difficulty getting pregnant, problems with pregnancy, delivery, her MANY health
issues, and what we are going through now. If I have told you this before simply
ignore this note. Or, if you have time to read and understand us a little more
then by all means please read on. Or, if you have wondered why my posts say what
they do then hopefully this will explain.
IN THE BEGINNING: Infertility
From the very beginning I know it would be hard for me to get pregnant. Call it a awareness of my own body, or just a hunch. We had been married one month and settling into our new apartment. I had started to unpack and needed to move a VERY heavy box. Lifted it and felt a sudden rip in my abdomen. I collapsed to the ground and literally laid there for at least 30 minutes before I could move. Moments later I unknowingly miscarried our 1 month gestational baby. I had no idea I was even pregnant and didn't even think it possible....but of course there was the wedding night. When all thoughts of "family planning" were not in mind.
After that I wasted NO time trying to have a baby. It first started with one year of doing nothing. Going about normal married life as most of us do. But after that time I was becoming more and more concerned and my hunch of infertility was becoming more of a certainty. So, I then went to see the first of 8 Doctors in the hopes of having a baby. The first Dr. tested me in every way shape and form. All to find there was nothing wrong with me. She sent me to her partner. He reviewed all her tests and decided to put me on a extreme diet to lose 20 lbs. Mind you at that time I was only a size 7. But, determined I dieted as if I was diabetic, ran a mile 4 times a week and did other muscle building training. After 3 months I lost 25lbs. The tests that were done after showed no change, and 6 months later I still was not pregnant. Then I was sent to a different doctor who specialized in unknown infertility. He re-tested me, and told me my infertility was all in my head. Yes, that is right....he said I was imagining my infertility into existence! Really?! I mean, REALLY?!
But, by chance I had started to feel a little From there we had to move to South Carolina for a new job for my husband. To be honest it was a really good move for me. While going through all these tests, Doctors, negative results, every other person I knew was having one, two, three, babies. I would hear some complain about the aches and pains of having children. Although they never meant to hurt me, every word was a stab in my heart. Then there was the occasional person who actually didn't want to be even BE pregnant. This was the biggest hurt of all. If only they could know the true blessing they had, what I wish I had. But, my heart was looking at it with an impure heart. I was jealous of them. I wanted what was theirs. I also was impatient and even frustrated with God.
But in mid December I began feeling a little off. I was nauseated at times, tired, and just not right. I took a pregnancy test just out of sheer curiosity and here it was POSITIVE! I could not believe it! So eager and excited I couldn't wait to tell everyone. So, on Christmas morning at my in-laws house I announced it to my husbands entire family that we were in fact pregnant! There was such excitement, even tears of joy! I was to have a blood test done that following week. Being so certain of the babies health I even went out and bought numerous unisex baby items. Then the day after my appointment I received a call from the Dr. saying I was in fact NOT pregnant! How could that be?! He then explained, I was pregnant in the technical sense but it was a blighted ovum. A pregnancy that had not enough DNA to be viable. I miscarried almost immediately. It was the hardest most difficult thing to have to tell mine and my husband's family. I was sad, and even ashamed. What was wrong with me? Why Couldn't I just do what every other woman in the world could do so easily?
I went to yet ANOTHER Doctor. This time he was my obgyn who also specialized in infertility. The cost wasn't nearly as much as a regular endocrinologist so I was game. He reviewed my very long extensive history and said he wanted to do more invasive procedures. I had a Hysteosalpingogram. Where they shoot dye through your reproductive system to remove any blockages or see if there is a defect. I was desperate at that point, and totally willing to do whatever it took. Some that I read about on-line said it felt like mild cramping. Others said it was worse then child birth. I went in thinking I would be in the middle since I have a pretty high tolerance for pain. The procedure itself only lasted maybe 5 minutes and it felt like hard labor pains that went on for all 5 of those minutes. Not fun. The worst part, oddly enough, was the pain I had at home recovering from it. In my mind it was worth it! The Doctor told me most woman get pregnant 1-3 months after this procedure. Of course months went by with nothing, no pregnancy. After 6 months waiting he sent me to yet ANOTHER Doctor.
