I eventually want to dedicate a tab of my blog to information solely about Hydrops....until I figure that out, I would like to go ahead and post this information, as this is one of the best summaries I have read, and I will add to it as I can.
Auguste has NON IMMUNE Hydrops and cause grossly unknown, alhough his thoracentesis showed 85% white cell count which tells us that the fluid is lymphatic and therefore, we know chylothorax is involved. However, the cause of the chylothorax is still unknown. He was diagnosed at 19 weeks and we know that is happened spontaneously, as his 16 week scan did not reveal any issues.
Because hydrops was found early, his prognosis is considered "poor". That being said, we are almost 29 weeks and he is still stable, active and although he still has a long way to go, he would not be the first child presenting like this to survive and we are cautiously optimistic to what the future holds for him.
Immune hydrops is a complicated process that takes place between the baby's blood and the mother's blood. If a mother is Rh negative and her baby is Rh positive, the mother's body can react to the Rh positive factor in her baby's blood as if it were a foreign body, such as a virus. The mother's body will make antibodies to attack this foreign body. These antibodies will destroy the baby's blood cells.
This destuction of the baby's blood cells causes an anemia (low blood count) in the fetus or unborn baby. The fetus tries to make more red blood cells but is unable to make enough to replace the ones being destroyed. Then, the liver, spleen, kidney, adrenal glands, and intestine try to help in making red blood cells to try to keep up with the numbers that are being destroyed. The blood cells produced in these other organs are usually immature and are referred to as erythroblasts. This gives us the synonym for immune hydrops, erythroblastosis fetalis. The organs that are trying to produce red blood cells are also unable to keep up with making enough to replace the ones that are being destroyed. As the organs work harder to keep up they become enlarged and distorted. Eventually, hydrops may develop because of problems with the blood flow to and from these organs. Most cases of Rh incompatibility (Rh negative mom and Rh positive baby) will result in a mild to moderate hemolytic (blood) problem. However, in 20 to 25 percent of cases, a more severe form develops. In these cases, the baby develops general swelling of the body, ascites (fluid in the abdomen), pleural effusions (fluid around the lungs) and tachycardia (increased heart rate), the classic picture of hydrops.
The incidence of immune hydrops has decreased greatly since the introduction of RhoGAM in the 1960's.
Non-immune hydrops makes up about 75 to 90 percent of all cases of hydrops seen today. Non-immune hydrops can be the symptom of a number of congenital conditions.
Also, more rarely, non-immune hydrops can be caused by problems with the placenta, umbilical cord or the mother's body. In approximately 5 to 8 percent of the cases no known cause can be identified. These are classified as idiopathic meaning the hydrops is the result of an unknown cause.
The incidence of immune hydrops or erythroblastosis fetalis has decreased dramatically since the 1960's due to the introduction of Rh immune globulin or RhoGAM as well as improvements in treatment options. The incidence of nonimmune hydrops is hard to calculate because many cases will result in fetal death and/or miscarriage of the baby, and some will get better on their own, especially when it is the result of an infectious process. The range of incidence is reported at 1 in 1,500 to 4,000 deliveries.
Prenatal diagnosis (before birth) of hydrops is accomplished by ultrasound. An abnormal or increased fluid collection is noted in at least two distinct fetal body cavities or spaces. Examples can include the abdomen, around the heart and/or lungs and in the subcutaneous tissue. In most cases there is also a general increase in the amount of amniotic fluid (polyhydramnios) and the placenta is thicker than normal. If fluid accumulation is seen in only one area, the diagnosis of hydrops cannot be made. Instead. an increased amount of fluid is simply noted in that area. To differentiate immune from non-immune hydrops involves a blood test of the mother that looks for antibodies associated with blood-group incompatibility.
Because cardiac (heart) anomalies or disorders are a common cause of non-immune hydrops, a fetal echocardiogram (ultrasound of the heart) is highly recommended to look for any structural abnormalities or abnormal heart rhythms. Other tests may be done looking for infections, genetic disorders or other congenital issues that have been linked to the development of hydrops. Your obstetrician will refer you to a specialist that handles high-risk pregnancies. These doctors are called perinatologists.
How does Hydrops Fetalis affect my baby?
