Tuesday, August 31, 2010

Intervention? Not Now.

With each passing day, I look at Caleb with total and complete awe. I remember all the time I spent in utter anguish after hearing the initial prognosis. I remember having such a difficult time imagining my life and the future of this child. I remember wondering if he would live or die and knowing that it was completely out of my hands. I remember Divine Mercy Sunday, when I gave it all to God and chose to have complete trust in His Divine plan.

I am so happy that I let the Lord in to my heart to take away the angst and fear and replace it with peace and joy. How many months would I have wasted on worry? Without a doubt, our lives were still thrown into complete upheaval, and even with the trust I had, it was a difficult time. The point is that I was still able to find comfort in God's will and let Him envelop me in His arms; bringing me hope. I want everyone to be able to experience the wonders that I have in the past few months. How blest I have been!

Caleb continues to be a challenge in his "clinginess" but life is so beautiful! I remember what could have been and I whole-heartedly accept the little extra I have to put into caring for my son. He is such a gift! He is starting to give me social smiles and make eye contact.

He had his physical and developmental therapy evaluations with the state's early intervention program today. Apparently, Caleb has increased muscle tone, which is common with neurologic disorders. It means that his muscles are unusually rigid and he seems strong for his age (but stronger than he should be, which isn't as good a thing as you would think.) Basically, if he's lying on his back and you pull him up by the arms, he keeps them slightly flexed when they should just flop straight out. Babies aren't supposed to be able to do that. It's not that he "can't" straighten his arms; it's just that the tension in the muscles is too tight.

Another thing the therapist noticed was that Caleb tends to tilt his head to the right and his gaze tends to be usually set to the left. Again, it's not that he "can't" tilt his head to the left or look to the right, it's that he has those preferences, which are unusual with most babies, but common with ones who have neurologic issues.

These three abnormalities aren't really serious and don't require any therapy at this time. The therapists will be re-evaluating Caleb in three months, but as for now, they are very pleased with his health. Neither therapist noticed any other strange behavior and they assured me that he is right where he should be with his milestones. It is truly amazing! God is protecting him and using him to show the world that He is there and He is listening when you pray!

Friday, August 20, 2010

A Month of Beauty

Yesterday, Caleb had his 1-month checkup at the pediatrician. Once again, the doctor said he looks amazing. His head is 38 centimeters, which is perfectly average. When the doctor laid him on his belly, Caleb arched his back and lifted all 4 limbs off the table as well as his head. The doctor said that is very good for any baby to be doing at that age.

Caleb weighs a whopping 9lbs 12oz, which means that he has gained nearly 3lbs since leaving the hospital, just over 3 weeks ago! The doctor said that the rate he is growing is outstanding. He said that usually breastfed babies gain weight much more slowly. I explained to him that this is because Caleb is always at the breast! It is actually getting to be a little difficult for me to run the house and take care of all the tasks I need to complete. Sometimes he will nurse for 45 minutes and then want to nurse again an hour later! I'm not sure if he has a good appetite or if I am just a human pacifier to him. I think he may be making a habit of "comfort nursing." This is a challenge for me, but I love nursing him so I suppose I'm okay with it.

One of the reasons I think he might be "comfort nursing" is due to colic. I'm not sure if I would call it colic or gas or just a strong desire to be in my arms for security. He is a really fussy baby. It is stressful for me when I try to leave him with his dad or with a family member just so I can run errands or do something for myself. I will nurse him before I leave and I will come back within a few hours and everyone tells me that he cries the minute I step out the door.

I have explained the need for patience to my husband and family members that watch him for me. After all, Caleb could have a raging headache every moment of the day and he can't tell us that it hurts; he can only cry. Maybe he is just colicky or gassy. Maybe he was traumatized from all the tests performed in utero. I have heard that studies show ultrasound can be frightening to a preborn baby, especially if it is performed during the last trimester. Caleb certainly had his share of lengthy ultrasounds so maybe that is the reason he cries constantly; because he is unsettled and he wants to be held and nursed for comfort and security.

Whatever the reason, Caleb is high-maintenance, but I am dealing with it. I certainly love him just the way he is and I am willing to do whatever he needs me to in order to make him feel better. He is such a pure, beautiful joy to have and hold! If I had no other responsibilities, I'd hold him all day out of desire!

Wednesday, August 11, 2010

Waiting for Nothing

Caleb is exactly 3 weeks old today. We have been to 2 visits with the pediatrician since we left the hospital. Caleb has gained 1and a 1/2 pounds since his discharge and his head circumference is completely average.

The pediatrician said that if I hadn't told him anything about Caleb's brain, he would have been none the wiser. He sees no difference between him and any other normal, healthy child. His reflexes are perfect, he moves all limbs. His eyes and ears look great; his heart and breathing sound normal. He continues to eat every 2 to 3 hours and he is sleeping well. He is starting to hold up his head by himself! He is very strong!

Caleb stays awake and alert for longer periods of time, during which he likes to look at people's faces with curiosity. He is so beautiful I want to cry.

We will be going to the pediatrician again next week as well as the hematologist for his lab results. In a few weeks he will see the pediatric neurologist. Things are going so well and there is such a peace in my heart. I love my son more than I ever knew I could.

Wednesday, July 28, 2010

Home Sweet Home

Last night, we came home with Caleb. I cannot even begin to express the relief I feel; being able to sit and nurse him in the privacy of my own home. He isn't hooked up to monitors, there aren't any nurses peeking over my shoulder, it is quiet. He kept me up all night and I didn't care. Andy will be home with us for the rest of the week and I know we will enjoy this time together as a family.

Caleb is nursing eagerly! It is so hard for me to look at him and know that his brain just isn't right. He looks so beautifully perfect! He seems like a healthy baby and shows no signs of defect. Upon his hospital discharge, the nurses warned me that it is only a matter of time before he starts having seizures. They said it could be days or weeks or months or years, but it will inevitably happen. I know that this is probably the case, but look at how wonderfully God has blessed us this far? I know in my heart that all things are possible and that Caleb may never have the symptoms we expect.

At the same time, I know that I have to keep a watchful eye and I know that I have to take it one day at a time. I know that Caleb may still have these medical issues, but I am not going to bank my money on it! Like I said, what I have already witnessed gives me the hope I need to raise this child up and allow God to work miracles through him.

I will be forever grateful for all those who have prayed and believed in God's mercy. So many people have carried us through this ordeal and given us the strength through prayer to live another day with a smile on our faces. And now, here we are, holding a tiny miracle in our hands. He is proof that nothing is impossible with God.

Monday, July 26, 2010

The Unexplainable

Today is Monday and Caleb is 5 days old. Since his birth, he has had a brain MRI, an EEG, an echocardiogram, and bunch of blood labs drawn. Then today, I was sitting in the NICU at his bedside, waiting for the neonatologist to come by so I could ask her about discharging him, and the most interesting thing happened to me.

I was told that the only test we were still waiting on was a test to make sure Caleb's retinas were intact and developed normally. Supposedly, when there are abnormalities of the frontal lobes, there are often also problems with the retinas since they plug into those lobes. The eye doctor who performs the retina exams on neonates is one of very few in the area and he only comes to Rush Hospital on Wednesdays. I was irritated that Caleb would be sitting in the NICU, waiting for this exam to happen on Wednesday when he had already undergone all the other testing that they needed to do. I just wanted to take him home.

I was in a chair, nursing Caleb, when I saw an eye doctor going around with a nurse and performing exams on the babies in the room. I figured he was just doing regular, routine exams that are performed on preemies or something. When they had gone around the room and were wrapping up, I muttered under my breath "I wish my baby could have his eye exam done today." The nurse immediately looked over at me and asked what kind of test I was waiting on. I told her retinas and she said, "That's what we were just doing." I told her that the neonatologist had said we had to wait for a special doctor to come on Wednesday and she said that the doctor she was with is usually only in on Wednesdays but today was a fluke. She asked if I wanted to go ahead and have him examined right then. My jaw hit the floor!

Caleb ended up having that exam done 2 days earlier than it was supposed to be done. To my relief, after the doctor performed the exam, he declared Caleb's retinas intact and healthy! And finally, the testing was complete!

The MRI had confirmed that almost all of Caleb's left frontal lobe was malformed by the area of heterotopia, and some of it was actually on the right side as well. He was indeed missing his corpus callosum and there was dilation in the 3rd ventricle on the right side and the lateral ventricle on the left side. The neurologist actually said that the area they thought was a cyst looked more like a deformity in the flow between the ventricles. One new thing that they saw in this MRI was an area that appeared to be an infarct, which is a stroke. That is why the doctors ordered blood tests to be done to see if Caleb has any blood-clotting diseases and also an echo to make sure his heart was still in good condition. I was told that it is very rare for something like that to show up in a newborn.

Aside from the MRI results, all of Caleb's other tests came back normal. He has a perfect heart and retinas, and there was no seizure activity on the EEG. We will have to wait for the blood labs to come back because they take a while, but I am okay with that. He is miraculously healthy! The doctor said that he could see no reason why Caleb would have no symptoms with a brain like that. Can you believe it? He is 5 days old and appears to be perfect! I cannot even begin to express my gratitude and joy. We will be taking him home soon.

Saturday, July 24, 2010

Coincidence? I Think Not!

A strange thing happened to me while I was in labor. I had been having mild to moderate contractions every few minutes for most of the day on Wednesday. At 5pm my water broke completely and that is when the contractions picked up. They naturally became much more painful and closer together and in addition to that, the nurses began to increase the amount of Pitocin they were giving me to speed things up. That's when I cracked and asked for my epidural.

I was okay with getting an epidural, but it was ineffective when I gave birth to Imola so I was a little scared that this time around would prove to be the same. When I got the epidural, I felt less pain, but there was one area on the left side of my lower abdomen that I could still feel. The pain was strong, but it was manageable. The anesthesiologist kept administering greater doses of medication and he even tried repositioning my catheter, but to no avail.

As the nurses increased the amount of Pitocin I was receiving, the pain climbed up the scale. In a matter of a couple of hours, my pain had gone from a 6 to a 9 or 10 on a scale of 1 to 10. I was absolutely writhing in pain and the only small relief I could get was from an ice pack applied to my belly.

