Maggie's Day

September 7, 2011 is a day that I will always remember as Maggie’s day. It is the day she surprised us all and decided to put me into labor. It is the day that I finally was able to hold my little girl in my arms. It is the day that she went to heaven. On the morning of the 7^th, I woke up with a sense – that mom sense that tells you this day will be different. I had been in a fair amount of discomfort since the night before, but didn’t really know what to think of it. The truth is I was under the impression that, because of Maggie’s condition, she would not be able to go into labor, so when I started having “labor pains” I thought it was just an extension of the discomfort I was having from the polyhydramnios.

Shortly after Charles had gone into work on the morning of the 7^th, I called him from home and told him that I thought I was having contractions pretty consistently. Thankfully I already had a bag packed for the hospital. Again, that mom sense told me to get a bag packed this past weekend. Charles and I even had the opportunity to buy a couple of outfits and hats for Maggie over the weekend.

By the time Charles arrived home, I was in a fair amount of discomfort (aka pain). We dropped Carson off at our friend’s house so he could spend the day playing with his sweet friends, Liam and John, and then we headed up to my doctor’s office. As we were driving to the doctor’s office, Jeremiah 29:11 continually ran through my mind – “For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you a hope and a future.” It is a verse that has been on my heart since Maggie’s diagnosis in June. It has always served as reminder to me that God’s plans are sometimes not our own. I have to remind myself of this verse every time I get in the minivan we had purchased shortly after I had found out I was pregnant with Maggie but before we had received her diagnosis. As I reflect on this verse now, I realize that God’s plan for Maggie’s arrival was perfect. Although not the way I had envisioned her arrival, I now cannot imagine it occurring in any other way. God’s timing is perfect. He had the right people in place for Maggie’s arrival today – from the midwife who so caringly delivered Maggie to the nurses and hospital staff that have taken care of us throughout the day.

When I arrived at the doctor’s office, my midwife (Christy), was able to see us right away. At the time, she could not check my dilation because my bag of my amniotic fluid was so big. She decided to do an ultrasound to see how Maggie was doing. Although I was in quite a bit of discomfort (aka pain) at the time, I was thankful to see Maggie moving around on the ultrasound screen and hear her heartbeat one last time. After the ultrasound, my contractions were coming very close together and so they were able to get me in a wheelchair and wheel me over to labor and delivery. Christy was still not able to check my dilation because of my full (oversized) amniotic fluid. I was concerned that my contractions were so close together that I would not be able to get an epidural, but thankfully they were able to get the anesthesiologist in pretty quickly to administer it (oh what relief that was). Right after the epidural was administered, we decided to go ahead and break my water so that we could check my dilation and assist Maggie into the birth canal. God’s provisions were at work. When they had done the ultrasound at the doctor’s office, Maggie was very active and flipping all around in my tummy—from head down to feet down to transverse (side to side). If Maggie had landed transverse after my water broke, the chances of having to have a C-section were much higher. Thankfully, she settled into a head down position when my water broke.  “Water breaking” is putting it mildly to say the least. Over two gallons of water gushed from me in a matter of seconds. For the second time that day, I felt a sense of relief. Christy was then able to check my dilation and came to the conclusion that I was fully dilated.

Christy then did an ultrasound to check Maggie’s position and heartbeat. Unfortunately, Maggie’s heartbeat could no longer be detected. We had been prepared for this, knowing that the drop that occurs after the waters break would not bode well for the delicate condition of Maggie’s head. Charles and I looked at each other and knew that Maggie had gone on to a better place. It was a moment of extreme sadness for us, but God was covering us with peace. His plan is perfect. Although we wanted so desperately to spend a few minutes with our little girl before she journeyed to heaven, we are thankful that we were spared from so many decisions that would have to be made with a live birth. Regardless of her condition when she was born, we knew once we checked into the hospital that organ donation would not be a possibility. An organ donor must be 8 pounds. Maggie weighed in at 2 lbs 4oz. Again, God gave us a peace about this decision – a decision that was out of our hands. If she was born alive, we would have had to watch her struggle for breath and decide whether or not to give her oxygen. If she lived for more than a couple of days, we would have to decide if and how to feed her. I thank God and I thank Maggie that I did not have to make these decisions.

Once my water was broke and I was fully dilated, I decided to wait a few hours before giving birth to Maggie. I wanted a couple of hours to rest up before the delivery began (giving birth can be an exhausting process). I also wanted to enjoy a few more hours with my little pearl tucked safely inside of me. I know that I was being lifted up in prayer throughout this time. Charles and I both felt a covering of peace and I was able to get the best sleep that I have had in weeks.