Hydrops fetalis is a symptom of a problem with the baby. Immune hydrops will rapidly become fatal for the fetus if left untreated. An infant/fetus with hydrops is severely compromised. The earlier this diagnosis is seen the worse the prognosis. Some of these babies may even die before they are born. When the diagnosis of immune hydrops is made, it needs to be treated as an emergency and immediate arrangements are made for treatment. The treatment will be partly dependent on the gestational age at which the diagnosis was made.
There is a 60 to 90% fetal mortality associated with non-immune hydrops. This mortality rate is dependent on the underlying cause. Many of the underlying congenital anomalies (birth defects) have an extremely high mortality rate in and of themselves. Sometimes, no cause is ever discovered but the perinatologist will be aggressively working to try to find out why the baby has developed hydrops. Some causes can be treated, so the doctor will especially be looking to see if there is a treatable cause. Generally, the earlier in gestation that fetal hydrops is seen, the poorer the prognosis.
If the baby survives to delivery, these babies with hydrops have a distinctive appearance at birth. The babies born with hydrops are very swollen with a large round abdomen due to the fluid collection in the abdominal cavity. Often, these infants will have severe respiratory distress or breathing problems due to a variety of causes. Many have lungs that did not develop completely. This is thought to be a result of limited space in the chest due to a swollen liver and a diaphragm that is pushed upward from the fluid that collected in the abdomen. The polyhydramnios (larger than normal volume of amniotic fluid) may interfere with normal fetal breathing movements also. The smaller than normal lung size results in altered blood flow through the lungs, and higher than normal blood pressure in the lungs. This increased pressure in the lungs limits blood flow through them and limits gas exchange with breathing. The lungs need to rid the blood (and ultimately the body) of carbon dioxide and add oxygen into the blood. Many of these babies have fluid collection around the lungs and/or heart, which complicates already compromised breathing and heart function. Another common complication for these infants is severe low blood sugar (hypoglycemia), which is thought to be the result of altered function of cells in the pancreas. The cause of this altered function is not well understood. Hypoglycemia or low blood sugars put these babies at risk for seizures, apnea and potentially brain injury if not treated quickly. If the underlying cause of the hydrops can be linked to anemia, the baby is at an increased risk of developing hyperbilirubinemia. This problem can become severe very quickly and can potentially cause neurologic injury.
How does Hydrops Fetalis affect my pregnancy?
If your obstetrician suspects a problem with your baby, you will likely be referred to a perinatologist. These are doctors who handle high-risk pregnancies. The perinatologist will perform a targeted ultrasound to look at all of the baby's anatomy (the body and it's systems such as heart, lungs, abdomen, head/brain, arms, legs) and assess the location and amounts of fluid accumulation. He or she will be assessing you and your baby to look for the cause of the hydrops, follow the progression of fluid accumulation and monitor the well-being of both of you. Other specialists you may see are a neonatologist, who will care for your baby once he or she is born; a geneticist who will be evaluating the family health history; and any other specialist as necessary to treat the birth defect(s) that have been noted on ultrasound.
Hydrops may be complicated by preeclampsia and/or mirror syndrome (involves pregnancy-induced hypertension or high blood pressure with renal/kidney involvement) in up to 50 percent of the cases of non-immune hydrops. With mirror syndrome, symptoms in the mother mirror the symptoms in the fetus and can be life-threatening for her. Mirror syndrome can happen at any time during the pregnancy and can persist even after the baby is born. The only treatment for mirror syndrome is immediate delivery of the baby and/or when possible, treatment of the fetus to resolve the hydrops. Preterm labor can be a complication of polyhydramnios (as well as preeclampsia).
Treatment for hydrops is dependent on whether there is a specific diagnosis to treat. Otherwise the treatment is simply supportive or symptom-focused.
Babies with the diagnosis of fetal anemia as the underlying cause of hydrops have good outcomes to fetal therapy. The treatment includes a percutaneous umbilical blood sampling (PUBS) procedure to document the fetal hematocrit and to perform an immediate blood transfusion for the baby. The amount of blood given is calculated using the desired hemotocrit against the actual, the hematocrit of the blood being transfused and the estimated fetal weight. The goal of the initial procedure is a hematocrit to 20 to 25 percent. This procedure is repeated in 48 to 72 hours to bring the hematocrit to 45 to 50 percent. Then, transfusions are done at two- to three-week intervals, with the last one done at 34 to 35 weeks' gestation. These babies should improve before birth.