I was very fortunate to get a job as a pre-school teacher where I could work with little children all day 5 days a week. This was exactly what I needed to get me through! There were dozens of little warm bodies I could hug, hold, and dote upon for hours!!!!! I treated each child as if they were literally my own. I worried for them, was proud of them, and eager for them to grow and learn from me! Of course there was always the evenings when I would come home. If my husband was out on a route I would be alone. We were in a new location so I knew no one. It was just me and my broken womb, or so I felt. Every now and then I would find a random toy car, or plastic bracelet a child from the day had placed in my packet for safe keeping. For a moment I would smile seeing the toy, thinking of which child it was who placed it there. But, then instantly be reminded of how that toy, something that brought such happiness to that boy or girl, was out of place there in my home. I had no child to use that toy. It wasn't where it belonged, and I wanted nothing more for that.
So, when I went to this new Doctor my expectations were low. I had reached the end of my hope. It had been 5 years and 3 months since I had first began this long journey. I had had 2 lost pregnancies and been through more tests then I ever wanted thought I would have to take. With my hopes at their lowest I did what I should have done 5 1/2 years before. I went to God for help. I had started to read the bible more, started to pray more, started to seek God. I came across two verses that radically change my life. The first was,
Genesis 30 : 22 "Then God remembered Rachel; he listened to her and enabled her to conceive. 23 She became pregnant and gave birth to a son and said, God has taken away my disgrace."
I prayed that night, I pleaded for God to remember me. I knew then it was only Him who could open my womb.
The second was,
1 Samuel 1:10-11 "And she was in bitterness of soul, and prayed to the Lord and wept in anguish. Then she made a vow and said, 'O Lord of hosts, if You will indeed look on the affliction of Your maidservant and remember me, and not forget Your maidservant, but will give Your maidservant a male child, then I will give him to the Lord all the days of his life,.."
I wept when reading this. Here was a woman who was feeling just as I was feeling, but she actually was able to find the words my heart didn't know to say. I prayed this prayer with every ounce of me. I knew God could give me a child. I knew that NO DOCTOR could help my get pregnant. I knew why there was no explanation for my infertility. Why nothing was working. God wanted me to FINALLY give up relying on man, and finally rely on HIM! (I am crying now remembering!)
That night I laid in bed thinking of what God could do in my life, the baby He could bless me with. In the stillness of the night I had a thought. I did not hear a voice, I did not see a bright light or a angel. But, I know it was the Holy Spirit placing a message in my heart. It said, "You say you want a child, but will you take one that was handicapped?" I was actually stunned by the idea. I had never even thought about it before. I took a moment and really thought it through. Could I deal with a child who was handicapped? I thought all the possibilities and yes I believed I could. And answered in my heart yes. But it was like another question more insistent. "What about a serious health issue?" I thought that through too. Serious health problems? Mentally handicapped? Then I thought about having that baby....and YES I would take a child any way I could get one.
I went to see that new Fertility Doctor. He looked over my history and was of course totally puzzled. He decided to start over. He re-took my hormone levels the very first Doctor took year 1. The results came back. I had a very severe thyroid issue. He explained the first Doctor must has over looked taking that specific one. He placed me on Thyroid medicine and a low dose of estrogen and literally one month later I was pregnant!!!!
ON TO THE PREGNANCY
I was over joyed! Every moment of every day was a dream come true! If I was tired I never complained. Aches and pains? NEVER! I was elated! But, due to my long history of failed attempts of pregnancy and 2 miscarriages I was put on the "high risk" pregnancy list. I was placed in the care of a special nurse, we'll call her "Ann". She was in charge of every thing for me. Any concern or issue I had went right to her. She relayed all information to my Doctor, scheduled my many appointments, and was basically at my beckon call. Ann was sweet, kind, and very informative. She seemed to know so much! She had me come for a follow up appointment with one other "high risk" mother to go over proper pregnancy care. She explained all that was needed, fluids, eating more, all the norms. But, then she asked me,
"Now you have had 2 miscarriages right?"
"Right"
"And your mother has had a history of miscarriages in the past?"
"yes"
"More then one?"
"yes" I replied, not knowing where this was going. What did that
matter now that I was pregnant?
"Okay, then you have what's called a blood clotting disorder which is causing your miscarriages. You're mother must have had it too. You will need to be put on a low dose of baby aspirin. It is VERY important you take it every day or else you may miscarry again." Then Ann looked over at the other "high risk" woman and said,
"Now you are NOT to take baby aspirin. In your case it will cause you to miscarry. But, she (meaning me) has something different."
I had no idea I had had a blood clotting disorder. I wondered at what point, at what test they noticed this. I thought, Oh well, at least I was in good hands and would not lose this one!
