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! 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 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.