The treatment protocol for other cases of non-immune hydrops is aimed at the underlying cause. If the underlying cause is known, the benefits and risks of the treatment will be weighed against likelihood of survival. Babies that have not shown improvement before birth should be delivered at a tertiary care center that is able to provide complex resuscitative efforts in the delivery room. Open discussions about palliative care versus aggressive resuscitation can be openly reviewed with you prior to delivery. The plan for care of your baby can be planned with the neonatologist.
For infants without any specific diagnosis, treatment is supportive as we give the baby time to reabsorb all the edema. Often, there are complications like infection and sometimes the baby is unresponsive to the support provided.
The best method for delivery of babies with hydrops is uncertain. To minimize the amount of maternal and fetal trauma, a Caesarean section may be recommended. At delivery, most babies who are being aggressively resuscitated will require endotracheal intubation (the placement of a special tube in the windpipe) for help breathing. Placing the breathing tube can be difficult because of the swelling from the excess fluid. High-frequency ventilation and high airway pressure settings may also be required to provide the baby with enough oxygen. To help the baby breathe, tubes may need to be placed in the chest to help remove fluide from the abdomen and around the lungs.
Special IV lines may be placed. Normally in the umbilical cord there are two arteries and one vein. Umbilical artery catheter is placed in one of the arteries of the umbilical cord. With this special line, fluids can be given, blood pressure can be monitored, and blood can be removed for blood tests. An umbilical venous catheter is placed in the vein of the umbilical cord. With this IV, fluids and medication can be given for a prolonged period of time.
Some specific anomalies have been treated with fetal surgery (such as congenital cystic adenomatoid malformation and bronchopulmonary sequestration) only if and when the complication of hydrops is seen. You can discuss this option with the perinatologist.
Will I be able to help care for my baby after birth?
Yes. Please ask your baby's nurse about ways to interact with and care for your baby. These babies are typically very ill at birth and will require aggressive treatments. To help in your understanding about what is being done and why ask questions about the treatments and procedures and visit often with your baby.
If you had planned to breastfeed your baby, you can begin to pump and freeze your breast milk while you are still in the hospital. A lactation consultant can assist in answering your questions. Your milk will be frozen and stored in the Neonatal Intensive Care Unit until your baby is ready for it. The NICU has breast pumps and private rooms available to you when you are visiting. You can bring in pictures, small toys, booties and blankets for your baby while he or she is in the NICU.
If the treatment leads to a reversal and the hydrops resolves, the infant may eventually go home. However, for an infant with non-immune hydrops the prognosis is very poor. Your baby must be able to eat enough to maintain and gain weight and breathe effectively by himself or herself before going home. It is important to remember the complication of hydrops has a poor prognosis of survival except for those cases that have a definite cause with established fetal treatment.
Mickey told me this weekend that this was the first time since he met me that I did not look on the brightside. He truly feels everything with Auguste is going to be ok, and he doesn't know why I suddenly look at all angles and see the negatives. I don't believe I am a "bright side of life" kind of girl, and was surprized he even thought that of me. It is possible he felt that ways because I pretend the bad stuff isn't happening and ignore it...but the truth is, I haven't faced many extremely dire situations on a personal level. I think that looking at the brightside of financial struggles, etc...is different than preparing yourself for the possibility of something like losing a child. I feel that I want to experience every little thing this pregnancy offers...good and bad...because I want to know I faced it head on with my head high and let myself learn and be changed by all of this...in the way only true love can do.
Today we hit 28 weeks and I feel good! This week is the first week since Auguste was diagnosed that I felt excited about what our future holds. Certainly, I think a lot of this is the nesting that is settling in...but I feel great.
Our visit today went well. The doctor called things stable. His abdomen is measuring large, at about 32 weeks and 4 days, so more than 4 weeks ahead of schedule. However, his lungs looked good. In fact, I personally feel that they looked better than I have seen them. He still has bilateral pleural effusions, but as we observed both lungs, at least a small portion of each of them went all the way to the chest wall. I have never seen his lungs this expanded before.