I was 1 1/2 months pregnant, taking my prenatals and baby aspirin like I was told, and went up to Ohio to visit my family to share the wonderful news in person. The night I told them was filled with such happiness but it was soon erased and replaced with sudden fear when I began to cramp and bleed. I instantly called the on call Doctor and told him what was happening. He said it sounded like I was miscarrying. That I should lay down and just wait. That night I was in excruciating pain. Pain so unnatural and intense. The bleeding was almost unmanageable, the pain brinking on unbearable. After 3 hours of the intense pain I had had enough. I actually just wanted it to be over with if it was going to happen. Slowly the cramping stopped, the bleeding stopped. There was nothing after that. No nausea, no tiredness. Nothing I had been feeling for weeks before. All little indications of my baby growing inside. I knew, my baby was dead. I returned home that following day and had scheduled an emergency appointment the day I returned. I sat in the waiting room and held my stomach. Holding on to whatever remained of this baby I so dearly loved already. (crying again reliving this) I went into the ultrasound room and told the technician of what had happened. She started the scan and I could see the form of what I assumed was the baby. She had a concerned look on her face and said, "Well, I can definitely see the trauma." She pointed to the screen and I saw a large white blob. She informed me I had hemorrhaged. She said it looked like it must have been very bad by the looks of it. "But, your baby still has a strong heart beat."..........Wait, WHAT?
"Did you just say you see the baby's heart beat?"
"Yes, listen" she said, and put the sound on.
There was a sound I remember hearing clearly even now. The wonderful little rhythmic thump of my precious baby, Still alive! I broke down that very moment. I sobbed and sobbed. I could not pull it together. That poor lady had to just sit there, medical tool in place (ladies you know what I mean when it comes to a early ultrasound) as I just cried and cried and cried. I apologized to the technician over and over in amongst choking gags.
My exam concluded and I was taken into the Doctors office for a review of the scan. He looked at my chart and was very concerned. He said it was apparent I had hemorrhaged. He informed me that luckily the hemorrhage was on the opposite side of where the baby had implanted. Had it been any where else I would have lost the baby for sure. He also said he didn't know why I hemorrhaged and asked what medicines I was taking. I told him just prenatals and the baby aspirin once a day. You should have seen his face. It was instantly shocked and stunned.
"Why are you taking baby aspirin?"
"Well, I was told to, by my nurse, "Ann Smith".
He looked at my chart and found where she must have documented it. I went on to explain, "She told me I needed to due to the blood clotting disorder"
He asked, "Why would she think you have a blood clotting disorder?"
I said frankly, "I have no idea, she just said I did"
He looked at me very serious then, "Well, you do NOT have a blood clotting disorder, I don't know why she said that to you. You need to stop taking the baby aspirin right away."
Then I knew, it was the aspirin that made me hemorrhage. The baby aspirin I was not to take, that the nurse Ann told me was so necessary for the safety of not miscarrying. I needed to know and asked if the aspirin is why I hemorrhaged. He said that most likely it was. But to just stop taking it and I should be fine. It comes down to this, she, in all her years of medical history took it upon herself to diagnose me. She never consulted with my Doctor, never ran a test. She simply took all the cases she had seen, mine must have been just like the others, and assumed I was like them. I never saw nurse Ann again after that. I was placed with a different nurse from then on. I assume she was fired. But, I still have no clue.
I left it at that. The baby was fine, I was fine I just wanted to move on. Every thing went on as usual. Felt good, felt tired, felt awful, but always felt blessed. When I was 3 months I was in such good shape they sent me to my regular Ob/Gyn. When I was 7 months my baby girl, Millie, was so large she measured at full term. I was every bit as huge as that sounds.
One night, while laying on my left side like I was told to do, I began feeling a growing pain. It was over my entire belly, over the entire baby. The pain got more and more intense as I lay there. It was so sharp, so unnatural. It reminded me of the unnatural feeling as the hemorrhage was, but a different sensation. There was something wrong with the baby and I knew it. I could feel her distress. I sat up, moved, and shook her but the pain would not stop. I laid on my right side, got up and let my belly hang. That pain lasted anywhere from 5-10 minutes, I can't remember exactly how long.But, Gradually the pain slowly went away. I sat and waited for movement from what was a VERY active baby, but there was nothing. No movement for hours. When I was certain, once again, my precious baby was dead she moved slightly. Ugh, relief! She was okay.
The next day around noon I felt a new movement I had never felt before. A slow very rhythmic pulse. It came from where I believed her feet must have been. It was not a hiccup, it was not her random kicking. It was something odd. That evening I felt it again. Day after day I felt this movement. Same time, same length of time, same strength. But a few moments after this odd movement my baby girl would move and kick again as normal, so I dismissed it to unknown pregnancy movements that every woman must get. I mean, who knows what goes on in there really?