In the middle of this horrific pain, a person, strategically-placed by God, strolled into my room. The doctor who was on the labor and delivery floor that evening was one whom I did not know well. He was the doctor who I saw at my first appointment with the maternal-fetal medicine doctors, but I had never seen him again since then. I didn't feel like I had a relationship with him so I was a little disappointed that he would be the one delivering Caleb.

This doctor decided to come in and say hello since I hadn't seen him yet that day (the residents are the ones who take care of you most of the time.) So in comes the doctor as Andy is reading a book on the couch and I am in the bed dying in pain. After he said hello, he immediately asked me if I listen to Relevant Radio, which I thought was a very strange question.

If you have been following this blog from the beginning, you would have read an entry in early May in which I talked about calling in to a radio show called "Go Ask Your Father." I had gotten to meet Fr. Rocky, who is the host of the show, and he blessed Caleb in my womb. I told him I wanted to make a prayer request for Caleb on-air and he had me call in during his show to ask the 30 million listeners to pray for my unborn son.

Anyway, the doctor said the he was listening to "Go Ask Your Father" and he heard a girl named Heather describe the medical condition of her unborn son and ask that the listeners pray for him. He said that he immediately knew it was me because it was too coincidental for him to just see a patient with my name who was pregnant with a boy with these specific brain abnormalities.

Needless to say, I almost fell out of the bed! How is it that coincidentally, the doctor who I saw just happened to be listening to a radio talk show when I called in? I didn't even know he was Catholic let alone a fan of Relevant Radio. And here, this was the doctor who would be present when my little angel came into the world.

Andy and I knew right then that God had sent this specific doctor to care for me in delivery and there was a tremendous peace within our hearts. Now this peace didn't make the pain of my contractions go away, although I wish it had! Nonetheless, it still made me feel so much better.

Thursday, July 22, 2010

My Miracle

My son, Caleb John Paul Moreno, was born last night at 10:40 PM. He was 7lbs, 6oz and 19 3/4 inches long. Caleb was born "pink and screaming" as they say, and he looked like a completely "normal and healthy" newborn.

I was astonished as I took my first glimpse of him; immediately after he came out. He looked amazing! Even the doctor who delivered him said that he thought Caleb looked great. Even though I was told before that I wouldn't be allowed, I asked if I could hold him. To my amazement, the nurses from the NICU responded with "Sure! Why not?" They wrapped him up and handed him over to me.

Upon receiving this tiny, beautiful boy, wrapped in a blanket with a little pink face peeking out, I broke into sobs of joy and relief. I could not believe that my angel was finally there in my arms; just moments after he was born. He looked perfect physically and had no seizures immediately as we had anticipated. His Apgar score was an 8 and then, a little while later a 9; which is excellent. I was blown away at how well it all turned out.

Now, here we are the next morning, and the NICU nurses that were with him all night said he had exhibited no signs of abnormality whatsoever. They said if they hadn't been told about his brain, they would have no idea why he was in the NICU.

God is amazing! Let me just say that I have never in my life seen a miracle like this. I know that miracles really do happen, but who am I that He would bestow such a wonder on me? Who am I that God would have mercy on my son? He is truly answering our prayers and I can't deny that.

Wednesday, July 21, 2010

Here We Go...

Yesterday afternoon I went to my 38-week prenatal visit. I had been having a suspicion that my water bag was leaking so I asked the doctor to check it out for me. There were no obvious signs of a tear, but just to be on the safe side, the doctor decided to do an ultrasound to make sure that I had enough fluid in there.

The ultrasound showed that there was 4 centimeters of fluid in my bag and there needs to be at least 5. The doctor told me that the normal amount of fluid is 8 to 10 centimeters. He said that it doesn't matter what the reason is for my fluid being low; I am full term and there is no need to continue being pregnant at this point. He said that it would be the safest to induce labor and deliver the baby before things get complicated.

Ha! Things "get complicated?" Well it is pretty complicated when you drop off your 3-year-old at the babysitter's house and drive to Chicago alone, only to have your "Check Engine" light come on en-route and your vehicle begins to make all sorts of funny noises. Then, you are told you can't go home because you have to get induced. So you call your husband and tell him to leave work, take your daughter to your in-laws and go home to pick up his stuff. Oh, and by the way, induction can take up to 2 days! How's that for complicated? "Honey, make sure you bring someone with to take home the van that is broken in the parking garage! And bring plenty of stuff to do because you won't be going home for a while!" Did I mention that today is Wednesday and Andy has a mid-term this Saturday? Complicated? I think so!

Ok...now that my rant is over; I am lying in a hospital bed attached to an IV drip with Pitocin (wonderful stuff...not!) and I also have a blood pressure cuff, a fetal heart rate monitor and a contraction monitor. I began this process last night at 6pm, which was about 3 hours after I was admitted. Oh, and I haven't been allowed to eat anything but liquids. That means Jello, broth, Italian ice and juice. Don't worry; I'm sure I'll keep my strength up for the next day and a half.

Tuesday, July 20, 2010

A Special Blessing

The last time I posted, I forgot to mention that Caleb received a special blessing this past Saturday. We were at a family party and one of my mom's friends approached me as I was talking to a friend of mine about Caleb's situation and the impending delivery.

I won't name any names, but I will say that this is a woman who I know pretty well and I would definitely not consider her a "flake." She suddenly jumped in to the conversation I was having and made a comment about something I had just said. Then, she asked me if I would mind if she prayed over me for Caleb. I never mind that kind of thing so I said it would be okay. What I didn't expect was that she immediately grabbed my arm and excused us from my friend who was still standing there. There was a sense of urgency in her voice and we walked quickly away to an area of the yard where no one was standing. As we walked, she told me that she had been given the Gift of Tongues last year and then recently, she was also given the Gift of Anointing. She said that God had spoken to her through prayer and instructed her to go out and heal and anoint.

Now some of you might think this is a bunch of crazy talk. I know that I used to think the same thing about people speaking in tongues and being given orders by God while they were praying. When I was a teenager a came upon several occasions where I witnessed someone speaking in tongues and I most certainly believe in it now. I also have seen people who I knew were "faking it" and I can see the difference. Also, God has directed me during prayer and I know that people really do hear His voice and follow His commands.

That being said, this woman laid her hands on my belly and closed her eyes and she began to speak in English. After a few moments she strayed off into this foreign tongue. She kept speaking for what seemed like a good 5 minutes or so and her voice became louder and then softened again. Caleb had been still for a long time and he suddenly began to move around; kicking vigorously.

She made the sign of the cross with her thumb on my belly and as she quieted, Caleb calmed down as well. It was beautiful! The language she was speaking sounded like no other I had heard, but it was rhythmic and soothing. I could feel the presence of the Lord all around us at that time and it was so peaceful.

When she was finished, the woman gave me a long, strong embrace and left me with a "God be with you." She told me that she had heard me talking to my friend as she was walking by and she suddenly felt an undeniable urge to pray over me. She said that she will anoint as God has instructed but the healing is up to Him. She is only acting as His instrument. What a gift that is!

I am so blessed to have Him showering blessings over me and Caleb. I know that even though I am anxious, He is there with me. I never feel alone. Really. He continually reminds me not to be afraid, but to remain strong. I am happy that some people listen to God's instructions and are brave enough to allow Him to work through them. This occasion is the perfect example of a time when a human being was capable of bringing the peace of Christ to someone simply by following His will and overcoming the fear to do so.

Monday, July 19, 2010

The Pressures of Decisions

A few weeks ago I sent out an email to all of mine and Andy's family. I specifically said that we don't want any visitors at the hospital when Caleb is born. When you add Andy's siblings, spouses and their children to mine and then you add our parents, you come up with a number close to thirty people. That is a lot of potential visitors, especially when you are expected to make personal and very private medical decisions that could mean the life or death of your child.

Don't get me wrong, I am happy that we have so many people who care about us and Caleb and wish to put in their opinions to help us reach the best-possible outcome. That doesn't mean that we will welcome their suggestions and advice, especially considering that we don't really share the same views in popular medicine.

I have already come to a point where I feel a lot of pressure in making a few decisions relating to Caleb and I just wish that everyone could put themselves in my shoes. I am carrying a baby; a baby that I have known for 9 months; a baby that I have already established an emotional bond with. I am coming so close to the inevitable...delivering him. He could come tonight; he could come in two weeks. All I know is that he will be coming soon. That means that the time is rapidly approaching when the decisions will have to be made. Andy and I will soon face the reality that our son might not live a long life or he may live a long and painful one. Caleb may beat all odds and do better than any of us might expect. The only thing I can guarantee is that we will learn the answers to our questions when he is here with us.

I cannot describe the bitter-sweet feelings I have regarding this anticipation. I feel like I am reaching the light at the end of a tunnel, yet I don't know if there is a monster waiting out there on the other side of it. The only thing I can do now is to trust in God and wait. I am still not afraid, but it is still extremely difficult to sit and wait helplessly for something to happen, knowing that you have not an ounce of control over the outcome.

It is a shame that people can't empathize with me in that I don't need any added stress right now. You'd think that everyone would try their best to just let me be, but somehow, that just isn't happening. To say the least, I guess I'm a little disappointed.

Sunday, July 18, 2010

It gets worse before it gets better.

I had a prenatal appointment this past Wednesday. It was my 37-week routine check-up. I also finally got a chance to go for a tour of the labor and delivery floor at the hospital and I got to go in the NICU. After talking with the nurse practitioners in the MFM program at the hospital, I have decided that I want to wait a little while before I give birth to Caleb. Here are the reasons why.

Firstly, I thought it would be a good idea to ask the nurses about holding Caleb when he is born. Up until now, I have had this hope that he would be born crying and breathing with a steady heartbeat. I thought that maybe I would be allowed to hold him for a little while before they take him away for all the tests and whatever else they have to do to him. The nurses assured me that I would not, under any circumstance, be able to hold him before he goes to the NICU. Even if he is born "pink and screaming" I would be allowed to give him a kiss on the cheek at best.