They are still unconcerned about his abdomen, although this will certainly play into how he is delivered, as currently, his head and abdomen are the same circumference and we would not want to risk him getting stuck in birth canal...which would either mean C-section, or paracentesis (drawing off fluid from abdomen) right before delivery. More questions for CHOP.
They basically do not feel that the ascites will cause any distress at birth for Auguste. However, today, the doctor said "if this was one of your oncology patients, they would probably not be in any distress with pleural effusions this size". Yes, if they don't get better, he will still require chest tubes at birth, etc...but they truly looked better.
The doctor who has seen me on my last two visits, Dr. Dillinger, is also the first doctor who ever met us and told us about hydrops. Last week, I could tell he was surprized to have Auguste still so active and strong 8 weeks from diagnosis. Today, he truly seemed to feel confident we would get to delivery and even seemed relatively positive. I can't wait to get to CHOP and get their opinions and also create a birth plan.
I then went downstairs and got to do the lovely glucose tolerance test. I don't know the results yet, but I assume it will turn out fine. I got to meet with Dr. Twedt, who I adore. I had Emily with me, and basically Emily sat in DR. Twedt's lap and got loved on our entire visit. I told her how I was feeling confident and she was excited and confident with me. Shereiterated to me how HUGE 28 weeks was and how each week from this point is just that much closer to our miracle. I told her how before this pregnancy, I don't think I truly understood what a miracle each of these children truly are. I feel truly blessed and excited once again about the little boy that I truly believe we will be welcoming in home in a month or two.
I even registered, finally. I am still not sure about a shower. A few friends have asked about this and I am not sure I want to do anything like this BEFORE he is born, but perhaps that too will change as he continues to improve. But I felt registering, even if only for some silly little things, was a positive step in the right direction.
After our appointment, I dropped Emily off with Mickey and I stayed downtown for a work related meeting. I had a bit of time to kill and I walked into a store I have been wanting to visit called the Half Moon Outfitters. I walked around, browsing all the great clothes and shoes and flashlights and other fun stuff. I then asked if I could be led to the bathroom, because I am in THAT stage of pregnancy. The guy leading me there laughed and said he was an expectant father and he understood. As I was leaving the store (without any purchases) I said goodbye and thank you and he started talking to me and asked when I was due. I told him Feb. 19, but that it was likely he would be born sooner. He laughed and it turns out, his baby is also due on Feb.19. He asked about the baby and wanted to know what was going on and was sincerely interested in hydrops, etc. He was very sincere and it was great to meet someone who was also expecting a baby at the same time as us. It even made me feel like perhaps, things would continue to improve and maybe we would still get our February birthdate. You just never can tell...but the light at the end of the tunnel seems brighter to me.
If I am cleared at CHOP, I do plan to retunr to work. I loved meeting with co-workers tonight. I have always loved my jobs and loved to work, and I truly feel like being back there, with my patients and co-workers will do me a lot of good, even if it is only for a few weeks.
On my way home tonight I was listening to Pandora and I wish I could just put a link to the play list that I got...those closest to me know that the crooning of Eddie Vedder relaxes me and truly makes me feel good...so tonight...I feel, well, even better.
Hello friends. Thank you to all who still read my blog, I know I often get emotional and ramble on...and I appreciate that some of you still seek the details. Auguste is approaching 27 weeks. I am very excited. Today I spent time reading on the facebook hydrops support pages, and of course, found equally inspiring and depressing news. But Auguste has been very active all day today and I continue to pray the days keep coming and that we too, have a success story. Every night the kids pray for baby Auggie, and they all three love to pat my belly and say "I love you Auggie".