Time came to an end and I began contractions.
THE SCARY DELIVERY
By the time it came for me to deliver Millie she was measuring as if I was having twins. I need to start and say that in my Ob/Gyn's practice there are 9 Doctors and8 of them said Millie would be too big for me to deliver naturally, that I needed a C-section. Only one of the doctors said that if I wanted to try to push her out I could. The night I went into labor I got that one Doctor who said I could try to push her out. Labor went normal, I got an epidural, which worked wonderfully, Millie was tolerating contractions fine, I handled them fine. I was in labor 20 hours, 6 of them was pushing. Yes, I pushed for 6 HOURS! That should have told me right there. But, I was still willing to push, and Millie was still fine, so they let me go that long. When her head came out, she got stuck. I honestly don't remember too much with this part. But, from Louie's point of view he said the Doctor had to literally hold onto Millie and dropped her entire body weight to the floor to pull her out. When she finally did come out she was purple/blue. She was not breathing, not moving, and was lifeless. They took her to the clean up area and there was no sound. Such a long time went by without a sound. I don't know for how long, at least 5-6 minutes. Then I heard a tiny little gurgle. They worked on her more. Such a long time more, then I heard actual crying. It was low and weak, but she was in fact crying. Oddly enough I wasn't worried, not one second. Some how I just knew she would be okay. I just had a peace. They gave her an Apgar score of 1 and If you know anything about that, then you know that is a terrible #. They told us the only reason they even gave her a 1 is simply because they were able to bring her back to life. Back to life! She was dead and I didn't even know it.
Of course they took her to the NICU right away, and wheeled me in to see her. She was already all hooked up. I couldn't touch her, couldn't hold her. I could only look at her for the moment. Then just a few seconds of beholding my little miracle they wheeled me away to the recovery room.
WHAT HAD HAPPENED TO HER
After Louie and I slept for 12 hours we woke and were very eager to see our new baby girl. He wheeled me down to the NICU and I excitedly held her for the first time. She was perfect, and then we saw her ear. They were going to run tests to see if it was genetic or not, but she was breathing fine, sustaining her temperatures, she had suffered from shoulder dystocia from delivery, but all in all seemed perfect to us!
The nurse asked if I wanted to feed her a bottle and I was thrilled to! After feeding her and burping her I just held her, taking her in. Then I felt, through her blanket, the same rhythmic movement from her leg I felt when she was inside me. I opened her blanket and saw her left leg pulsing. It was slight, and constant. I was shocked to actually see what I had felt 3 times a day for 2 months. I called the nurse over and told her to look what she was doing. I told her I felt her do that inside me for months and asked her if that was normal. I could see the look of concern on her face. She said no that it was not normal and it was impossible that I felt that inside me, that it was probably due to the stress from the delivery. She quickly took Millie from me and had us leave so the NICU Doctor, Dr. Owning
(best Doctor in the entire world in my opinion)
could look at her. I wasn't worried about it at that time. Mainly because she had had them all that time inside of me and was alive, so what would it matter her having them now? We went to sleep and at 4 am that morning we were flooded with doctor after doctor coming into our room. The leg pulse was Millie having seizures. I again told them I felt that in utero and they again said no it was most likely from the delivery when she was stuck, but they wanted to run tests to be sure and see what exactly was affected. Then the genetics Dr. came in. Said that Millie's ear was due to a genetic disorder called hemi facial Microsomia. It is a random genetic mutation. There is no rhyme or reason for it. It simply just appears. More tests needed to be done.
She was in the process of getting a MRI, C-scan, and EEG. The neurologist who was helping Millie had to put her on 3 seizures medicines all at one time in order to get the seizures to stop.
Then, after all the Doctor's had stopped coming in, and Louie and I were left alone, we sat together and soaked in all that they had told us about our new little baby. Her little body seemed so frail and compromised. The outlook for her life appeared to be full of complications and problems. We were heart broken for her. As a couple and as Millie's Father and Mother, we went before God and prayed for her.
In all our marriage we had never done this before. Never came together as husband and wife and knelt before the Lord. Louie sat next to me as I laid on the hospital bed, we bowed our heads and together prayed.
I believe that God will allow us to go through things in life. Some times they are horrible, tragic moments. But, I also believe that God uses those moments for His purpose and for His will to be shown. God is all powerful and able to do anything. So when I look back on all that had happened to Millie, I can now see what God had planned. Through Millie's complications God brought Louie and I together. We were dependent on Him, we as a couple, went before Him. Had we had a normal healthy little girl, that would not have happened. Also, God has since then used Millie's "issues" in numerous ways as a opening for me to talk to others about Him. About His blessings, His grace, His love. God has also used mine and Millie's story for this very letter. And I pray that it will speak to someone's heart.
