometimes feel that I have taken a departure from my normal personality and hope this is just temporary hospital induced craziness. Seriously, though, you should pity the poor fool who comes into my room suggesting a catheter for no good reason.

Despite all of my tension, today there is a wonderful bright spot in my life that has left me smiling all day. One of my fellow pPROM moms, Amber, gave birth to her daughter this morning. She is in the NICU and doing very well. Amber ruptured very early, much like I did, and has been an incredible woman throughout her pregnancy. I am so thrilled that her little girl is here and fighting. They will all be in my thoughts and prayers as she grows stronger every day.

Being a part of the "pPROM community" has been an emotional experience for me. There are so many women who have to say goodbye to their babies far to early and each loss is devastating. The mothers and babies I have grown to know and care about along the way will always be in my heart.

This pregnancy has been about 5 years long, so to see an end date so close on the calendar boggles my mind. I sort of thought I really would be pregnant forever. I appreciate all the good thoughts and prayers as we enter this final week of pregnancy and prepare to welcome our new daughter. It is an emotional time but I have learned that even when it doesn't seem possible you really can dig deeper and find more strength.

Thursday, April 15, 2010


Well, I finished my post this morning and immediately discovered I was bleeding again. The nurse put me right on the monitor and Baby Girl had another nonresponsive NST. I also started having regular contractions. We had another biophysical profile and once again she looked great. She was tolerating the contractions well so the doctor decided we will wait and see.

She did say that the nonresponsive NSTs may indicate the start of a low grade infection. She ordered a CBC and my white count is fine. I don't have any other symptoms, so again we wait and see.

So far there has been no real change. Still bleeding and the contractions are fairly frequent. I have not been moved to Labor and Delivery, something I very much appreciate. I do have an IV in place though which is reassuring.

Amidst all the excitement of this morning the maternal fetal medicine doctor and the neonatologist met with me to discuss delivery. As things have not been going smoothly lately with the abruption and her NSTs we are all in agreement to deliver at 34 weeks (of course Baby Girl may exercise her right to be born at any time). For those who don't want to do the math, it means we are looking at April 26th or 27th, depending on the schedule of my preferred doctors.

I hope to update soon saying that life has returned to boring. Please keep good thoughts and prayers for our little girl. She is such a strong baby and has handled the stress of low fluid, placental abruption and constant contractions beautifully.

Wednesday, April 14, 2010

Stress and Nonstress

Today we are halfway through April and I am starting to wish I could slow time down a bit. As anxious as I am to be paroled and get back to my life I am not ready to face the delivery of Baby Girl. It seems the whole floor is feeling the pressure of it. I am lucky to have so many nurses who are committed to this baby and her outcome. It is clear how much people want the best for her.

Yesterday Steve had a rare lull in his workday and was able to stop by the hospital. This worked out well for two reasons-the hospital cafeteria was hosting a jazz club event and Baby Girl Tee required some extra attention.

Our sweet girl has been slacking on her NSTs this week. She should have two accelerations in 20 minutes but lately it takes her 40 minutes to an hour. The first day or two of this I wasn't overly concerned but now that it has been four days straight I am worried that it is a trend. Yesterday she outright failed for the first time. It was a relief to have Steve here as I was growing nervous. When a baby fails to have a reactive NST the next step is a biophysical profile (BPP). You can get a total of 10 points but going in with a failed NST means we were already starting with an 8/10. If the score drops down to 4-6 the doctors have to start evaluating whether or not she is better off being delivered.

There was a delay in finding an ultrasound tech so we ran away to the jazz lunch. I was under the impression that there would be live music but it was a CD. Still more music than I get most days. The best surprise was that the food was not prepared by the cafeteria-it was all local food vendors. All you can eat without spiking your blood sugar! There were an impressive amount of vegetarian selections including a wonderful vegetarian gumbo. I was the only patient there (at least the only one sporting a blue gown) but it was SO nice to have a diversion.

Baby Girl clearly loves vegetarian gumbo because she rocked the BPP when we returned. We actually saw practice breathing for the first time. You wouldn't think a moving diaphragm would be adorable, but it really is. She also squeaked by with just enough fluid to pass and had plenty of good movements. Her little frogger legs are looking chubby. As we suspected she is also very much head down now. So she passed the BPP with 8/10 and we made it through another day. Right now I am waiting for her next NST to start and hoping she peps up for it.

Today one of my favorite nurses said she spoke with the attending regarding the slow NSTs and while the doctor is concerned it is not concerning enough to warrant delivering a baby at 32 weeks. I agree but I also hate sitting here waiting for something else to go wrong. I also hate that my doctor will speak frankly with the nurses but not with me.