I figured today I would blog a little about whats been going on with the other Losinski babies. I am currently blogging in my big comfy chair and kids are screaming and squealing all around me. The weather is beautiful and so they run inside and then outside. Buttercup has approached me several times to adjust her spiderman swim goggles on her chocolate cookie face. Boy is wearing pajama pants and a dirty soccer shirt and has taken over as leader of the chaos. Bluebird is wearing a skirt, legging and cowboy boots, with her red pea coat (always a fashionista). She woke up at 4 am this morning complaining of pain to her left ear, but after some motrin she stated it felt much better. She got her finger caught in the door jam when Noah (our 12 year old lab) struggled to stand up to move out of her way and fell against the door, but she was a sweet and gracious about it as a 4 year old can be. A bit ago Boy came to tell me that both girls were on the top bunk...they are his bunk beds, but he has never ventured to the top bunk before...but both girls love to climbthere and sometimes get a bit crazy (Bluebird is quite the gymnast). So, now I am returning to this blog, after going upstairs and removing the ladder and instructing children to play safely. So, at this point typing is harder because Boy decided it would be best to lean against me and Buttercup decided to snuggle with Daddy and drink some milk.
Last week Boy and Bluebird both got their soccer trophies. Bluebird, who is naturally athletic, really didn't care much about the soccer season and spent most of the games getting her teammates to goof around with her. Boy impressed us a great deal, and made real progress and dare I say, was pretty dang good. We are looking forward to Spring season, where we expect to see even more talent arise out of our little lefty. Many of you know the Boy is on the spectrum, and has many challenges, particulary picking up social cues. However, he has had a wonderful year this year. Academically he amazes us on a regular basis, and he is also making friends and truly desires to be engagaed with peers. I was able to help in his classroom two days this week, and loved having an insight to his daily world...even though now he keeps asking if I will come every day. It is great to have a child who still thinks you are awesome and doesn't mind kissing you in front of his friends. The little girls from his class loved touching my belly and asking about baby Auggie, as they, too have been praying for him. Sweet sweet children.
Bluebird once again amazes me with how utterly caring she is for her baby sister. She gets three skittles after each day in class, and when I pick her up she always leans in and gives Buttercup at least one of them. She helps her get dolled up in princess outfits and more. Just darling girls. I am blessed.
Last night I dreamed I moved back to Lakeland and remodeled my grandparents house...I awakened with the realization that their home was the perfect size and layout for my family, and briefly daydreamed of moving home and hosting our large clan during holidays. Its too bad we won't be moving back home anytime soon. Mickey has been working diligently to complete his phD and is interviewing and we are expecting to have a move planned and a destination in the spring. We DO miss being away from our families, during the holidays and all of the time. But today I bought a turkey and we are planning a nice quaint holiday dinner with our little family.
We finished Christmas lists today and I made wish lists for Santa to work from out of Toys R Us, Target and Amazon. They are great kids, and they certainly deserve a good Santa visit. Last year we decided to be very purposeful about any and all gifts and not get anything that would not be used throughout the year. We did really good and last years gifts are all still favorites. We planned the same thing this year and I am happy with the plan I have in place. I want to try to get things taken care of prior to returning to Philadelphia (early Dec), so that there are no concerns if I am unable to return until right before the holiday.
I did get a call from my manager yesterday and provided I do not get a shunt in December, it is possible I may return to work briefly before Auguste is born, we are working out the logistics, but I feel that if it works out it could be really good for me to be able to immerse myself into my patients a little. I miss them. I also miss my co-workers.
Anyway, life is pretty good here in the Losinski household. Keep us in your prayers as we face financial and emotional challenges, as well as many decisions and lots of unknowns.
I shouldn't be planning all the things I am currently planning. Shunts, NICU, chest tubes, and even possibly the unthinkable, all the dark things I don't want to write down.
I am also planning what to do about my sweet dog Noah. This guy has been with me for so long, through it all...and he is suffering and I know he isn't going to get better. I knew this time was coming, but I didn't expect it til spring, maybe summer even...and certainly never imagined it would have to be made at a time like this. But then he does little things that make me think he's perking up a bit, and I put it off...again.
It seems all my current planning is really just sad and hard. So today, I cried a lot. I think sometimes crying is really what a person needs from time to time. Just cry and feel sorry for yourself and realize that life is full of trials and pain, and that even the painful things in life are beautiful because they mean you are living. Beauty through pain.
I had a friend approach me while at the school today, just to let me know she was thinking of me and praying for me, and to always remember that God loves Auguste. I couldn't say much, as this dear friend suffered the sudden loss of a child, and knows first hand the unimaginable pain that even I have never experienced. But I knew that if she could smile and encourage me, and keep moving forward every day, that surely I will be able to as well...and that these weeks and these losses and these worries will get easier.