The nurse said that he might be breathing and in 5 minutes, he wouldn't be. She said that they just can't take any risks until they know for sure that he is stable. Now I am sure that any mother can understand the desire to hold her baby as soon as he is born. I believe in the bonding process and that it is important for both mother and baby. I also know that it is common for mothers who miss out on this bonding process to end up with post-partum depression...which I am at a great risk for anyway.

So I would like to hold Caleb close to my heart for as long as possible before they take him from me. There have been people telling me that it is all for the greater good and that Caleb will be in good hands. People are telling me to remember that they will need to take him in the beginning so that I can have a better chance to hold him later. Now I do realize that these things are true, but that doesn't really make it easy to accept it all. I know that when the time comes, I am going to be bawling. I know that I am going to be wondering if he will die before I get a chance to hold him...that would truly haunt me forever. I know that I have to surrender myself and all my desires for Caleb and his health, but it is going to be extremely difficult.

Then, there is the new discovery that was made in the last ultrasound. Up until now, we knew that Caleb had 2 separate issues with his brain. One of the issues is the heterotopia, which is the mass of excess tissue in the left-frontal lobe. The other issue is the absence of the corpus callosum and the presence of the cyst in its place. The doctors had noted that the right side of the brain appeared to be developing normally and they hoped that the right side would compensate for the left.

It has been explained to me that in recent weeks, Caleb has developed an issue with the right side of his brain. He now has moderate hydrocephaly, which means there is swelling in a ventricle. His right lateral ventricle is moderately dilated, and I have been told that this will require a shunt to be put in. This would be an entirely different procedure from the one he may potentially have on the left side of his brain, so now, we are talking multiple surgeries from the get go. Not to mention the fact that shunts that are required because of abnormal anatomy need to be in place permanently. Babies outgrow shunts and they also have a risk of clogging or malfunctioning and this means that he will have to have revisions throughout his life. Again, this is something new that I feel I need time to digest before I meet him.

I was worried about his head being too large to deliver and needing a cesarean, but that is no longer a major concern of mine. The doctor I saw this week said that he feels I will probably be able to deliver him vaginally since my daughter was such a large baby. He believes my pelvis can accommodate a head that is a little large in size, but if it doesn't work out, it doesn't work out. I guess I'm okay with that.

According to this doctor, the one who performed my internal exam, there are no "tell-tale" signs that I will be going into labor very soon. Like I said, now that I am in no hurry, that is just fine with me. He did say that things can change overnight so there are no guarantees, but obviously it is good to hear that I don't appear to be on the doorstep of delivery.

I'll be going again for another appointment this Tuesday. I am eager to hear what they will have to say about labor signs when I go in. It is bound to happen sooner or later, but I am just hoping for later than sooner.

Thursday, July 8, 2010

I Thought I Had Accepted All This, But...

It has been a long time since I have posted anything. I guess you could say that life caught up with me and I just got wrapped up with work and preparations for having Caleb. I really had nothing new to report until now.

As of yesterday, I have come to the realization that I have not accepted all of what is about to happen to me. I know that I have accepted what is potentially in store for Caleb, but I have made myself into an observer...an innocent bystander of sorts. I have not truly allowed myself to go into in-depth contemplation on what kind of labor and birth I will have. I guess a part of me felt like it would be selfish to consider the things that will happen to my body when the only thing that should matter to me is Caleb and his well-being.

Yesterday I had an ultrasound and prenatal exam. I was prepared to discuss the findings and I wanted to talk about the potential of having a C-section. At this point, the only reason they would plan on a C-section is if his head is too large to pass. I have been told at the last few ultrasounds that his head was a little large, but not excessively. I was also told that the state of his brain abnormalities hasn't changed. I guess I have been imagining that to be good news.

The reality is this; his head, at this point, is at the 95th percentile for growth. Yes, as you are probably thinking, that is alarmingly significant. The cervix only dilates to 10 centimeters in diameter and anything bigger than that won't fit through it. Caleb's head is 9.2 centimeters and I the doctors are certain that if he isn't born within the next week or so, it will grow to be too large. I am really not planning to have a C-section, but I have been preparing myself for the possibility.

I asked them if they would consider inducing me to prevent his head from growing too large. I am 36 weeks and 37 weeks is considered "full term." I would rather not be induced either, but considering the lose-lose situation of C-section versus induction, I prefer the latter. The problem is that they won't induce me either as their policy is not to induce before 39 weeks. This presents the problem of me not getting any say-so in my medical care. I feel it should be my choice if I prefer to be induced at 37 weeks or if I choose to schedule a C-section. We are pretty sure that if I make it to 38 weeks, his head will be too big and I will end up with a C-section anyway. I'd rather be prepared and at least be able to give vaginal birth a try.

I have come to the realization that this birth is going to be completely out of my hands and it is most-likely not going to go as I would wish it to. I haven't even met all the delivering doctors at the clinic I go to and that means I could end up with a perfect stranger delivering Caleb. Even the doctors I have met are strangers to me. I have never had more than 1 appointment with any of them so I honestly can't say I feel comfortable with any of them delivering my baby.

Again, I thought I had taken all of this into consideration and accepted it, but as it turns out, I was wrong. The only thing I have accepted is that Caleb will be taken from me when he is born and our relationship will suffer due to the time he will spend away from me in the NICU. I have not accepted what this situation means for me, as a patient.

Another thing I was supposed to do yesterday was go on a tour of the Labor and Delivery floor and the NICU. Neither of those tours happened. I have never even set foot inside the place my son will be cared for, nor have I met any of the neonatal staff. The nurse who was supposed to take me for the tour wasn't available when I was ready and there was apparently no one else who could take me. How disappointing. I am still not scared, but I feel so horribly unprepared.

On the bright side, Caleb now weighs a whopping 6lbs 13oz, which is nearly 1lb bigger than average for this week in pregnancy. He won't be as big as his sister (thank God) but he will still be a nice-sized boy. Unfortunately, I was told that the cyst in his head has grown as well. This was much to my dismay because I was under the impression that nothing was changing in the brain. At this point, I don't know the implications of the increase in size and it seems that the doctors have all assumed a "we won't know what any of this truly means until Caleb is here" stance and it is honestly getting me a little frustrated.

I understand that no one can predict how well or how poorly Caleb will do outside the womb, but all the more reason to get him out next week, right? I can say that I am ready to go...let's just pray that he is, too.

Tuesday, June 1, 2010

Antsy in Your Pantsy. Oh...and Crabby, Too.

I am now 31 weeks pregnant. I feel hot, fat and annoyed. I have finally reached the point in pregnancy where I am miserable and ready to deliver. Obviously, I know that Caleb isn't quite ready yet, but I sure am! I am waddling for Pete's sake!

In some ways, it is good to be able to just say I feel like any other normal pregnant lady. I am sweating even when I am just lying still in bed...even with my air conditioning on! It has been near or over 90 degrees every day for over a week now and I am starting to think that this is what summer is going to be like. So much for mild.

I have been having nightmares and waking up to go to the bathroom about every 2 hours. I am exhausted, but I can't sleep. All of these things are signs that I'm getting closer to the end; including the fact that I have an extremely short fuse these days. I always feel like I'm going to blow up at any minute...or cry. Stupid hormones.

Did I mention that Caleb doesn't want me to sleep? His favorite midnight past-time is kicking and punching whichever side of my belly I am laying on. So basically, he beats up the bed and it makes it extremely difficult to sleep. I can't even begin to tell you how fun it is to go to work in the morning when you haven't slept. I am just looking forward to my maternity leave, which begins in just six weeks. Boy, it couldn't be soon enough! Those six weeks will fly by, but right now it seems like at eternity. I'm glad I have Imola to take my mind off of how tired I am. I just wish she could share some of her energy.

Tuesday, May 25, 2010

Ultrasound Number....Who's Counting?

I had another follow-up ultrasound today. I also had my very first prenatal visit with the staff at Rush. I am 30-weeks pregnant and it is nice to be able to say that I am 3/4 of the way there! My appointments will be every 2 weeks now instead of every 4 and all of them will be at the clinic at Rush. I just can't wait to drive that far every other week (not!)

So I was very happy to hear that my weight gain slowed and I am back to gaining only 1lb a week. I am attributing that to my self-discipline in the "cravings" department...way to go Heather!!! My blood pressure was up a little, but nothing to be concerned about. Other than that, Caleb kicked the doppler again while they were listening to his heartbeat. I am thoroughly convinced that he hates being messed with in any way.

The ultrasound was short and to-the-point. I was told that Caleb now weighs a little over 3lbs, which is at the 47th percentile for gestational growth. It looks like maybe I will get a chance to deliver an average-size baby after all. As far as his brain is concerned, everything appeared to be the same as before. The doctor did note that his ventricles were a little enlarged, but I believe that one of them was enlarged when we had the MRI two months ago.

One other thing that made me a little uneasy was the fact that the doctor said his head size is about a week ahead of his body. If his head continues to grow faster than his body, I will most likely end up with a Cesarean...which I really would rather avoid. So I would appreciate the continued prayers that Caleb will grow well and his proportions will be normal.

I am totally feeling like things are good at this point. I am thankful that the situation doesn't seem to be getting drastically worse and I have an overwhelming sense of calmness. It must be all the blessings that are being bestowed on Andy and I since everyone has been praying for us. We are growing more and more excited to meet our little angel!

Tuesday, May 18, 2010

Rest-Assured...I'm in the Clear!

After 18 grueling, foodless hours, I completed my 3-hour Glucose Test. I don't know why they call it 3 hours, because it's actually 4! Little did I know, I had to have my blood drawn when I arrived at 9:30am, and then I had to wait for the lab to give them the "go-ahead" for the test. So I had to wait to drink the glucose solution until 10am and then they took my blood every hour at 11am, 12pm and 1pm until I was done. Boy was that rough!

Thankfully, everything turned out okay and I am not considered gestational diabetic. My blood sugar was slightly over on one of the draws, but you have to be over on at least 2 of them to be officially diabetic. Needless to say, I will be attempting to eat better and exercise more now.