I have decided that after the delivery date is set I will not be talking with the NICU again until she is born and we know exactly what we are facing. We met with a neonatologist yesterday as we are trying to determine the best timing for delivery. These doctors can shred hope with great efficiency. I have started to challenge their prognosis openly. The truth is, this hospital does not see many women with pPROM this early who go on to make it this far (in the recent memory of the nurses there has been one in five years with a similar scenario. Her baby lived). My impression is that they are basing their opinions on the very few cases they have handled (which I consider to be anecdotal and not statistically significant) or on studies done in the 1980's. I have found many contemporary studies that suggest much better outcomes with current NICU treatments. It seems we are also being lumped in with women who have low fluid for other reasons, such as kidney complications. While there may be some similarities with lung development issues it is still a very different diagnosis. Now when I am given an overly negative outlook I ask specifically what they are basing their opinion on. I understand we have very good reason to be concerned, but we also have more reason to hope than they allow. I remind myself every day that doctor do not know everything.

For what it's worth, Baby Girl Tee actually does have a first name, but my husband has developed some superstitions and does not want it shared before she is born. We are still working on the middle name and Annie has given us some interesting suggestions (including the ever popular Cinderella). She still wants to name the baby Emily but Steve is firmly set on the name we chose.

Annie is, as always, my walking ray of sunshine. Seeing her in the evening lightens the stress of day. The other night we were in the chapel and I read the Lord's Prayer to her. A few minutes later she wanted to read it to me. Her version goes like this "Please give us our lunch as fast as you can." Amen!

Sunday, April 11, 2010

"Fly like a butterfly, sting like a bee"

(oops! The date is wrong.)

Today we reached a wonderful goal-32 weeks. It is such a blessing to be able to say that. Baby Girl continues to do well. We had an ultrasound this past Wednesday and while the fluid was very low she has stayed on the same growth curve (32nd percentile). She is now estimated to weigh 3lbs 6oz. This means that if she were born now she would now longer be considered a micro-preemie. Just reaching 32 weeks means that she will not be facing overwhelming complications from prematurity. We have more than enough to worry about with her lungs so we feel a great sense of relief in making it this far.

This past week seemed to last a month. All those stereotypical things people complain about with hospitals are so true and wearing on me a bit. I have a tendency to get cabin fever easily and this staying in one room for weeks on end is bringing out parts of my personality I'd rather not face. I am beginning to identify with The Shining much more than a normal person should.

The upside is that as my reserves are depleted other things rise up to ease the pressure some. I do have a medically necessary private room now and have for 2 weeks. This is probably the most significant change and has done wonders for me. I really think if I were continuing to deal with roommate issues at this point that I would be hiding in the bathroom all day or the nurses would be calling security to pull me off of some drug addicted roommate.

The other big change is that some of my most favorite nurses have taken it upon themselves to tweak the schedule so I am almost always assigned a preferred nurse. Bless their hearts for being protective of me. The kindness these women have shown me over the past 8 weeks is priceless.

Oh! I also have been able to continue my IV holiday. I should knock on wood but the closest "wood" in my reach is the wood grain sticker on my hospital tray.

I recently met with the child life specialist that works with the NICU. As delivery approaches I realize that I have no clue how to balance the needs of both children aside from changing the laws of space and time. There is a very real possibility that Baby Girl will be critically ill and require NICU care. I will undoubtedly want to be at her bedside as much as possible. At the same time I will have a two year old at home that has not had full access to her mother since early January. Being healthy does not mean that she will not need her mother. I don't want her to keep making sacrifices any longer than necessary. The child life specialist gave me great guidance in regards to splitting my time and giving Anneliese more stability in her life. Until a few weeks ago I never knew child life specialists existed but boy are we grateful for the resource now.

We also talked about how to approach all the possible outcomes with Annie. It is hard because with such an uncertain pregnancy we really don't know what to prepare her for and will be making it up as we go. It is a comfort to know we will have professionals to help walk us through it. She said they do a lot with play therapy at her age as two year olds can't express themselves very well verbally. I laughed and said "Well, you will have to meet our Anneliese." She has no problems sharing what is on her mind and has an impressive awareness of her emotions.

She also explained that quite often with young children the stress of having mom in the hospital does not come out until after mom returns home. At that point they feel safe expressing their frustration and want to test Mommy to see if she will leave again. It is good to be able to anticipate such bumps in the road and prepare in advance. In general she continues to handle the separation very well but lets me know she is not happy about it. Tonight while playing she sang "I'm a silly girl and I live in a house where I really miss my Mommy all the time." It broke my heart to hear it but I am very grateful that she can share her feelings. It's all I can do to stop myself from running back home to be with her.