I began pushing shortly after 5pm and Maggie was delivered at 5:50pm. Throughout the delivery process the only people present in the room were myself (obviously), Charles, my midwife, and one nurse (Jennifer). I think Maggie appreciated the peace and quiet.

After Maggie was delivered, Jennifer cleaned her up for me and Christy tended to my needs. Charles was so wonderful throughout the entire process – displaying a strength and calmness that makes me so proud to call him my husband.

Before delivering Maggie, we had considered getting pictures of her without a cap on her head. However, the anencephaly was pretty severe and we decided to cover her head with a cap shortly after she was delivered. I am thankful that Christy, Jennifer, and Charles were able to see and assess her before I did to prepare me for her condition. However, a mother’s love transcends all imperfections. Maggie is beautiful – truly a rare and precious pearl.

Charles and I spent some time alone with our little girl. Memorizing every part of her – from her cute button nose, to her perfectly formed lips (courtesy of her daddy), to her delicate fingers and toes, to the cutest little tush I still have ever seen. We then had a photographer come in for Maggie’s photo shoot and are so pleased with the memories she was able to capture.

We then decided that it was time for Maggie to meet her family and friends. We secured her cap and wrapped her in a blanket to introduce her to big brother Carson. Carson was beaming with pride. We let him hold her hand, pet her tummy, and kiss her cheek. He did wonderful. One of my greatest moments of the day was having my two children in the same room together. After Maggie had a chance to meet everyone, I held her in my arms as I was wheeled to my recovery room.

I have spent most of the night holding her in my arms. She is wrapped up in an angel blanket and wears a pearl bracelet on her wrist. The joy of holding her in my arms outweighs the sadness of saying good bye. As I drifted off the sleep this evening, I envisioned Maggie entering the pearly gates of heaven, running into the arms of Jesus. Jesus introduces her to a new group of friends – babies who, like her, only know the joys of heaven. They are busy jumping on clouds and sliding down rainbows. Maggie is whole and Maggie is happy.     

Update

I wanted to provide an update about my OB appointment that took place on Friday and thank you for your prayers about the appointment. The doctor we met with seemed very supportive and understanding and will try to be available for the delivery (though that is not a guarantee). I am still measuring large and so will have to see a specialist to measure the amount of amniotic fluid in my quickly expanding belly. The doctor I saw today said that if the specialist is okay with it, then a delivery in early October is feasible. At that point, I will be 36 weeks and Maggie’s lungs should be developed enough to function outside the womb. I desire for Maggie to be able to breathe on her own because, if she is born alive, only comfort measures will be given as we spend whatever time we have with her. I scheduled an appointment with the specialist for next Friday afternoon. Please continue to pray that the specialist will be comfortable with me continuing my pregnancy for a few more weeks. 

After we left the doctor’s office on Friday, Charles and I met with Chad at Mays Ward - Dobbins Funeral Home to talk about final arrangements for Maggie. I know that it may seem strange or wrong that we are making plans to lay Maggie to rest before she is even born, but God continues to give us peace and assurance of His plan for Maggie’s life. I have complete faith and belief that God can perform a miracle in Maggie’s life if that is His will, but I also must remain obedient to what God has called me to pray for, and He has called me to pray for peace; therefore, I wish to plan accordingly. Chad was very compassionate and helpful as we have many decisions to make. We are thankful that we were referred to Mays Ward-Dobbins and are confident that Maggie will be treated with the utmost respect and care.

Stork Vision

On Friday we had the opportunity to take Maggie’s first pictures at Stork Vision, a prenatal imaging center in Atlanta. Shannan, the owner of Stork Vision, did a wonderful job capturing 3D ultrasound images of our little girl. We had been praying that the images would be clear and that Maggie would be awake during the appointment so that we could see her moving around. I gave Maggie a little pep talk and asked her to show us her best moves – and it worked (the chocolate chip cookie I ate right before the appointment might have had something to do with it too!). Maggie kicked her feet and moved her hands the whole time – she definitely likes to be in front of the camera.

I was a little bit apprehensive before the ultrasound because I didn’t know what to expect. I was afraid that it would be too difficult for me to see and accept the deformities of anencephaly. But when the camera was turned on and I saw my baby moving around on the screen, I can only describe it as pure joy. I loved looking at her chubby cherub cheeks and cute button nose. She even blew kisses at the camera. After Charles and I spent a few minutes taking in the sweet sight of our little girl, we invited Carson and my sister, Julee, in to see Maggie on the screen. I was really glad that Charles, Carson, and Julee were able to witness the kicks and the movement that I feel inside me every day.  