I am so glad that this turned out well because I am SO NOT ready to deliver an 11 pounder! Lord have mercy on me! Let's just keep praying that Caleb will continue to grow at an average rate and end up being a nice 8 or 9lbs. That, I can do.

Thursday, May 13, 2010

Another Hurdle

Yesterday I had my 28-week prenatal checkup. Except for the fact that I knew I gained more weight than I should have, I thought things were going pretty well. Caleb has been moving like mad and I have been feeling good enough to eat non-stop.

Needless to say, the eating caught up with me and I was astounded when I learned that I gained 9 whopping pounds in the last 4 weeks! Ouch! I am now committed to eating less and eating better foods. I know I've gotten a little carried away with the liberties of a pregnant woman, so now it's time to shape up for the final descent.

Unfortunately the weight isn't my biggest hurdle. At 28 weeks gestation, women are required to take a glucose test to screen for gestational diabetes. Well...I failed. Just barely, but I failed! I had a feeling that might happen since diabetes runs in my family. An hour after drinking a sugary glucose solution, your blood sugar is expected to be 140 or lower...mine was 141.

Now I have to do a big test to confirm whether or not I really have gestational diabetes. This Saturday, I will have to fast for 8 hours and then go to the hospital and have my blood drawn. After they take that sample, they will give me that sugary glucose solution again (yuck!) An hour later, they will draw my blood again, and they will draw it again on the hour for the next two hours beyond that. You counted right...that comes to 4 needles in all and I am not looking forward to it! I am also not looking forward to the idea of not eating anything between dinner on Friday night and 1pm on Saturday. I totally feel sick when I don't eat!

Hopefully, the first test will prove to be a fluke and I will end up not having gestational diabetes. If I do have it, there will only be more complications in this pregnancy, not to mention the fact that mothers who develop gestational diabetes are much more likely to develop Type II Diabetes later on in life. Another concern is that my daughter was over 10 pounds and I didn't have gestational diabetes when I was pregnant with her. If I do have it, this baby is very likely to be much bigger than she was. I am hurting just thinking about it! I will do my best to stay healthy if you all do your best to keep praying!!!

Monday, May 10, 2010


Can I just tell you how awesome it is to have amazing women for co-workers? Today I was given a surprise baby shower by the women I work with. I was totally unexpecting and it made for a great experience!

Some people have been asking me what I need for Caleb because they want to buy gifts. Being that he isn't my first baby, I won't be having a shower with my family and friends. Since my last baby was a girl, I have nothing for a baby boy. I suppose I've been a little lazy with my preparations for Caleb. I am 28 weeks pregnant and I haven't even bought one outfit for him.

Procrastinator that I am, I would likely give birth to Caleb and still not have my house ready for him. It was definitely a big relief that my friends at work care enough to shower Caleb with gifts. Now I have less to worry about for my last trimester, and I couldn't thank these women enough!

Caleb now has clothes, diapers, bootie-rattles, mitts, snuggly toys (some that even play music) and much, much more! And Lord knows I ate a lot of the delicious food that my friends brought to the event. I can't believe I had no idea! Supposedly, there have been flyers floating around in my office for 3 weeks now and I never even noticed. Am I observant or what?

Wednesday, May 5, 2010

Prayers Across America

Yesterday I made a very important phone call. I called into Relevant Radio, which is a Catholic radio station that reaches 30 million people across America as well as around the world through their stream from their website. I called during the noon-hour, when their show called "Go Ask Your Father" was airing.

The host of this program is Father "Rocky" Hoffman, and Andy and I recently met him at a talk he gave in our church. Father Rocky listened to our story about Caleb and he told me specifically to call him on-air on Tuesday 5/4/10.

When I called, he let me talk a little about Caleb and his condition. It was fantastic to be able to put in a prayer request to all the listeners because I know that many of them will be praying for Caleb just as I asked. What a blessing to be able to reach that many more people and receive their prayers for Caleb! My heart is singing!

Father Rocky informed me that Caleb's due date, August 5th, is the feast of Our Lady of the Snows. He told me the story of the devotion to Our Lady of the Snows and he said that we should specifically ask her intercession for Caleb since his due date falls on her Feast Day. So I have begun to ask her to pray for Caleb as well. For those of you who don't know about this devotion, I urge you to search for it on the internet...it is an amazing story.

Caleb's army is most definitely growing and I have faith that God will hear our prayers!

Sunday, May 2, 2010

My Sixth Sacrament

A few weeks ago, a woman I know was telling me about her husband's experience with sepsis. He was very sick and he nearly died. When he was in the hospital, a priest came to visit him and give him a Catholic Sacrament called Anointing of the Sick. This is a special Sacrament that is given to people who are seriously ill and, most of the time, to people who are on their deathbed. Anointing of the Sick involves prayers, a blessing given as the priest lays his hand on the person's head, and then the person is anointed with a Holy Oil. The priest uses olive oil that has been blessed at a ceremony held just before Easter.

When this woman described her husband's experience, she told me that he said he literally felt a physical difference the moment he was anointed. He said it felt like the illness lifted from him and he immediately felt stronger. The doctors had told him that he was extremely close to death and he was fortunate to make it through that situation alive.

Well...as you can imagine, after she told me her husband's story, the woman suggested that I ask for Anointing of the Sick on Caleb's behalf. I had never thought of that possibility before. Caleb hasn't even been baptized yet and that is typically the first of the Seven Sacraments that Catholics may receive. Caleb isn't officially a member of the Catholic Church so I was sure that he couldn't be anointed with a Catholic Sacrament until he has been baptized.

I figured I may as well ask our Pastor, Father Brad, to see if it would be possible for me to receive Anointing of the Sick on Caleb's behalf. Father told me that anything that is done in good faith should be okay. He felt like it was perfectly reasonable for Caleb to receive this Sacrament since it is my wish for it to be done.

So, tonight I received my sixth Sacrament; though this is the only time I have ever received a Sacrament on someone else's behalf. I am so grateful for the Catholic Church and the awesome faith we share as a community! I can't describe the gifts that have been bestowed on me, Caleb and Andy; simply because of the prayers being said for us.

A few days ago we went to a seminar. Andy and I met Father Rocky from our favorite radio station called "Relevant Radio." When the seminar was over and we talked to Father Rocky, we told him of the situation with Caleb and asked him to bless him and ask God for healing. Father Rocky blessed Caleb at our request and he also told me to call in during his show when it airs. He said that we'd pray for Caleb on air and he'd request all the listeners to keep him in their prayers as well. Relevant Radio reaches 30 million people so I can't imagine the deluge of grace that is about to fall over Caleb and I!

I am so over-joyed at the idea of even more perfect strangers praying for my son. How generous people can be with what little some of them have to offer. Prayer is the greatest gift anyone can give Caleb at this time, simply because it is the gift with the most to offer.

Wednesday, April 28, 2010

His Beautiful Face

Yesterday, I had my four-week follow-up ultrasound. I was smiling and happy walking in to my appointment. I suppose I caught the nurses off guard because they were shocked to see me there alone. They were asking me how I was doing and if I brought anyone with me. I always feel like a celebrity when I go in there; the nurses are very personable.

I explained my emotions to the nurses. I let them know that there are a lot of people praying for us. I told them about this blog. I told them about giving it all to God and how joyful and peaceful I've been ever since. They told me that I am so lucky to be able to really accept this and be joyful right now. According to them, most women can't reach the state I'm in right now; especially not a mere month after they receive the kind of news I have received.

I do know that I am fortunate. But I am not "lucky" to feel the way I do; I am "blessed." It is because of all the prayers being said on Caleb's and my behalf that I am joyful and strong. I am blessed to have so many people who truly care about me. More than that, I know that Caleb is on a mission. It brings me peace to know that he has a purpose. The strength that he has brought to us is inspiring hearts and even helping people remember how to have faith and how to turn to the Lord in difficult times. Caleb has already established an army of "prayer warriors", and they are under his command. ;-)

The ultrasound results were just as we expected...the brain is the same. The heterotopia isn't growing or changing. His head size is still perfect in proportion to his body. His body looks absolutely normal in size and shape. He is nearly 2 pounds now. It is amazing how beautiful he is to me...my sweet little son.

The doctor was trying out some new software with the ultrasound equipment so I got some really awesome pictures. This was the first time I've had ultrasound pictures that were superficial. Instead of black and white photos that look like X-ray, I got photos of his face that actually look 3-D. He looks like his sister!

We will continue to persevere in our prayer and our hopes for Caleb's health. I am, however, staying grounded with the expectation that Caleb will have the handicaps that I was told about. In my mind, this doesn't mean I have given up hope, it just means that if things are better than expected, it'll be a nice surprise for me. Either way, I will love him just the same.

Sunday, April 25, 2010

Caleb Dances

There is no denying it...Caleb loves to boogie! Maybe he is only using two limbs; maybe he is using all four. All I know is that the child cannot sit still.

I have read and been told that babies are most active between 24 and 30 weeks. Being that I am now over 25 weeks, I am not surprised that I feel him. I am, however, surprised that he flips around so much that at times it almost makes me sick! I don't remember feeling this much movement when I was pregnant with Imola.

I guess I'm a little surprised that I feel him moving so much because I am aware of his abnormalities. I wouldn't expect a handicapped baby to move this much or to have movements this strong. I can actually see my belly move when he kicks! That doesn't usually happen until well into the third trimester.

It has to count for something that Caleb is moving so much. It makes me happy when I feel it because it makes me feel like he is just like any other baby. But then I remember that he is not just like any other baby...he is special...he is Caleb. I don't want him to be like any other baby; I just want him to be himself. Caleb, the swing-dancin' lad!

In two days I will go in for yet another ultrasound. I will get to watch him dance on a TV screen once again! I can't believe that I am actually okay with going to this appointment alone, now that I know there are so many people with me in spirit. Besides, what news are they going to give me that is worse than what I've already heard? I guess I can say I'm not afraid anymore.

Thursday, April 22, 2010

Myriads of Angels Surrounding Me

I cannot believe how many people are praying for us! My family, friends, coworkers and acquaintances have been passing the word about Caleb around and there are countless numbers of people praying for us. We literally have people praying around the country and around the world! It touches me to know that even strangers care.