I do not believe, however, that it was anything Louie and I had done wrong as to why this happened to Millie. This was not a punishment from God. I never have, or ever will believe that Millie's hardships were brought on because of God's wrath on us. I know this because it says in the Bible;
John 9:1 As he passed by, he saw a man blind from birth. 2 And his disciples asked him, "Rabbi, who
sinned, this man or his parents, that he was born blind?" 3 Jesus answered, "It was not that this man
sinned, or his parents, but that the works of God might be displayed in him.
It saddens my heart so greatly when I hear people say they think they are cursed. Or that we should be angry for what has happened to us. How can I be angry when so many wonderful things came of this hard ship. And I will say, even if no good came of Millie's problems, I am never going to be the one to question "why?" to GOD.
When we went to see Millie around 8 o'clock that morning it was a total shock. She was covered from head to toe in medical equipment. All that was left was her tiny little face poking out from under wrapped gauze, pieces of tummy and little parts of her arms. Wires, cords, stickers, tubes, bandages, all enveloped our little girl. We were told we could not hold her, could not feed, change, or disturb her. We met with the Neurologist a while later with the results from all the testing. Millie had severe brain damage. The scan showed old damage prior to her birth. Their scan can pick up damage that had been done up to 2 months prior, therefore, the seizures were happening while she was still inside me. I told the Neurologist about the night I felt the pain, then the rhythmic pulses after. She said it appeared Millie's brain damage was a result of no oxygen for a period of time while in the womb. At some time her cord was pinched and I was feeling her having the seizures while she was inside of me.
Then came the worst news a mother could hear. She gave us her possible prognosis for Millie. Where the damage was located was in the area where gross motor and verbal skills come from. She said Millie may never walk, never sit up, never be able to even eat on her own. She would basically be a vegetable, physically. There was some hope though, she was already taking a bottle well. She could move her arms and legs well, and was able to turn her head. She gave us more hope in that, a baby's brain is still very much growing. A lot of times, if there is damage, the brain will actually heal itself in a way. It cannot heal the damaged part of the brain, but instead re-route the necessary information. So instead of the motors skills coming from that designated area, the brain will have it come from another location. She said we would never truly know the extent of Millie's brain damage until there is more time and we just wait and see. They needed to keep Millie in the NICU until she was down to one seizure medication and no longer jaundice, but I was being sent home that next day.
So many people were concerned with my well being having just had the news of your new baby having so many medical complications and issues. But I can honestly say I was not sad at all. I mean, I hated that my poor little baby had to go through all those tests. And it was torture that I couldn't just BE a Mother yet. But, the fact of the matter was, I WAS a Mother now! I knew she would be in the best of care. That whatever the outcome was with her health, I would still have my baby. I would be the best Mommy to her I possibly could be and that is all that mattered.
MILLIE'S ROAD TO WELLNESS
The time had come for me to leave the hospital. It was such a difficult thing to do, leaving her there. After all, she was supposed to come home with me. But, even in that one day she was already showing another sign of her strength when I was able to breast feed her.
To help with my milk supply the NICU nurse gave me the blanket Millie had been using the 3 days, which had her scent on it. She informed me that prior to pumping if I smell the blanket a few minutes first, smelling Millie on the blanket with trick my body into letting my milk down.
Crazy how the body works like that right?
So, we packed up, said our good byes to Millie, knowing it would just be for a little while, and went home. But, the next day when we went to see her again I was still in quite a lot of pain from the delivery and oddly enough seemed to be in more pain then I had the previous day. I went and sat by Millie but as the time went on I felt worse and worse. Finally in a sudden wave I began shaking uncontrollably. I was so viciously shaking the NICU Doctor took me down to the prenatal ward himself. There I was diagnosed with swine flu. This meant that I was no longer allowed to see Millie while she was in the NICU. As long as I was sick I couldn't be near her. Louie was to go on a route that evening, so for 1 day Millie would be without anyone to see her. She would have no one to hold her, no one to sing or rock her. I just could not bear the thought of her going even one day not knowing that someone loves her.