What if the trials of this life are mercies in disguise? These were the lyrics of a song I was sent today...and they've been on my mind quite a bit today.
Sometimes I get so caught up with the motions that I forget the gravity of the situation we are in. Everyday I know we are moving forward a day at a time, but the past few weeks we have been so caught up in this really great learning curve, and trying to get the right monitoring and be on the same pages with the different teams of doctors we are working with, and getting insurance squared away and completing different tasks that still need my attention at work, and care for our other children, school, finances, etc...and somehow, we start forgetting that our baby may not make it, or what truly worrisome things we face in the future.
Today we met with a new Greenville Maternal Fetal doctor, whose name is Dr. Francis Nuthalapaty. He was sort of hand selected by my OB as someone she thought would fit well with us and our plans for Auguste's care. She was right, he was really down to Earth, he stated right off the bat that if he was in this situation he too would be seeking treatment at CHOP, and he gave us sound research based information and answers to our questions. This was the first time he had seen us, but he had already done his research and knew all he could about us coming in the door. He also viewed photos of the previous scans and felt them to be stable. Auguste is still rigorous, reactive and perfect, although he remains very sick with both ascites and pleural effusions which remain "unshuntable" and moderate. He stated he would be sure to call the doctors at CHOP to discuss with them what they were waiting for regarding shunt procedure, etc...and felt he could certainly monitor us under their guidance and get us back to them when needed.
He then asked me how I was doing, emotionally. The question took me off guard a bit. After our visit, Mickey went to pick the kids up from school and I went downstairs to my OB. As I sat in the waiting room those words rolled around in my head again and again. How am I doing? Emotionally? Truthfully, the past few weeks I have been less emotional. It has been 7 weeks since this journey started, and the days that were filled with depression and tears, have turned into determination and education and hope. Hope is really probably not the best word...because I haven't even thought as much on that as much. Its a weird feeling. I don't know what I've been feeling. I truly have felt confidence. I know this is not a bad thing and that tears and worry are not healthy for me or for Auguste. However, I think when Dr. Nathalapaty asked that, it dawned on me that the things most physicians first think of when they hear "hydrops" is fetal demise. I realized that our chances, although much better than when we started, are still slim. We started this journey 7 weeks ago, but still have at least 7 more to go...its a long journey, to say the least.
I think I have told you that Auguste has perplexed everyone by not already "declaring himself", and the fact that he stays stable, not getting worse or better is unusual. I guess I have been thinking that we were basically waiting for delivery, and then meet the challenges of NICU, but that it dawned on me today that he could still get very sick very quickly in utero. I am scared. I have only one way that I want this to turn out. Despite my faith in God and my recognition that He has a divine plan, there is truly only one way I want it to turn out and I am scared of losing this little one. I see my future with my four children, and seeing a different future is devastating, to put it mildly.
I love this little boy so much, he is our son, and we would do anything for him even now. By definition in society, he is only an extension of me and not technically our living son yet, and we learned today that this will likely cause us some more hoops to jump through when the new year approaches as far as insurance and legalities of FMLA...This evening has been stressful to say the least with that new information and I have a lot to accomplish this week to prepare us to know exactly what to expect.
Mickey also wants me to call Dr. Johnson at CHOP and start planning our birth plan. I think we are leaning towards delivering Auguste at CHOP and perhaps spending the early part of the new year in Philadelphia. We know they are prepared for hydrops babies and that his best chances are probably there, even though that does mean temporary disruption of our family and even Mickey's research and dissertation, but that is how we are leaning at the present.
I don't have a good ending for this blog, as I usually try to tie them up with some closure of the day, but truly, there is no pretty feel good way to wrap up this day...I guess future days will reveal themselves more clearly.
Today has been filled with such a calming peace for me. Last night I fell asleep quite early, and I woke up in the night and looked at my phone for election results, and then crept downstairs to watch the speech, which is kind of a tradition of mine. I always like the speeches. I sat and watched, a little teary, and suddenly Boy was sitting in his jammies beside me wondering what I was doing. I let him know how the election ended and that now I am listening to the speech. He listened as well, maybe dozed, and I was filled with a sense of pride as I watched fellow Americans joining together with dreams of peace and love and community. I have so many dreams for this little boy who was sitting beside me, for the one snuggled INSIDE me and for the two little girls who were sleeping in their beds upstairs, and as I listened to that beautiful speech, I was proud for our country, and our future, and that Oliver was sitting beside me experiencing this little bit of history with me.