The weeks leading up to the ultrasound had been frustrating and challenging. This pregnancy has been physically demanding and mentally draining. I was beginning to doubt my decision to keep carrying Maggie. But when I saw my little girl dancing around on that screen, my resolve was renewed. I cannot imagine another path and am so thankful that I am still caring for Maggie.

Praying hands.

I think Maggie is signing "I Love You" but we just can't see her thumb.

Isn't that the cutest little tush you ever did see?

SSSHH.... we are being too loud!

Feeling Discouraged

When we first learned of Maggie's diagnosis, I knew that God wanted me to pray for peace and I asked our friends and family to join with us in praying for that peace. God did and continues to hear those prayers. There are moments of sadness, anger, and frustration but the moments of peace, laughter, and just plain normalcy far outweigh them and for that I am very thankful.

 However, today was one of those tough days. I had an OB appointment today and I am so thankful that Charles was able to accompany me to the appointment. Charles and I have been researching and talking about different aspects of Maggie's birth and we were eager to talk to the doctor about them. One of the main items that we were hoping to discuss with the doctor was the possibility of donating Maggie's organs after she passes away. As we have researched anencephalic babies as organ donors, we have found that the possibilities of doing so are slim --- very slim ---- needle in a haystack slim. There are numerous factors that are taken into account before organ donation can be considered. First, an organ donor baby must be born alive, her lungs should be developed enough to survive outside the womb, she must be a certain birth weight, and numerous other factors. There are also certain ethical implications to consider, namely, the "dead donor rule." An anencephalic baby is not considered brain dead because the level of consciousness that they experience cannot be determined and no baby less than 7 days old can be labeled as brain dead. We understand these ethical implications and agree with what that research says. That being said, the organs of anencephalic babies often begin shutting down before brain or cardiac death can be determined, making the organs unfit for transplant. Although there is much we still have to learn, we do understand that allowing Maggie to be an organ donor will be highly unlikely, almost impossible, but we still do believe there is a chance and right now we are praying for that chance.

The doctor that I saw today did not offer much hope for organ donation and was not able to provide us with any more insight about it. It was very deflating. The doctor also suspects that I have polyhydramnios, a condition whereas my uterus is holding an excessive amount of amnio fluid. This condition occurs occasionally with anencephaly because the baby is not able to swallow amnio fluid like healthy babies do. I had been researching polyhydramnios and had suspicions of it myself. I have felt "larger" at 30 weeks with Maggie then I did when I was pregnant with Carson. I have also had intense back pain -- at 5'2" an oversized tummy is tough on the spine. I also have had a couple bouts of nausea over the last several weeks (another sign of polyhydramnios). So while I do not disagree with the doctor's diagnosis, I was frustrated when he implied that I should consider going ahead and inducing labor. I get frustrated when scare tactics are used or when my wishes are ignored. While I have felt supported in my decision to continue carrying Maggie by a select few in the medical field, I have also experienced the proverbial eye roll by others. I realize that I am not a medical expert and I do trust medical professionals, but I also have to be Maggie’s advocate. From what I understand, polyhydramnios can be managed if it is not too severe. My doctor asked me to see a specialist for a full diagnosis.

Even though it was a tough day, I know that God will restore peace and give comfort. I ask for your continued prayers in the following areas:

First, that God will give us wisdom on how to proceed with the diagnosis of polyhdramnios. We are praying that the diagnosis is minimal and that I can continue with the pregnancy without any additional risks.

Second, that I will feel supported by my doctors in our decision to continue carrying Maggie.

Third, that organ donation is a possibility, as rare and unlikely as it may seem.

 Finally, please continue to pray for our sweet Carson. This evening Carson told us that he learned the sign language sign for “family” at daycare today. After he showed us the sign, I told him we were a family – Carson, mommy, and daddy. He then walked over to me and patted my tummy and said “Maggie too.”  I said “that’s right; Maggie is part of our family too.”  Maggie is lucky to have such a wonderful big brother!   

Pictures

  

I thought that posing for some fun pregnancy pictures would be a great way to continue celebrating Maggie's life. Carson sported his Big Bro t-shirt while my sister and brother-in-law snapped away. Thank you Aunt Julee and Uncle Michael for the photo shoot! As my tummy continues to grow, I hope to take a few more pregnancy pictures along the way. We also plan to get 3D ultrasound pictures of Maggie. We can't wait to see her dancing around!