So, with a bit of desperation I called my neighbor to help. She and I had only really spoken to one another on a few occasions, but she always seemed very genuine and willing to help if needed. I called her and explained to her the circumstances, and asked if she would be willing to visit her, perhaps hold her for a little bit. Janice agreed and I was so relieved! That next evening after she was to have visited Millie in the NICU, Janice gave me a call and told me about her visit with our newborn. Not only did she hold her, but she sang to her, rocked her, fed her and spent hours with her. My family is beyond grateful to our wonderful neighbor Janice. She was the loving arms that my daughter needed at that moment and I have been blessed to know her ever since. To this day Millie and Janice have a unmistakable bond and I am so grateful for it!
Millie stayed in the NICU for 1 week and 4 days.
She was down to one seizure medication, phenobarbital and was to take it 2x a day. But, with very strict timing. I was informed that Millie only had a 30 minute window to get her medicine or she may have another seizure or withdrawals from the medicine. The wonderful nurses (sarcasm here) decided to put her times to give her the medicine at 4am and 4 pm. So, many nights after she came home, she would wake for a feeding at 2:00am, be back to sleep at 2:40 but I would have to wake her back up at 4am for her medicine. But, the biggest challenge was how I had to give it to her. It was a syrup and I couldn't just give it to her in a syringe since it was too thick for her to swallow and she choked on it. I had to mix a tiny bit of my breast milk with the medicine. But if I gave the medicine/milk to her after she had eaten, a lot of times she was too full to take it and I ended up having to force feed it to her. So, to make things easier on me I placed Millie on a very intense and strict eating, and sleeping schedule. That way I had it timed almost precisely down to the minute when she'd eat, sleep, and receive her medicine. To help me keep up with it all, I made a dry erase board and checked off the time when she woke/ate and received her medicine and when she was to wake, eat and get her medicine again. I could not let her over sleep....ever! I could not feed her early or late. It was a very demanding schedule but a critical one she had to have.
To make it easier on myself I also decided to change the hour of giving her her medicine from 4am to 8am. That way I could give it to her when she woke and before bed. Problem was, In order to start her on this new time I couldn't just not give it to her at 4am and start at 8am, it would bring on a seizure. And, I couldn't give it to her at 4am and again at 8am she would over dose. So, I had to move her feedings and medicine times each day by 30 minutes increments. The first morning I gave it to her at 4am. The second morning at 4:30am. The third morning 5:00 am. And on and on and on.
The worst time was when she had the stomach flu and wouldn't keep anything down. I had given her her medicine and over and over she would throw it up. I was in a panic since the half hour limit was fast approaching and she still had not absorbed any of it into her system. I was relieved though when at the last moment she did keep the last little bit down. Then of course there was the time I spilled her entire bottle by accident. I sat on the floor with a syringe squeezing up drop by drop just to get her enough to last her through the weekend. It was all very stressful to say the least.. So that is the story with giving her her medicine.
Then there were the Doctors. When Millie came out of the hospital she had a total of 9 Doctors. There was her pediatrician, Neurologist, Genetics, ENT, audiologist, physical therapist for her shoulder dystocia, cognitive doctor (provided through kidnetics), plastic surgeons, one for inner and one for outer. That first month after she was born was a haze of appointments one after another.
At 3 months old Millie was making wonderful progress. She was smiling, laughing, and cooing. Her neurologist believed that her brain may have healed enough for us to reduce her seizure medicine. We took her off very slowly, just a tiny bit reduced every day. It was almost a week with her on a reduced amount when she had another seizure. I was holding her on my lap and we were both looking at our cat. I turned to her to see her reaction and noticed she was staring blankly at nothing. I remembered all the warning signs of a seizure and knew that was one of them. Her arms and legs were also outstretched and tight, and when I tried to bend them there was great resistance. I then tried to produce some kind of reaction from her just to be certain, something that normally would give me a reaction and pinched her thigh. Lightly at first, with no response and then a little harder but again she didn't move a muscle. The seizure lasted about 1 minute and when she finally came around the poor thing looked down at her thigh where I had pinched and started to cry. (Before anyone goes and contacts DSS, her neurologist recommended pinching her in case I thought it was a seizure and wasn't sure)
Her Doctor put her on a new medicine from then on that would grow along with her, Kepra. This medicine had no time windows which was such a relief.
It was at that time too that the medical bills came in. Her NICU bill was $63,000. Then there was my hospital stay, all these doctor appointments, and of course normal bills added on with having a new baby. I needed to go back to work. Luckily I was able to take her to the school I had worked at while pregnant with her and it was definitely bitter sweet. I did like having her so near to me, and I knew the woman who was taking care of her, Rae, was probably doing a better job then I could do. But, it still wasn't ME doing it. Luckily I only had to work 3 months to catch us back up.