I have estimated just the people I know of who are praying and it has to be over a thousand. Imagine the angels that surround me as I carry this precious child. It is no surprise that I have found strength, joy and peace...how many mouths and hearts have asked God to give me these gifts? I feel like a lighthouse, beckoning those in darkness. I feel like I can't contain my joy! I want everyone to know this feeling.

Those of you who are praying...please don't stop. You are carrying me through it all. The comfort I have found in knowing so many people are praying is unreal. And I can assure you that your prayers are being answered. I am aware that I will need to keep this spirit of strength and hope throughout the rest of this pregnancy. I have another three long months to go, and after that, the future is uncertain. The closer we get to the time when Caleb will arrive, the more stressful it will be. Now is not the time to say, "Oh, she's fine! I'll pray for something else now." Please continue to remember us in your prayers...you are doing a world of good!

Saturday, April 17, 2010

Keeping the Faith

It began to get easier...the commitment to faith and trust. At times I could feel myself being pulled into the mindset of despair, but it wasn't that difficult to pull myself right back out again. I was always conscious of it when I felt it coming on, and that helped me to not let myself give in. It wouldn't have been fair to Caleb.

Now, I hav
e always had the Catholic Church in my life. My mother is a woman of great faith and she tried to teach us as children that we should always give everything to God and let Him bless us as he chooses. She has always taught me to respect life from the moment of conception and because I understood and embraced this at a young age, I have always been unconditionally prolife. Not in a judgemental way, but with compassion and love for humanity.

Let me just say that it is easy for a woman to be prolife when she has never had an unplanned pregnancy or been pregnant with a handicapped child. Don't get me wrong...the "choice" of abortion was NEVER an option for me. I especially can't imagine making the choice to abort a child after you have felt him move inside you. What I am saying is that I actually found myself in a position that would cause many a woman to consider ending the life of her child. For once, I got to see it through their eyes. I cannot describe the pain in my heart when I thought of the women who have chosen death over life. How devastating and sorrowful it must be to feel that there is no other choice.

I have spent many hours imagining what it would be like for these women who feel like abortion is their only option. I have been blessed with such a strong faith that I know I will make it through whatever the future holds for Caleb, but what about the women who don't know faith? The women who have no strength? How terrifying this world must be for them? It is difficult to imagine.

This idea of what "choice" means for women like me just reconfirms my prolife stance. This cross that I have been given to bear is ultimately making me a better person and giving my life a joy it never had before. There is a blessing being bestowed on me now; one like no other, and it is because I choose Caleb. I know that these same gifts are awaiting every woman who chooses life. Sometimes it's just difficult to accept them.

Tuesday, April 13, 2010

The Amnio Never Lies

I called the nurse practitioners back on Tuesday morning. I had to leave a message and wait for them to call me back, but I was determined to get my amnio results. Luckily, I didn't have to wait long for them to return my call.

It was such a relief when the nurse informed me that the amnio results were in and everything came back normal. Whew! I couldn't believe I had let myself imagine the worst just the night before. She told me that it was routine to have a genetic counselor meet with anyone who was pregnant with a child with congenital abnormalities. She said that the counselor would discuss the potential of this situation repeating itself in my life or the life of a family member, however, from what the MFM doctors knew, they felt this was a fluke and was not related to genetics.

I had to call Andy immediately to tell him that we didn't have to worry about Caleb's condition being passed on again to another child. It was wonderful news because I knew I wasn't done having children; my heart was too big to not share it with more sons and daughters.

Once again, peace overcame me and joy filled my heart. I knew my son would live to be held in my arms! I knew that I would take him home from the hospital and we would live our lives with the joy of having him with us. I didn't expect him to be healed by another miracle, but I knew that it wasn't out of the question. I was okay with whatever God would choose to do with our lives. I was determined not to let go of my trust again.

Monday, April 12, 2010

A Newfound Joy

I woke up for work on Monday morning. I woke up with an immense peace and joy that I had never before experienced in my entire life. Yes, I did think about Caleb. No, I was not in a state of denial; I simply couldn't find an ounce of despair in myself. I was amazed at this feeling. It absolutely was surreal to me.

One thing I have never mentioned in my previous blogs is this awesome sign that God had given me. At several points between the Thursday I had the consult with the neurologists and the Sunday I had surrendered my sorrow, I had distinctly smelled the sweet scent of incense. No, it was not like the cheap incense you buy and burn in your house...it was the incense they use in Catholic churches for special occasions. I'm sure that many of you know what it smells like. Some people dislike it, but I love the way it smells. That scent has always made me feel like that is the way Heaven smells. The incense is used to symbolize our prayers rising up to the heavens in a cloud. I love to imagine my prayers rising to the Father in that cloud of sweet-smelling incense.

I knew in my heart that God had sent me this fragrance as a sign that He is with me. The first time I smelled it was in the parking garage at Rush as my mom and I waited for the elevator. I asked her if she was wearing some new fragrance or deodorant. I hadn't smelled it in the car on the way there, but it was so strong to me just then...in a parking garage of all places! She said she couldn't smell whatever it was I was smelling. It seemed strange to me then, until I smelled it again the next day when I was praying the Rosary. I smelled my rosary beads and there it was again, and that is when I realized that it had to be a sign.

Throughout the course of the day I had passing thoughts of Caleb. I had been asked a few times about how I was feeling and if everything was okay. The truth was that everything was as okay as it could have been at the time. I felt like I was just a pregnant lady, eagerly awaiting the birth of her son.

When I left work I checked my voicemail and I had a message from a nurse practitioner at Rush. She informed me that she had scheduled an appointment with the genetic counselor following my previously scheduled ultrasound in a few weeks. That is when I realized that I still hadn't gotten the results of the rest of my amnio. It was after 5PM and I knew I wouldn't be able to reach the nurses until the next day.

I let myself lose my trust and I began to panic. Why would a genetic counselor need to meet with me if there wasn't something wrong with the chromosomes? I went home and began researching X-linked chromosomal syndromes that pass from mother to son. I let myself run away with it and I began to imagine that Imola, my daughter, carried a syndrome that she would one day pass to her son. I began to imagine that I wouldn't have any more children for fear that I'd have another son and I would once again pass this horrible defect on to a child.

The internet provided me with terrifying mental images of the chromosomal abnormalities of my future children. I read of a syndrome that passes from mother to son and usually causes the baby to die in-utero. If the mother is a carrier, her sons have a 50% chance of getting that gene. I began to ponder the fact that my mom only had 3 living sons out of 14 pregnancies; 2 of them ending in miscarriage and the gender was never determined. I remembered that my mother only had one brother out of a family with 6 children and I knew my grandma had lost a few babies. I suddenly realized that there could totally be an unknown gene floating around my family and I would never have known.

All at once, I realized that I wasn't trusting in God's Will. I realized that I had let go of my trust as soon as I let myself worry. I remembered that I had made a commitment and I needed to stick to it. I never before realized that trust isn't something you declare at one point and it sticks around forever; it is a decision that you make every day of your life. It is a commitment that you make and it is something that you have to work on in order to keep it in your life.

I can honestly say that as soon as I made this realization, I decided once again to let God take it from me. I consciously began to pray the prayer of Divine Mercy. I opened my heart and once again, He came in and took away the fear. I went to bed that night knowing that everything was going to be okay, no matter what the amnio results were.

Sunday, April 11, 2010

Divine Mercy Comes from Only One Place...

For those of you who are not aware, the Catholic Church celebrates a feast day called "The Feast of Divine Mercy." This annual feast day is always celebrated the Sunday after Easter and it began through St. Faustina Kowalska, who was a nun with tuberculosis in the early 20th century. St. Faustina was blessed with visions of Jesus. He came to her delivering messages and she kept a diary of everything He said. The Church read and approved of her diary and declared her a saint in 1993. The reason she is responsible for the Feast of Divine Mercy is because Jesus repeatedly told her of His infinite Mercy and assured her that it was available to all who ask. There is a one-line prayer that we say to Jesus of Divine Mercy and that is this, "Jesus, I trust in You." Short and simple.

The reason I am telling you this is that I have always been a believer in Divine Mercy and I have always participated in the special services the Catholic Church offers on this feast day. As usual, Andy and I went to the church that was celebrating this feast and we participated in the special prayers, worship, Penance Service and finally, the Holy Mass.

Throughout the entire service I was thinking of Caleb. I was praying and asking God to have mercy on him. I was extremely emotional and fought back tears at many times during the celebration. At one point, I felt like Jesus was speaking directly to my heart. He was telling me that His mercy is available and He is ready to pour it like rain, down on our heads, down on Caleb. But He told me that I must first offer Him all of my suffering. He told me that unless I open myself up and truly have complete trust in Him, He cannot offer me the mercy I ask for.

I never realized until that moment that I really hadn't given everything to Him like I thought I did. I had been praying and asking God to give me the strength to accept His will. I had been asking others to pray for me to have this strength as well, but I suddenly realized that unless I surrendered everything to Him and whole-heartedly believed that He would take care of Caleb and our family, what good would all those prayers be?

So with every drop of sincerity, I prayed that prayer, "Jesus, I trust in You." I repeated it over and over in my mind and my heart. Suddenly, it was like a river opened up in me and everything I had inside poured out. I felt Him take everything from me; all the pain, fear and sorrow were gone. I walked out of that church feeling new and different. I felt only joy and no pain. It was incredible!

For those of you who don't believe...it is true. You may think I am lying, or crazy. You can think that if you want. But all I can say is that if you truly give Him a chance, God will absolutely change your life, your heart and your soul. I say this now with conviction because it happened to me. He makes all things new...

Saturday, April 10, 2010

The Aftermath of a Figurative Hurricane

I surprised myself by my ability to make it through the work day after learning the news. I had typed an email to our family that described the situation and filled everyone in on Caleb's prognosis. After I sent out the email, I printed it on a piece of paper so I could take it with me to work the next day. The last thing I wanted to do the day after learning my son would be severely handicapped was to repeat the story over and over again to all my coworkers. I knew it would be easier to just let them read about it and pass the paper to whoever else wanted the details.