As for Baby Girl Tee, she is a moving and punching machine. I may nickname her Cassius Clay. I have several sore spots on my abdomen from her antics and I am always impressed by her brute strength. Sometimes I think having to move against so much resistance has made her "buff." At any rate she is a true fighter in every sense of the word.

In the most exciting thing to happen to me in weeks she has gotten herself in a position where she is blocking the fluid from escaping. I have not leaked for 2 days! This is honestly thrilling for me. Her movements feel more gentle, as if she is floating just as a baby should. My belly is bigger and has a nice rounded shape. The biggest difference though is that she has not had big decels during NSTs because her cord has the cushioning it needs. Now, she can move from this position at any time and this wonderful swimming pool will be gone in a minute but for now the two of us are going to enjoy the luxury of amniotic fluid.

The doctors made a point of explaining that fluid levels increasing at this point will not change the status of her lungs as we are out of the period of critical lung development (leave it to doctors to dampen my excitement). At the same time, I think having a good amount of fluid may exercise her lungs more effectively as she practice breathes and help them maintain flexibility when she is born. I have no scientific proof of this (and I have cut myself off from reading any more oligiohydramnios, pPROM, hypoplastic lungs, etc studies) but in my mind in makes sense. At any rate it certainly can't hurt things.

I hope this post is somewhat coherent as I am running on very little sleep and my typing is atrocious. Again, I am so grateful for the support we continue to receive. This is a challenging time and every kind word and prayer helps.

Here's hoping for a nice calm week ahead! If you can believe it delivery is at most 2-3 weeks weeks away.

Anneliese sharing one of her favorite hospital hang outs with her cousin. It was so nice to have time with my family. Thanks again for the visit!

Sunday, April 4, 2010

Happy Easter!

It is incredible to me that I was here for Ash Wednesday and have now celebrated Easter in the hospital. This is hardly the ideal place for a family to spend a holiday but we made the best of it. Today also marks 31 weeks of pregnancy for Baby Girl-one week to go to the next big goal!

Saturday Steve brought in supplies to dye Easter eggs. There was a lot of traffic in and out of my room as everyone wanted to check out Annie's art work. A dear friend was here from out of town and she took Anneliese for a few hours to give Steve a break. He stayed at the hospital and napped with me-a well deserved luxury. We capped off the night with dinner and watching Annie color pictures. A very nice Saturday!

It seems my body was less than happy with the events of the day and my night was spent with some increased contractions and bleeding. I was able to stay on my regular unit for monitoring and things settled down pretty quickly. My nurse commented that it was odd that I was not acting concerned. I think I have just learned to wait things about a bit before I get all worked up. This pregnancy has been one long roller coaster and at this point not every dip gets the same reaction.

This morning things had improved and I was very grateful to have the day with Annie and Steve. She was thrilled with her Easter basket and absolutely loves Buzz Lightyear. He is the REAL Buzz, don't you know. Apparently she grew him in her belly. We celebrated Easter lunch with the traditional American holiday dinner of take out from Moe's. There were two nice wheelchair rides outside, an Easter egg hunt in my room and a viewing of Cloudy With a Chance of Meatballs. Today was a great reminder that you can be a family anywhere under any circumstances. It was not how I would plan the ideal Easter yet it was such a nice day regardless.

So I did get a new IV on Friday. I discovered the unit's secret weapon-a nurse who used to work on the IV team. It was a such a blessing to have someone both talented with a needle and also willing to listen to me and my needs. By far the best IV placement I have had yet and I spent the rest of the day praising her to everyone willing to listen. I now call her the "vein whisperer." Unfortunately after only 2 days in the IV failed to flush this morning and needed to be removed. I was beyond frustrated. For those who don't know me personally, I have limited use of my right arm due to a nerve condition that also leaves my arm off-limits for needle sticks and blood pressure checks. When I have an IV in my left arm it is very difficult to get a placement that does not limit the use of my left hand. When both hands are compromised I am left pretty helpless. I am pretty good at adapting but there is no way at this point that I will learn how to wash my face and brush my teeth by using my feet.

When the doctors came around today we had the IV conversation again and decided to try for another IV holiday. It makes me nervous as I want them to have immediate venous access in case of emergency but I need to balance that with reality. I do not have the veins for new IVs every few days. I imagine the holiday may be short lived but I am grateful for the break.

Baby Girl continues to do well. Throughout the bleeding and contractions she always looks great on the monitor. People have been telling me all week that babies grown in stressful environments (such as my uterus at this point) mature faster. It's as if their bodies know they need to prepare to jump ship early.

