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.