One by one, my coworkers came to my cubicle, consoling me as best they could. Many of them were crying; all of them were offering to help in any way they could. I sat and cried in silence as I let them embrace me. I told them all that there was no way anyone could help me besides listening to my agonizing story and praying for a miracle. Let me just say that I never knew how amazing all the women my department were until I experienced their true care and concern regarding my crisis. I learned of their generosity, their faith, their strength and most of all, their compassion. True friendship comes through situations like these.

It was a difficult day, but I was happy to be surrounded by a blanket of comfort, and I was glad to be given a large load of tasks to complete as I knew that would distract me from my emotions. Throughout the long hours of that Friday, Caleb's prognosis began to settle in me. I wasn't "okay" with the news, but I was managing to swallow it down into the pit of acceptance. I even found myself laughing at times throughout that day; never forgetting my grief, but somehow allowing myself to put it aside and smile.

That evening, my daughter brought me more laughter. Over the course of the weekend, my husband and I discussed how our life together would change in the future. Through my tears I sorted it out. I let myself grieve once more. I let myself prepare for what I knew was to come; this road ahead was certain to be filled with struggles, fears and tears. But somehow, I managed to see with clarity the potential for joy. It was a distant thought; one that I couldn't quite imagine, but I knew it was there. I knew that God would get me through this as long as I turned to Him. I just needed to find my trust.

Thursday, April 8, 2010

A Sword of Sorrow Pierced My Heart

Let's just say that I was becoming all too familiar with the route to Rush University Medical Center. I had travelled this path many times in a short period of time and at this point, I could almost do it on auto-pilot. My mom and I partook mostly in mindless chatter during the 1 1/2 hour journey, but she didn't succeed in calming my nerves.

After waiting for a good 30 minutes, we were called to the room where they were holding our private conference. We were introduced to a room full of people. There were three nurse practitioners, one social worker, a physician liaison, the neuro-radiologist who read our MRI scans, a neurologist to help with interpretation, and the hospital chaplain. I was told that the neonatologist would be in a while later to discuss the role he or she would play.

We learned through this consultation that Caleb has 2 different issues with his brain development. He does, in fact, have a significant cyst in the center of his brain. The cyst in and of itself does not appear to be a problem as there is no blood flowing into it. It isn't growing or threatening, it just simply is present. The problem, however, is that it is present in place of another part of the brain. Caleb is missing a part of his brain called the corpus callosum. According to the neurologist, there is no way to fix it and there is no chance of it developing now. What is done is done.

The other major issue with Caleb's brain is the there is severe deformity in the left frontal lobe. The brain is made up of tissue and the entire left frontal lobe has a mass of tissue called a heterotopia. This is really just a mass of excess tissue that shouldn't be there, and as a result, it has overtaken the healthy cells and brain tissue on the left side of the brain. There are no other parts of the brain that are missing; just this mass that is preventing proper growth and function of the left side of the brain. The doctors couldn't say why this had happened, they could only promise that there was no way it will repair itself or go away...it just is the way it is.

Unfortunately, the doctors couldn't give us a guaranteed outcome of what these abnormalities mean for Caleb, but according to similar cases they have seen in the past, they were able to give us the following prognosis: Caleb most likely will have severe difficulty with speech and he may never be able to talk. He may also have issues with hearing and sight. The left frontal lobe controls the right side of the body so he may be paralyzed on his right side or have problems controlling that half of his body. He most likely will never walk. Because the left frontal lobe and corpus callosum both participate in cognitive skills and intelligence, Caleb is not expected to be able to reason or be capable of higher-order intelligence.

The most serious issue is that the absence of the corpus callosum and the presence of the heterotopia will most certainly cause Caleb to have a seizure disorder. The neurologist pretty much guaranteed us that this is absolutely going to happen. He is concerned that Caleb will not only have seizures, but because of the significance of the abnormalities, he may have uncontrollable seizures and a lot of them. These types of seizures do not respond well to medication and can ultimately cause damage to the healthy half of the brain.

We were told that in the future, we will be having another consultation with a neurosurgeon and a neonatologist. If the seizures are extreme and don't respond to treatment, the neurosurgeon most likely will want to remove some of the mass on the left side of the brain. This surgery, if it happens, would most likely be performed within the first days of Caleb's life and potentially may decrease the frequency/severity of his seizures, but it does not have a 100% success rate. He would spend months in the hospital following the surgery.

I cannot say how difficult this news was for me to swallow. I only know that unless you are a parent who has received news similar to this, there is no way you could even begin to imagine (nor would you want to imagine) how devastating it is for a parent to discover that her child would live with challenges like these. As of that day, I could honestly say that I finally knew what it felt like to truly suffer from a broken heart.

Wednesday, April 7, 2010

Patience for Patients

It was Wednesday afternoon and I still had not received a call from the radiologist. Being as panicked as I was, I decided to call the maternal-fetal medicine specialists to find out what was going on. I ended up leaving a message for the nurses to call me back.

Shortly after I left my message, a nurse called me back with the news. To my dismay, she informed me that they did have the results, but she wasn't sure what the implications were for the abnormal discoveries they had made. She also told me that the radiologist saw some things that they weren't aware of before. So, of course, I immediately began to freak out, imagining the worst...whatever that may be.

The nurse ultimately refused to give me the reported results and she suggested that I come in for a meeting with the neuro-radiologist, neurologist and neonatologist instead. Fortunately, there was another patient who had a meeting arranged with these doctors at 9AM the following morning. I was told that it usually takes up to weeks to get these three doctors together in the same room. She apologized for the short notice, but there was no way I was going to miss the opportunity for this meeting. I knew I would be allowed to take time off work to go, so I agreed to meet with the doctors at 10AM.

When I called Andy to tell him about the meeting, he immediately said there was no way he could make it to that meeting due to his heavy load at work. I knew he wanted to be there, but part of me didn't care who went with me; I'd go by myself if need be. I quickly made arrangements for my mom to come with, for moral support and potentially to drive me back home in case the news left me too disoriented to drive.

For the remainder of the day, I allowed myself to imagine what news I would be given in regards to the findings. I began to imagine that the MRI revealed uterine cancer and that I would likely die unless they treated it immediately. I imagined that there was some other problem with my own anatomy. I imagined that Caleb's brain abnormalities were accompanied by other severe and life-threatening abnormalities that failed to show up on the ultrasound. What could she mean by "they saw some other things that they weren't already aware of"? Once again, I knew it would be a long and difficult night with an abundance of nightmares and terrifying thoughts.

Tuesday, April 6, 2010

Calm, Cool and Collected

Tuesday morning I was once again en route to the Rush University Medical Center. I had recruited my sister to go with me just in case I received some bad news when I went in for the MRI. It was extrememly difficult for my husband to know he wouldn't be able to attend any of these appointments with me, but his guilt lessened when he learned that I would always have someone lined up to go with me in his stead.

I had managed to make it through all of my family's Easter festivities with a relative sense of calm. I had decided to be as accepting as possible and hope for God to have mercy on my son. I had fantasized that a miracle had taken place on Easter and Caleb would have no signs if any abnormality when I had the MRI. I had allowed my imagination to run wild.

As we entered the clinic we were informed that the fetal MRI equipment was working that day. At least I knew I hadn't driven all the way up there for nothing. Just moments later, I was being led to the registration area once again, and then on to the MRI center. I began to feel my nerves flaring up, but I reminded myself that I had to have strength in God's will. That meant I shouldn't be afraid...but I am merely human.

We sat in the MRI waiting room for what seemed like an eternity. There were a few other people in there with us and I remembered that I had been warned about emergency MRIs having the priority over scheduled appointments. I am normally, for the most part, a patient person, but considering the reason I was having this MRI, I was just anxious to get it over with.

I ended up getting in the "tube" more than 1 1/2 hours after my scheduled time. I was prepped for the scan with headphones, instructions, several blankets, and some scanning device that resembled a blanket precariously balanced on my abdomen. The technician informed me that the scan would take longer if Caleb moved during the process. I knew I would be in there for a while since it seemed as if he never wanted to cooperate during medical tests.

When people describe MRI tubes and say how extremely tight and scary they are, they aren't lying! I couldn't believe how tight it was! I closed my eyes and tried my best to forget where I was, but to no avail. Not long after being put in the "tube" I decided that I would pray the Rosary to keep my mind off my nerves. I didn't realize that I would be interrupted every few minutes with breathing instructions. I had been told that when they were scanning I'd have to breathe out all my breath and then not breathe for approximately 10 seconds. I didn't know how difficult this would be, nor did I expect to have to do it repeatedly for the entire hour I was in the MRI tube.

Just as I had suspected, every time the technician began a scan, Caleb would begin his jig. I ended up praying and asking God to make him sit still so the MRI could be completed in a timely manner. But Caleb just kept on dancing! When I was finally taken out of the "tube," the technician laughed as she told me that he really wasn't sitting still at all. She said that she didn't even think they got any scans worth studying and they had gone through the entire sequence twice! This was not comforting news.

My sister and I were told that we could finally go home. I was happy to hear that the radiologist should be calling me either later that day or, at the very latest, the following day. As calm as I was trying to be, I was still a wreck and I wanted the results immediately. I hoped that I would get that phone call soon, but I also hoped that the results would somehow be miraculous.

Friday, April 2, 2010

Let's Hope It's a "Good" Friday

Friday morning finally came and my mother and I were headed back to Rush to have my fetal echo and fetal MRI. Two nights earlier, I had received the news that the first part of my amnio had come back with normal results. That meant that Caleb would not have the chromosomal abnormalities of trisome 13, 18 or 21. As much as this would put most mothers at ease, it didn't do much for me. What this news meant to me was that my son had issues with his brain development, but they weren't related to those chromosomes. It didn't mean that they weren't related to one of the other 20 sets of chromosomes; it didn't mean that he would be okay.

As I drove, my mom was telling me how proud she was that I was so strong. She told me how she wished she could have had that spiritual strength and trust in God's will when she had given birth to my sister 7 weeks early. I noticed that everyone kept telling me how strong I was, but it didn't make me feel any better really...it just made me feel like they were glad they weren't the ones in my shoes. I never resented their comments, but I felt numbness to their words. What they said didn't mean much to me. What meant a lot to me was that they were praying.