Then we went back upstairs and I prayed for the president and the challenged he faces, I prayed for his opponent, because I am always pretty sensitive to anyone's disappointment. I prayed for my family and I prayed for Auguste.
So many prayers for our baby boy.
As I moved through my day today, I was reminded of so many ways the Lord works. So many mysterious ways. I thought of my friendship with Beth. 15 years ago we happened to be paired on a mission, and we thoroughly enjoyed our experience, as tough as it often was, and we grew to respect one another then, and that respect continued, even though we haven't seen one another since a few months following that trip. There are very few people I would feel comfortable staying with for weeks at a time, but with Beth, it just didn't feel weird at all. We just picked up where we left off, and once again learned from each other and grew a little more in each others company. It just seems unlikely that this particular friend happened to live 20 miles outside of the city that I need to be in for extended amounts of time. Its as if it was planned, even then...15 years ago in Nicaragua.
In June my company merged with a local hospital and with that came challenges, many financial. This hospital offered several insurance plans, all good, but all much more costly than what I was previously paying. Mickey and I are on a tight budget and the idea of taking a substantial pay cut due to higher insurance prices, etc. was a point of concern. I was torn, but for some reason, after much discussion, we decided to go with the higher priced plan and we even decided to put the maximum amount possible into flexible spending and short term disability. We just figured that we could always change it later, but that maybe it would be in our best interest, even though we never expected worse case scenario. I actually told Mickey that if we had leftover flex pay, that I would get my eyes laser-ed. Of course, that won't be happening, and certainly there are still many additional expenses, etc. But the situation could have been much harder, and I feel amazed that the decisions we made but were unconvinced of, have made a huge difference in our lives.
There are many other "little things" and "small decisions" that have turned out to make big differences and seemed to prepare us for this journey. I realize that God is present even in our small decisions, and that He guides us in unexpected ways, but that there is a plan.
I have always been a seeker of truth and many times this has led me to question faith, question God. I have always been the type of person who needed a deeper understanding, never content with the simplistic. It led me to study theology and other great thinkers, sometimes finding answers and more times than that, finding new questions. Yet, I often surprise myself with the way that my trials seem to draw me even closer to finding those truths and my faith grows even stronger and I see God revealed within those struggles. That is one of the most amazing things about our God to me. Sometimes truth is cloaked and hidden for the seekers to find if they are willing to look. In our darkest hours, we see His light revealed and are reminded that He is in control, and that no matter how the story ends, it is all in the plan.
Today is a big day, election day. I am not going to say anything about the election except that I hope you all voted for who you felt was the best choice, and that no matter the outcome, we were all blessed to be able to have a voice in the election and that I truly believe, that despite some differences, we all want the same things and that in the future, I hope to see more binding together and less division with our approach to things. OK....now, about our sweet, precious Auggie!!!
We have been on this journey for 6 weeks and we are currently at 25 weeks gestation!!! The past few days have been a bit emotional for me. I am a member of several "hydrops" pages on facebook, and of course, sometimes the news is good and often the news is bad. I feel discouraged when I read the bad news, because I realize that even with all of our strides, this still could end badly. It is hard living day to day and week to week. Knowing that each milestone, though great, still represents more challenges left to go. I guess I sometimes fool myself into thinking that if we can only get to delivery and then see NICU babies struggling and passing and realize that even once we get to delivery, there is still a long road ahead of us.
I was talking to my mom today, wondering if I could pray more or cry more or crawl on my knees more...and I know the answer to this. I know that I am not being punished and that God has a plan and that He has a will and there is a purpose for all of this...but it is still hard to understand and it is scary.
Sometimes I feel that perhaps I get overconfident, and just as I start feeling at ease and really believe everything is going to turn out alright, then there is a set back or a friend starts struggling with their baby, and I realize how serious all of this truly is.