Charles and I continue to appreciate the love and support of so many. We recently returned from a trip to St. Petersburg to visit my family and were encouraged by all the support and prayers from my hometown. I did tell Charles that this will probably be my last road trip until Maggie is born. An eight-hour car ride reminded me of the many aches and pains associated with pregnancy :)

Pulses and Pizza

I just wanted to provide some updates about our appointments this past week. We were very pleased with our meeting with Beth, a nurse manager for labor & delivery at Kennestone Hospital. Before meeting with Beth, we assumed that we would just go over the hospital's policy and procedures for cases like Maggie's. We were thrilled when we arrived at the hospital and Beth had arranged for us to meet with not only her, but also with an advanced nurse practitioner a doctor, and the nurse manager of the neonatal unit at the hospital. Between the four of them, they were able to answer all of our questions and they all demonstrated caring and compassionate hearts. They were very patient with us and spent more than an hour with us as we talked about our birth plan. I just hope that we don't get billed for this ad-hoc consultation :) Beth then took the time to give us a tour of the facility and the accommodations that will be available to us when I deliver Maggie. As we were leaving, Beth said that she will be happy to answer any questions we have in the coming months and she also said that she will be praying for us. Charles and I feel very confident that both me and Maggie will be well taken care of at Kennestone.

On Wednesday, we all went to my monthly OB appointment. We decided to take Carson so that he could hear Maggie's heartbeat. My health is good and Maggie has a strong heartbeat :) Carson could not believe how loud Maggie's heartbeat sounded with the Doppler. My midwife said that as long as I can feel Maggie moving about every 24 hours, then I can schedule my next appointment four weeks from now.

Over the last couple of days, I have been struggling with how to approach talking to Carson about Maggie. From the beginning, one of our prayers has been that Carson would be spared from the sorrows that we face. I am thankful that he is at an age where he will mostly likely not have a complete understanding or memory of our time with Maggie. However, I was reminded in a very poignant way that he DOES have a very tender heart bent toward his little sister.

I was sitting on the couch reading a book to Carson when he started to "tickle" Maggie. We both laughed and enjoyed the moment. Then, as a way to test the waters, I said "Carson do you know that we get to enjoy having Maggie for a little while and then she gets to go to heaven." He stopped what he was doing and looked at me very seriously and said "but mommy, I will miss her." Of course my tears began to flow and Carson, being the sweet and loving boy that he is, grabbed my face and began kissing my tears away.

Just this evening, as we were eating a pizza dinner, Carson proclaimed that he liked pizza. I told him that I liked pizza too and then he said "oh, and Maggie likes pizza also" (for some reason, "also" is one of his favorite words). Then he said, "Mommy, can I hold Maggie?" I told him that he can't hold Maggie right now because she is still in my tummy. Then he said, "Well, then I can just rock you."

That moment provided me with a good laugh, but at the same time, sent a dull ache through my heart. I am struggling and second guessing. I want Carson to know and love his little sister, but am I setting him up for disappointment and heartache? We need wisdom and clear direction about how to celebrate Maggie's life with our sweet little boy. Please pray for wisdom.

Tummy Tickles and Dancing Feet

It was almost one month ago that we first learned of Maggie’s diagnosis. I can remember everything about that moment and I am sure that it is a moment I will never forget. While I think about the diagnosis often, I don’t dwell on it. I am learning to enjoy the moments I have with her now.

Carson is a great big brother and enjoys tickling my tummy and says that he is tickling Maggie. I tell him that, even though we can’t hear her, I am sure she laughs just like he does. Maggie is an active girl and moves around a lot in my womb. I have particularly noticed distinct movements in the vicinity of where I think her little feet are located. I can only assume that she is having herself a little dance party! I am also convinced that Maggie is a cat person. Our cat (named Hopper) enjoys curling up next to me on the couch in the evenings. I think Hopper realizes that Maggie is a pretty special baby and likes to curl up next to my tummy to be near her. Often times, Maggie will begin moving around as Hopper stretches out next to her. Some may call this a coincidence, but I don’t think so.

We have a couple of appointments for Maggie over the next couple of weeks. On Friday, we plan to meet with a hospital administrator at Kennestone where we will be delivering Maggie to talk about birth plans and accommodations available at the hospital. I have my monthly OB appointment next week. These appointments are primarily made to make sure that my health throughout the pregnancy remains stable (blood pressure, weight check, etc.…). The doctor will also use a Doppler to check on Maggie’s heartbeat. I ask for your prayers that these appointments go well – that the hospital administrator will be able to answer all of our questions and that when my doctor check’s on Maggie’s heartbeat that it will be strong.