We arrived at the hospital and we were ushered to the registration desk. I was given my written orders for the tests I would be having and we were led down to the MRI area. My mom wrapped her arm around me in the waiting area. She assured me that God was in control and there was no reason to be afraid. Just minutes after those words came out of her mouth, the staff member who had led us to the MRI area came in and told us that they were having problems with the fetal MRI equipment. She told us that there was an engineer looking at it and we should just go have the fetal echo first. We were hoping that by the time the echo was completed, the MRI equipment would be fixed.

Before I knew it, I was laying on a table in a small, warm, dark room. I was waiting for the echo to begin. The technician was a kind woman who spoke to me about her children and grandchildren as she performed the test. We discussed what I knew of Caleb's condition and what I was hoping for as a result of the tests. She told me of her granddaughter, who had been diagnosed with a brain abnormality in-utero and was born healthy. For the most part, we were making small talk to try to get my mind off the situation.

I could feel Caleb moving during the test. He never wanted to be still when we needed him to be. The technician had told me it would take a long time if Caleb didn't cooperate. I was hoping that he'd calm down, but he was once again dancing his Irish jig.

After just 30 minutes, the study was complete. I was thrilled that the technician was able to finish so quickly, and I waited anxiously as the cardiologist reviewed the findings. My mother joined me in the exam room, and we didn't have to wait long before a smiling female doctor bounced in the room. She introduced herself and delivered the news that the findings were excellent. She assured us that Caleb had no heart abnormalities and we would never again have to come to the center for congenital heart abnormalities.

As much as I wanted to be happy with this news, I couldn't be. I had been told that the referring doctor didn't expect Caleb to have any heart abnormalities, and that we were just doing the echo as a precaution. I had set myself up to believe that this test would come back normal, so if it hadn't, I would have been devastated. I thanked God that Caleb had a good heart, but I was still afraid for his brain.

My mom and I were approached by another staff member shortly after we received the results of the echo. She came bearing the news that the engineer was still working on the MRI, and we could wait another hour or so to see if he'd have it up and running. She couldn't guarantee that it'd be fixed that day, but since we had come so far, we might as well wait a little while and see. We decided to grab some lunch in the mean time.

We were disappointed an hour later when we were told that the engineer had to order two parts that wouldn't be delivered until the next day. My mom and I realized that we had no choice but to reschedule the MRI and come back another day. It was Friday afternoon and we were told that the next available appointment would be on Tuesday morning. I quickly agreed to come back at the appointed time and I knew it would be a difficult weekend.

It was Good Friday. We were hoping to go home with good news and I guess we did in some ways. My husband was furious when I called him to tell him of the MRI situation. I explained to him that if God had wanted it to happen that day then it would have. I was amazed at my ability to remain calm and accepting.

Sadly, we would have no new information on Caleb's brain abnormalities to share with our families as we gathered together for Easter. We knew we would be anxious all weekend, but I also knew that somehow, God would allow me to still experience a peace-filled Holiday in spite of it all.

Wednesday, March 31, 2010

Good Grief

In case you don't know, the grieving process goes something like this: Denial, anger, bargaining, depression, acceptance. Over the course of the days since my ultrasound, I had gone through this process. The one thing that I noticed in going through these steps was that I completely skipped the stage of anger.

I have never been known to be an angry person, but I am aware that anger is common among people who do not understand God's plan for their lives. I thought I'd become angry as a healthy step of the grieving process, but it just never happened. Maybe it's because I refuse to blame myself, or God, or mankind. If there's no one to blame, there can't be anyone to be angry with; can there? This made sense to me as a reason to not be angry, but I later realized it wasn't the only reason.

The real, true reason I had for going straight from denial to bargaining, and completely skipping the stage of anger was simply this: I had people praying for me to be strong. I had people praying the acceptance into me. I knew that I had a long road ahead of me; one filled with suffering, stress, anguish and fear. But also filled with strength, love, joy and peace. I knew I'd be going through that grieving process over and over again, but I also knew that I would always, no matter what, skip right over the stage of anger.

Tuesday, March 30, 2010

Four More Days

While at work on Monday, I had received a phone call from a nurse practicioner at the MFM clinic. She was calling to schedule me for my fetal MRI and fetal echocardiogram. I was happy to know that there was a time slot available that coming Friday; that meant I only had to wait four more days before I'd have more concrete information of my son's abnormalities. I knew that every minute between the time she called and Friday morning was going to be riddled with worry. Needless to say I accepted the appointment time she offered me.

During my conversation with the nurse, she informed me that she still didn't have the results of my amnio and she assured that the clinic would call me as soon as they had them in. She also told me that I would receive a phone call from the radiologist who read my fetal MRI images the same day that the procedure was performed. I was thankful that I wouldn't have to wait until the report was finished, as that would take several days. The nurse said there would be a pediatric cardiologist to give me the results of my fetal echo within 10 minutes of completing the study. At least this was some good news for me as I was in such a need.

That afternoon, as I drove home from work, I called my husband to tell him about the scheduled appointments and I called my mom to see if she would go with me on Friday. She agreed to go with me and I suddenly began to feel a change in myself. I began to feel an understanding of this situation; a process that was about to begin.

When you learn that your unborn child has problems with his development, you grieve. Your mind goes crazy while trying to imagine what the outcome will be like. You wonder if he will die before he is born. You wonder if he will die in the first days of life. You wonder if you can handle him and his needs if he somehow survives outside the womb. You wonder what he will be like, and whether he'll be able to truly know you; whether you'll be able to truly know him.

At this point I had absolutely no idea what life had in store for me. The doctor had only told me of the suspected problems as he had no idea of the extent of those problems or what they meant for Caleb. I didn't know whether I should prepare myself to deal with a stillbirth, infantile death, or to be the mother of a handicapped child. I was overwhelmed with grief, guilt and fear. I wondered why this was happening to Caleb; to my family.

Was this all my fault? I have never been one to believe in blame. I have always felt that blame serves no purpose but to make people feel guilty. Humanity spends entirely too much time pointing fingers and not enough time figuring out how to fix the problem. But I suddenly began to have feelings of guilt. My body had somehow maimed my son.

Back to Work

Because of the many prayers that were being said on our behalf, I managed to drag myself out of bed on Monday and go back to work. It took me what felt like an eternity to get my daughter ready and take her to daycare before making my way to the office. Upon my arrival at work, I realized how much I didn't want to be there. I imagined just turning around and going home, but I knew that I must not neglect my responsibilities, and I had to tell my coworkers about my situation. Again, if no one knew what was going on, no one would pray.

As soon as I entered the office, I felt like I was going to cry. I made a point of not speaking to anyone, which was a dead giveaway that something was wrong since I am one of the most chatty people in our office. Two people asked if I was okay and I choked back the tears. I told them "no" and said I couldn't talk about it. I knew I had to break the news before they began to think I was crazy and tell me to go home.

I pulled aside my boss and asked her if I could speak to her in private. She immediately assumed a look of worry. The minute I opened my mouth to begin my story, I cracked and burst into tears. I uttered the words "there's something wrong with the baby's brain" and she didn't hesitate to wrap her arms around me and tell me how sorry she was. This is a woman who I've known for several years. She and my other coworkers all have a relationship with each other. We are all female and most of us are mothers. We are all nosey and get into each others' business, but at the same time, it is because we care about one another. I knew she truly felt my grief and I was comforted in the fact that I could count on her to understand my situation and be as accommodating as possible.

Shortly after I broke the news to my boss, I shared my situation with the rest of my office. I was touched by the fact that not only did these women care about my situation, but four of them actually cried when I told them about what I was going through. I was approached by each one of them coming to embrace me and share their comfort. Many of them offered to pray for us. What more could I hope for?

Monday, March 29, 2010

Coping With Personal Disaster

Let me just tell you, in case you don't already know, what it's like to truly feel yourself falling apart: You don't want to sleep but are exhausted. Your heart feels like melting wax. You just want to get to tomorrow, even if there's nothing to look forward to. You feel like you can laugh when something strikes you as funny, and yet you know that you could crack and end up bawling while you are mid-chuckle. You feel like you can't put sentences together so you can't really say what you mean. You wonder how any of this will ever get better.

This sums up my weekend of waiting. My husband and I felt it was finally time to share this dismal news with our large families. Considering that the two of us combined have a total of fifteen siblings, not including their spouses, this was going to prove difficult and filled with emotion. I knew that as tough as it was, we needed everyone to understand the situation.

Throughout the weekend and into Monday, I had witnessed many different reactions to our news. I saw fear, denial, curiousity, hope, pity, sympathy, and many more. But the one reaction that I longed for and didn't find was empathy. In order to truly experience and convey empathy, a person must first go through the same situation as another. I knew people who had children with special needs, and I knew people who had received bad news regarding the health of their child in-utero. I didn't, however, know anyone who could honestly relate in every way to what I was going through. I searched the internet for information on resources and support for families in our situation, but to no avail. I looked for books that had been written by someone who knew what I was going through, but I couldn't find them. And even though I had plenty of people around me who cared about me and Caleb, at times I felt utterly alone.

Let me just say that when people tell you that they know "someone" who's friend or relative was faced with a menacing fetal diagnosis and their baby turned out "just fine", that does not help a grieving mother one bit. The reason for that is simply that my child is unique as is every other child on earth. God chooses certain people to bless in different ways than others. God chooses to perform miracles on some people, and others are simply meant to be the way they are. My son is who he is. I love him no matter what is "medically wrong" with him. If the Lord chooses to perform a miracle on Caleb, that is wonderful. But I need to be ready to face the reality of whatever lies ahead of me. Believing in the miracle that happened to someone else's child does not give me hope for mine. My hope is in God's will.

As difficult as it was to accept this situation, I was able to overcome the grieving process. I am so thankful that we have the prayers of so many. I asked my family and friends to spread the word about Caleb because if no one knows, no one will pray. I asked God for the strength to accept His will and the guidance to turn to the right medical providers and support groups. I do not ask God for a miracle, because He has already given me one...my son's life.