Although Millie was ahead of all her developmental milestones (began walking at 7 months ) there were still some areas she was behind. I noticed something different happening with her. She was having strange anxiety unlike I had ever known a child to have. Simple things, like blowing your nose, would send her off into hysterics. Everything irritated her. She cried all day every day. Family members were actually scared to get too close to her since any little thing set her off. Another area I noticed a large delay was in her speech. She could say "Da", "Ma" and "Dah" for dog. But at 1 1/2 that was all. I could also tell that when I was saying words to her, like "Ball" she would focus intensely at my lips and say a garbled something. She never produced a single word that sounded like anything that it was. With this came the frustration and aggression. She so desperately wanted to be heard. It was like her little mind knew what she was saying, but couldn't understand why I couldn't. Soto help with that we started sign language. What a relief that was! At least that gave her a few more words into her vocabulary and I could give her the sense that I understood her.
Change up of Doctor's
When Millie was almost 2 a lot happened with her Doctor's. She began seeing a speech therapist and was diagnosed with speech apraxia (most are due to trauma to the brain). This is where the person understands a word and the meaning of the word. But the ability of the brain to produce that word is not there. In other words, she wanted to say the word "cat" but her brain would make her say "blah". However, her comprehension of what words meant was above her age level.
Then her Genetics Doctor informed us that Millie did not show any real signs of having hemi facial Microsomia, the genetic disorder he initially diagnosed her with. It was not in her DNA, and all cases will have other linking problems with the kidneys and the teeth. Millie had none of these issues. There then was only one other explanation for Millie's ear. The Genetics Doctor explained That if in development there is a large loss of blood, that part that is being developed would have complications. So in Millie's specific case, I hemorrhaged at 1 1/2 months pregnant with her. That is the time that ears generally grow. Millie's right ear did not get the proper amount of blood that it needed to properly develop. It ALL made sense then. Millie's malformed ear, her inability to ever hear out of it, was all due to the baby aspirin which made me hemorrhage. With this new news I asked the Genetics Doctor to PLEASE document this for me. But, fear that I would use it against that Doctor's practice, he refused. Because of that nurse Ann's diagnosis, telling me to take the baby aspirin thus causing me to hemorrhage, resulting in lack of blood for Millie's ear, Millie will forever deal with her ear being malformed.
We are grateful that by the age of 6 she will be able to have her ear fixed. It will be done in a 2 step process. First they will correct her inner ear canal that is currently shaped like a cone on it's side. They will widen it by taking a skin graft from her thigh. Then in the middle ear they are going to detach the 3 tiny bones, the arm, hammer, and anvil, which are fused together. This they believe will restore 80% of her hearing. In this same surgery the plastic surgeon will clip the top of Millie's ear freeing it from it's bent over form and reshape the cartilage so her ear is once again pinned back. She will then have a separate surgery to reconstruct the appearance of the cartilage to have a more oval look to it.
Besides her ear, and seizures we always were dealing with Millie's irrational temperament. We were so relieved when the day came when all that changed. It started when her neurologist wanted to try once again to take her off her seizure
medicine. She had to have another EEG to be sure this time that her brain had actually healed. When the results came back it showed her brain had in fact healed 100%. The scar tissue was still present from the initial brain damage, but the damage itself was healed. We immediately planned to reduce her medication. I was still leery about her being off the medicine. After all, she had had a seizure being weaned off her meds before. But, gradually she did come off the meds and then I noticed it, all the constant crying, the irritability she always had, all the hysterics were completely gone! Here all this time, it was the seizure medicine making her irritable. Kepra is actually known for this side effect. (Which I didn't know) I just didn't think it related to how she was behaving. I regained my sweet, calm, easy going little girl again. I could actually start going places, and our family and close friends noticed a big change in her too.