At first the hydrops pages on fb and emails from people were only discouraging to me and I could barely stand to go to them, however, of late, I have met so many others, who are traveling this journey along side of me, many being treated at CHOP by the same doctors, and many others getting shunts, some for other varieties of hydrops and some with chylothorax like Auguste. I have enjoyed meeting these friends and seeing the strides we are all making and truly feeling we could all very well see a miracle. Some of them are planning their birth plan and I know that our time is approaching very soon.
Right now we are feeling a bit torn with doctors and birth plan. We went to Charlotte yesterday and met with Dr. Stephensen again. She has spoken to Dr. Johnson at CHOP and has accepted us as patients to follow as closely as possible to monitor any progression of fluid. She seems a bit reluctant regarding what to do about our connection with Greenville maternal fetal group as I think she is worried about stepping on their toes, as well as knowing they would more than likely be involved in our birth if we stay locally. I know this to be true and have mixed feelings about it. I am meeting with my OBGYN Friday and I truly feel I can talk openly with her regarding all of this and get her thoughts. Hydrops is still a rare finding and there is still not really a standard of care. Because at least one of the physicians in Greenville pretty much blew us off at the mention of shunts, and was sure to show his disapproval of such things, I am not sure it makes sense for them to be monitoring to see whether shunt may be indicated, and at least Dr. Stephensen in Charlotte did train with Cincinnati and seems comfortable with this concept and has even done shunts herself. I do know that Stephensen's nurse, Emilie, has spoken to the Greenville MFM's nurse, Meredith, and they have agreed to at least find one physician willing to follow us at Greenville rather than bouncing around, if we decide to return there for some visits. I feel consistency is just as important as how often we are seen,and I think we need to have a physician who is also confident in what CHOP may be able to do to help Auguste, and know that their encouragement and eagerness will make just as much of a difference if we deliver in Greenville. I am also going to call CHOP this week and see whether or not we should try to get there in the next two weeks for checkup, to discuss our visit with neonatology and possibly start planning a birth plan. I know we live in Greenville, but when you find a group of doctors like at CHOP, who are not only helping your child, but also feel confident in their ability to continue helping him survive, it is difficult to imagine going from "warm and fuzzy" to a gloom and doom situation. I feel confident that Dr. Carrie Twedt (my OBGYN) will at least give me some guidance in navigating these issues and hopefully I will feel as if we may be able to proceed with a "game plan" involving HOME! Because obviously, if we can work out more stuff from home, the easier it will be for our family unit.
We just keep reminding ourselves that this is but a minute in the grand scheme of things, and as inconvenient as being in Philadelphia may be, if it saves our son, it is worth every minute and dollar spent.
So, all in all, Auguste still seems stable, although fluid is still remaining on lungs and abdomen, it does not seem to be getting any worse...which scares me less regarding sudden death in utero, but more involving what could happen after birth and in the NICU. Sometimes I feel grateful regarding not getting a shunt placed yet, and other times I just wish we would get there already as I don't know how I feel about fluid remaining on his precious little lungs. He is still a surprise in that he still has not really declared himself and we just keep waiting for something to get worse or better, and instead he just nuzzles himself into his placenta and shows us that he would really rather us just leave him alone already.
We have an appointment with OBGYN Friday and our glucose tolerance test is rapidly approaching. I return to Charlotte next Monday and will possibly go back to CHOP before Thanksgiving, although I am scared of getting stuck there during the holiday.
Things are stressful. Mickey is in school, I am the primary income in our home, so that is causing us stress, not to mention Mickey still trying to complete his dissertation, proposals and interviews for jobs. He has an interview on Friday with one of our top choices (pray that goes well too). Unfortunately, my Noah Bear, my dog who has been by my side for 12-1/2 years now, is nearing his end. He is getting worse and I know a decision needs to be made, but I am just not in a good place for that right now...I knew this would be our last year, but with Auguste, and hydrops, the thought of doing this right now is distressing. Like I said earlier, living moment to moment and day to day is not easy at all.
However, if I have learned anything through all of this, it is that this little life inside me, and these children bickering at my feet, are the most important thing in the world. It doesn't really matter where we end up, as long as we all end up there together.
I decided to add some photos of them from grandparents day, because I like photos even when they don't have to do with the thing I am blogging about.