Posts are more fun with pictures so here are some from our hospital Easter. Thank you all so much for your continued support and words of encouragement!

Friday, April 2, 2010

Diamonds are a girl's best friend...

Back in February (a lifetime ago) doctors advised Baby Girl to hold off for an April delivery and secure herself diamonds for a birth stone. She seems to have taken the advice to heart and we safely arrived in April with everything looking stable. I am fairly certain this means she will be getting a nice diamond for her 16th birthday. Oh, and a car. I have resorted to bribing my daughter in exchange for her good health.

Yesterday my goal was to get through the day without delivering her on April Fool's Day. During her morning nonstress test she looked a bit different than normal. She tends to have a baseline of 145 with occasional accelerations. Yesterday her heart rate was consistently going up over 160 and staying there for prolonged periods of time. It would come down for a few seconds only to return to an extended acceleration. Our concern was that her heart rate was trending up, and that can indicate infection. In the technical sense she passed the NST but the nurse and I were left with lingering worries. When she next checked her heart rate four hours later it was again elevated so I went back on the monitors for another NST. The whole strip was beautiful-she stayed right in the 140's with the exception of a few accels and decels. Such relief!

This morning, however, my nerves were put to the test again. My nurse came in for her morning heart rate check and Baby Girl immediately went into a long decel. I hate that sound so much. We waited it out but she wasn't bouncing back up. The advantage of the hospital is that I was immediately placed on a monitor to get a better idea of what was going on. It is an awful shock to go from drowsy morning vitals to adrenaline fueled terror. These sudden changes in status have become one more unfortunate fact of life right now and do nothing good for my state of mind. She had one more deep decel so I stayed on for an hour. The rest of the time she looked perfect. Once again I am left wishing I could be at a bigger hospital that can accommodate around the clock monitoring. I understand the doctors are comfortable taking a calculated risk not monitoring 24/7, but then again she is not their daughter. Baby Girl is right now blessing me with a lot of movement and helping me recover from the shock of this morning. She really is one amazing little girl.

One happy development this week is a proactive nurse talked the doctors into discontinuing my early morning rounds. The way it used to go is I would have vitals done at 4:00 to 4:30AM where the nurse would ask me the usual questions about contractions and bleeding. Just after I fell back asleep a resident would pop in at 5:00AM and ask the same questions. The conversations often went like this (actual conversation):

Dr: Anything new?
Me: No. Everything is contractions, no abdominal tenderness and the bleeding is down to a light pink.
Dr: OK, any contractions or belly tenderness?
Me: No, everything is contractions, no abdominal tenderness and the bleeding is down to a light pink.
Dr: Still bleeding? What color is it?
Me: Yes, still bleeding but it is just a very light pink now.
Dr: OK, so would you call it a bright red, like kool-aid?
Me: (in my head)WHAT??? Didn't I just say very light pink????? Why ask questions if you won't listen to the answer??!!!
Me: (out loud) No.....I would say it is a very light pink. (said slowly in hopes of Dr. actually listening).

Luckily it is too dark for them to see me roll my eyes. By the time they left I was wide awake and there was little hope of more sleep. So now that morning ritual is no longer and while I may not fall asleep until 2AM I can at least count on a few more hours in the morning. I do still have my 4:00AM vitals but that is much easier to fall back asleep from. Thank goodness for nurses who can talk sense into doctors.

We are making plans to celebrate Easter in the hospital, complete with decorating eggs. I miss not being able to buy her Easter basket goodies but I am sure Steve will enjoy playing Easter Bunny.

Yesterday we were outside for a bit and she saw an orange traffic cone. This reminded her of the street crossing scene in Toy Story 2 and she insisted on checking it several times for hiding toys. I happen to know that the Easter Bunny is bringing her a Buzz Lightyear so now we are tempted to hide it under a traffic cone for her to discover. That temptation is reduced when I consider it inspiring years of searching traffic cones for surprises.

One blessing in the midst of this complicated pregnancy has been the ability to connect with other pPROM moms over the internet. When first diagnosed I was able to find people who had previous pPROM pregnancies and they gave me the first glimmer of hope that our baby had a chance at survival and that I could persevere. They continue to offer me inspiration and support. Now I have also come into contact with many women who unfortunately are on the same complicated journey I am. I regret that anyone has to go through this but am so grateful that we have a way to face it together. The support, understanding and positive encouragement of the pPROM mothers continually lifts me back up and helps me face each day with a better attitude. So to all the PROM Queens, past and present, who have offered their friendship and support, a heartfelt THANK YOU! You make me a little less crazy every day!

Today is "Get a new IV day!" Wish them luck in finding a vein that has not been burst or frightened into hiding. I know you're jealous!