All of this grief took place over the weekend of Palm Sunday; how appropriate a time. I can honestly say that I could feel the strength of all the people praying for us. I did have difficulty sleeping and functioning, and I did shed plenty of tears, but I knew in my heart that God was holding me and comforting me in His Holy embrace. I somehow managed to let the news settle in me and I knew that I had to pull myself together for the sake of my 3-year-old daughter. She still needed me to be her mother and I simply could not let myself slip into a deep pit of depression. She was one of the elements that forced me to bundle up my feelings and get on with my life.

Saturday, March 27, 2010

This Can't Be Happening to Me

What the doctor was about to tell me was certain to derail my life. I quickly pulled myself emotionally out of my mind, and tried my best to listen objectively and carefully. I was amazed that I was able to have an intelligent conversation about such a profound situation that would ultimately break me down.

I put on my stone face as I listened to the doctor tell me that my child did not, in fact, have a choroid plexus cyst. Rather, Caleb had a cyst next to his choroid plexus and it was much more "significant" than that minor cyst we had suspected. Now, the word "significant" can mean many things, but I knew that when used in medical terms like this, it mean "big, not good, dangerous, you are totally screwed."

In addition to the "significant cyst" the doctor noted several other abnormalities of the brain. He explained that the corpus collosum, which acts as a highway to pass information between the 2 hemispheres of the brain, appeared to be developing abnormally. He also told us that the left frontal lobe appeared to be developing abnormally as well. In addition to this semi truck of despair, the doctor gave us one thread of hope; after a thorough exam of the heart, it appeared to be normal. On this day, good news seemed hard to come by.

Needless to say, we were in shock. We had not anticipated such terrifying news. The doctor assured us that his team would try as best they could to give us a diagnosis and an accurate prognosis, but he explained that brain abnormalities are extremely difficult to judge. Many people with problems in these parts of the brain experience a wide range of symptoms. He explained to us that he felt it necessary to get more information on these abnormalities and then he could better explain the situation and the possible outcomes. He recommended that I have an amniocentesis, a fetal echocardiogram, and a fetal MRI in order to get the most information possible. I agreed to have all three of these procedures out of a desperate need to understand what to prepare myself for.

I didn't realize that they meant the amnio would be immediate, and before I knew it, I was approached with a clipboard and instructed to sign my consent to this procedure. It was all happening so fast. In marched the team of an assistant, the technician, a nurse practitioner, the doctor and his resident. With all of them squished in my tiny exam room, they began setting up viles, preparing a needle, applying iodine to my belly, and finally, performing another ultrasound in order to properly insert the needle.

My head was spinning. I told the doctor that I don't do well with needles and I looked up at the screen as he inserted it just below my navel. I couldn't believe that I could actually see the needletip poking through the uterine wall on the screen. I layed perfectly still as they drew vile after vile of fluid from poor Caleb's dreaming pond.

When they had completed the procedure and cleaned me up, the doctor went over the signs of complications to amnio. He rattled off the list as a stared into space, now concerned not only for Caleb's quality of life, but also for his potential loss of life due to my decision to have the amnio. I knew that I needed to have it, but at the same time, I felt like I added insult to injury.

I was discharged from the office with instructions to call the hotline if I noticed any of the warning signs they had listed. On Monday, I was to receive a call from a nurse who would set up my fetal MRI and fetal echo. Being that it was just 5pm on Friday, I knew it was going to be a long weekend of worry.

Friday, March 26, 2010

My Heart Broke on a Friday

There we were; my husband and I. Waiting to begin my Level 2 ultrasound at a Maternal Fetal Medicine Clinic at Rush University Medical Center in Chicago. My husband's optimism was almost getting on my nerves. He was arguing with me while we waited for the technician. He insisted that our son, Caleb, had this minor, choroid plexus cyst and that it wouldn't be a problem for him. I argued back that he shouldn't be so set on that outcome until he has more reason to expect it. I guess we all cope with stress in different ways.

Finally, the technician came in and began the ultrasound. We smiled as we got to see him, once again, bouncing around in his own private pond. He didn't want to stay still this time either. It seemed like every time the technician got him in a good position, he'd move before she could take a measurement!

She was able to go over all the parts of his body and confirm that his bone density was good, as well as his proportions and major organs. And then she came to the brain. I could see the same black mass on the screen that we had seen in our first ultrasound. I also noticed that she didn't pretend not to be measuring it as she knew we were already aware of it's presence.

After the technician completed the exam, she called in the Maternal Fetal Medicine (MFM) specialist to go over the findings. When the doctor entered the room with his resident, he stated that he needed to go over the brain once again since the technician noticed something that she felt he needed to see himself. The doctor looked at the head from several angles and was having a difficult time because Caleb continued to dance his Irish jig. He decided to take a break from looking at the brain and to get a look at the heart.

Again, the technician and doctor spent a lengthy amount of time studying the heart. I was beginning to panic. The heart? No one ever said anything about abnormalities of the heart! I watched his face as he stared at the screen; desperately trying to read his expression, but to no avail. I only knew that he was aware of something that I wasn't.

The doctor determined that in order to get the view of the brain that would be most useful, they would have to do a vaginal ultrasound. Apparently, Caleb decided he wanted to bury his head in my pelvis for a while in an attempt to hide from the doctor. After I agreed, they began the ultrasound once again and I saw exactly what they had been trying to get a look at the whole time. My son had a large black mass in the middle of his brain. I was alarmed as they measured it and discussed what they were looking at with each other.

When the exam was complete, the doctor finally explained to us what he had seen. I remember hearing the words at the beginning of his speech, "What I'm about to tell you won't be easy to hear..." and that is when I knew, without a doubt, that my life was about to change.

Saturday, March 20, 2010

In the Beginning...

Over Thanksgiving weekend in 2009 my husband and I learned that our trying had paid off and we were to expect our 2nd child. We were so excited that it was hard not to tell our families, as we wanted to wait until I had seen my midwife so she could confirm the pregnancy and give us a due date. We wanted to be at least 8 weeks along before we shared our news.

We ended up telling everyone during Christmas, and we were happy to learn that my sister and sister-in-law were both expecting as well. It was a joyous time for the family; to expect 3 new grandbabies/cousins all within 7 weeks time! My sister and sister-in-law were delighted that we could share in eachother's experiences. Pregnancy is often easier on you when you have other women to join you in the process of awaiting a baby. No one understands the difficulties of pregnancy better than someone who is currently going through it.

The first few months of pregnancy proved difficult for me; with nausea, exhaustion and hormone headaches. Not only did I have to get through these common pregnany symptoms, but I also had the added stress and worry that I would miscarry as I had once before. Though I knew this apprehension was irrational, I couldn't shake it and I spent many nights lying in bed, praying that God would let me have this baby. I began praying for my sisters who were pregnant as well; asking God to protect all pregnant women and their babies. My fears never disappeared, but they did subside as I reached my 2nd trimester and heard the baby's heartbeat for the first time.

Weeks and weeks had gone by, and with me having the latest due date, I was also the last one to have my regular 20-week ultrasound. My sister was eager to announce that they were having a boy! Several weeks later, my brother called with the news that they were having a girl! How thrilling all of this was for us. We became even more anxious to have our ultrasound and find out whether we would have another girl or our first son.

Finally, the day had come when I was 19 weeks and 5 days pregnant. We went in to our local hospital for our ultrasound and we discovered we were having a boy! We were so happy as we watched the ultrasound moniter. The technician pointed all the organs out to us and let us know the measurements of the baby. We got to see his tiny heart beat and watch him jump around in my womb; putting on a show for mommy and daddy. It is such a comforting feeling to see that your baby has all of his limbs and is measuring a normal size for that week in gestation. We were finally at ease as the technician moved to the last area of the body, the head and brain.

We were watching the screen as the technician measured the head circumference. I grew antsy since she seemed to be spending a lot of time on this particular view. I guess she could tell that I was bothered because she asked if I was doing okay and assured me that she just needed a particular view and he was moving too much to capture the still frame she needed. I watched her expression as she repeatedly leaned in toward her moniter and back upright again. I knew that the baby wasn't moving and that was not the reason she was studying the brain so closely. I felt in my heart that there was something more she wasn't telling us, and I knew I couldn't ask her about it because they are not allowed to discuss results with the patients.

After several minutes, the technician called in her supervisor to have her see if she could "get the view they needed." We waited as the other technician studied the brain and I noticed the same expression on her face that I saw on the first technician. I just knew that they were looking at something they didn't want to tell us about.

I was grateful that I had a prenatal appointment the next day. I knew that my midwife would certainly tell me anything she knew about the ultrasound report. She performed her routine exam and I told her of my ultrasound experience. She said she hadn't received the report yet, but she'd see if they would fax it over so she could put me at ease. She went to her office to get it and I sat alone in the exam room for what seemed like an eternity.

When she returned, she showed me the paragraph in the report where the findings were listed. To my dismay, she delivered some news that failed to calm my fears. She explained that the technicians noted some asymmetry in the baby's head. This suggested a thing she called a "choroid plexus cyst" might be present in the brain. According to her knowledge of this type of cyst, they are usually found to be harmless and most of the time, they go away on their own. Then came the unnerving part; though they are usually harmeless, they are sometimes linked to trisome 18, which is a chromosome that if defected, usually results in fetal or neonatal death.

My heart sunk, but I somehow managed to deliver the news to my husband in a calm manner. He did some research online, and found that she was right in saying it is rare to see the cyst cause a problem. To our hope, only 1 in 300 babies with such a cyst actually has trisome 18. He assured me that we should hope for the best because there must be a positive result for us in the future. In the mean time, I was supposed to schedule a Level 2 ultrasound at Rush University Medical Center in Chicago so a Maternal Fetal Medicine specialist could have a look at a high-quality ultrasound and give me his input.

Luckily, we only had to wait 11 days from the first ultrasound to the Level 2. It was still nerve-racking, but we grew to have faith in God to handle our situation for the best. We decided not to tell our family members and friends about the cyst until we had more concrete knowledge of it. We decided instead to tell everyone of the good news...we were having a boy!