Worst day of my life
But then, in May of 2012, Millie had a pretty bad ear infection. She was lethargic and just not feeling great. We were in desperate need of food so I loaded her up in the car and took her to the store with me. She was drained of energy but still in a good mood. So, I got what I needed quickly and we made our way back home. I was driving on the freeway and coming towards our exit when I happened to look in the rearview mirror at her. She had her head slightly down, her eyes almost closed. I thought she might be about to take a nap. But then she didn't move. Didn't blink, didn't nod off. I sat at a red light and watched as her head then slowly tilted back. Her eyes were glazed over and blank and her face and lips slowly started to turn blue. Her eyes grew wide and rolled up into the back of her head. I yelled her name, "Millie," Trying to get her attention but she didn't respond. " Millie! " I screamed louder and still no reaction and she was even bluer, then panic took over and I screamed with horror as I was watching my child suffocating to death. "MILLIE!!! MILLIE!!!" Screaming, just screaming. No movement from her. She was gone. The light turned green and I need to go.....needed to go SOMEWHERE! I knew she was dying. I kept my eyes on her and the road. She was now purple, eyes rolled in back. I knew she was choking. I stopped the car in mid traffic. Got out and pulled her out of the car and laid her on the cement. I immediately tilted her head back to give her CPR but couldn't get any air in. I thought perhaps she had something lodged in her throat so I went to open her mouth but her jaw was clenched. I knew then, she was having a severe seizure and it stopped her breathing. There was nothing I could do. I just had to wait. Two woman got out of their cars and came to help. One was a nurse, all she had to do was look at Millie and said, "she is having a seizure, if she prone to them?" I said yes, that I knew she was.
It seemed like 20 minutes since the time she stopped breathing. But in reality it probably was only 3-4.
Millie's color slowly returned. Her eyes slowly shut, and she then reopened them and looked at me. I was in hysterics. I was sobbing uncontrollably over her. The nurse told me I could pick her up now. I grabbed her and my sweet darling girl actually patted me on the back, like trying to comfort ME! The other woman asked if I needed an ambulance but I said no, I was going to take her to the emergency room right away. I got Millie back into the car and wanted to rush home quick as can be to get a dose of her seizure medicine in her. The nurse, before we left, asked if she could say a prayer for us. What is the chance that of all people to stop and help us on the side of the road was a nurse who was also a Christian? No chance, that was God. We prayed together for safe journey, Millie's health, and the blessing of her returning to us. I raced home and Louie and I took her to the emergency room. She had spiked a high fever of 103 or higher and had a febrile seizure from it. There was no lasting effects from the loss of oxygen, and they sent her home. She was placed back on a preventative medicine, Topiramate, which she is on to this day. Millie's brain, although healed from her initial brain damage, is still sensitive. So things like, high fevers, stress, or extreme fatigue will give her a seizure. And unfortunately, seizures in her, make her stop breathing. Her neurologist said that people who stop breathing with seizing is only 10%! Millie just so happens to be one of them. This is why I am so paranoid about us catching sicknesses. I also go to extremes to make sure she is calm, and well rested. As I am sure any of you other Mom's would do too if this happened to your child.
So now we are up to date. Millie is still on her seizure meds, still in speech, but does not need to go the genetics Doctor anymore. She is still going to have her ear surgery when she turns 6, and we are just waiting on that. The one issue we are still dealing with, and aren't sure if it is neurologically related or not, is her social issues. Millie has always suffered from severe anxiety. Even after being taken off of the Kepra, this has not changed in her. Little things that couldn't phase us in the slightest will set Millie off into a panic. For example, when I try to put a shirt over her head, if even for a split second it gets stuck, Millie will lose it. I mean, she will flail, scream, cry, and just react in a crazy manner until she is freed. Then she will cry and cry and cry over the matter. To describe it does it poor justice. When I had to report it to her evaluator I could tell my words didn't get it through to her what I meant and the extent that it was. It was after a session out on their playground when she actually saw Millie go into a "red zone" as they called it. She then confirmed I had not explained it well enough to them what it is she goes through. The evaluator labeled it as extreme anxiety disorder. Millie, when in situations that scare her, even though they are minor things to us, are traumatically terrifying to her. She then goes into a "red zone" where there is no reasoning with her, no calming her, she is just wild in a sense to get away. Luckily it doesn't happen often, and I am learning the things that trigger it. But, what we are doing now is, she is going to occupational therapy to help her with her anxiety and giving her tools how to learn to cope with it. I too am getting tools to help her cope.
Otherwise, Millie is a little walking miracle. She has so many strengths. She is sweet, caring, very independent, and very intelligent. She has one of the best memories I have ever seen (apart from myself). She loves to learn, and to be given a challenge. I have recently discussed with her all that it took for me to have her. The problems with when she was born. I have told her about her seizures and why they happened. I have even told her about her ear and upcoming surgery. She has a very matter-a-fact response to it. When I show her pictures of when she was in the NICU with all the bandages and medical equipment on her, I told her how the Doctor said she may never move or eat. She just tells me with a huge smile, "But I move now!" and wiggles all around. And with that I believe she has over come more obstacles in her 4 years then most do their entire life. She is my daily joy, and my constant reminder of God's love.
