I got married and my husband and I had, what I thought, was mostly a happy marriage for seven years. During that time we had talked about children but had not done much about it. My biological clock was ticking and when I finally mentioned at 33 I wanted to have a child again (since my oldest children were 12 and 14) my husband thought I was crazy. I convinced him it was a good idea. Isn't that what women usually do? We had infertility issues. I figured it was me since my mother was told at a young age, 24, that she was not going to have any more children (my sister was a big surprise...lol).
So we went to an infertility specialist that helped me get pregnant. John was there with me all the way. We only did
ONE IUI with infertility drugs and a trigger shot! John would give me the intermuscular shot because I was too chicken to do it to myself. He was there to give a sperm sample. He signed off on it before it was injected into me. He was there when he heard the risks. We were only given a 7% chance of having triplets or more (for quads we were told a 3% chance) IF I even got pregnant from that cycle. There was only a 20% chance of the IUI even working because of my age (34) and
PCOS!
Were we lucky? It is hard to say. My husband separated from me back in July. He says there are a lot of reasons but I say the decline of our marriage started with the birth of our quads. The babies arrived early because of
pPROM. We had moved back to my family home, Alabama, from Nevada because I knew I would have to quit my job and we would not be able to afford things. My family said they would be there to help as they could. Little did I realize that was not going to be a lot of physical help, like I needed. They were very generous in giving us financial help though. I do appreciate it greatly on that end! Our lives were in a freefall! The babies were born 13 weeks premature. I had to have an emergency C-section because I was telling the nurses that I thought I was having back labor but the monitor was not picking it up. I found out later it is VERY common for the monitor NOT to pick up back labor. When the contractions were so regular I could time them I told the nurse they HAD to call the doctor. The doctor said to check me. When they did I was 5 centimeters dilated. Margaret (Baby A), whose water had broke, was all ready in the birth canal! I was prepped for surgery. We were told John might not be able to be in the operating room because there was not enough room for him. Can you believe that!?!? There were over 30 people in the room waiting for the delivery of the babies. I was having trouble with the anesthesia and I was not able to see their birth. They were all immediately whisked away to the
NICU.
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| Martha Renee |
After John got into the NICU and took a few pictures of the babies he came back to my hospital room. I was in pain and having a hard time moving but I was doing okay. I was trying to relax for the first time in a month and a nurse came in and said one of the babies was in distress and the doctor wanted us in the NICU right away. She asked if I could make it and I said yes. I thought it was going to be Joseph. We were told he was not going make it and die in utero. Then we were told he had a low volume of amniotic fluid and he was curled up in an C-shape at the top of the uterus so if he did survive he would be deformed. It was a MAJOR surprise when I found out it was Martha who was in distress. She was the second largest baby of the group and I had never entertained the thought of her passing away. I cannot retell this story. You can find her story
here.
I was devastated! We had a social worker form the hospital tell us not to bury her yet because there was a high probability of losing another one of the babies. I called my parents, who live about an hour away, to come to the hospital because Martha had passed away. I thought they would have hurried and come right away. Surly, my mother knew I was in distress! She took an hour getting ready and then she stopped by Wal-Mart for 90 minutes picking up crap to make a door wreath for my room before heading to the hospital. Just a mere
3.5 hours after I called they arrived. I had to cry and hold my dead baby in my arms with only my husband, who was in as much shock as I was, for company. It hurt me to the core when my family did that.
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| James and Margaret when they first got home |
Then over the next three months the children were released from the NICU. James was first. He got out about two month after his delivery. Two weeks later Margaret followed. Joseph was in the NICU for three months and it seemed like there was a three month time limit because all the sudden they kicked him out. He was only a little over four pounds when he came home! He had only been off oxygen for three days! When James and Margaret arrived we were up for the challenge. We kept the babies on the NICU schedule of feeding them every three hours around the clock. They were just shy of five pounds when they came home so they still needed to gain weight. We were tired when Joseph arrived but we thought we could handle it. All the offers of people volunteering to help never appeared. So John and I were basically on our own. To my mother's credit she did try to help but she could
not sit still. We tried to keep the house rather quiet and like a NICU environment. Quiet and dark. Yet she insisted on puttering around the house cleaning and disturbing the babies. We also asked
everyone who visited that they had to wash and sanitize their hands. The children came home during the height of cold, flu and
RSV season. I was scared they would catch something. My mother, at the time the babies were born, had my nephew. She had raised him because my sister would just runoff and leave my nephew with her for MONTHS on end. Since my nephew was in a daycare I said she could not come over if my nephew came with her because I was worried about the babies catching a respiratory illnesses. Keep in mind my babies spent a lot of time in the NICU on respirators and were being see by a pulmonologist because of it. My mother was offended and said she would not come over then because she had my nephew.
John and I were VERY tired but making it. The first night home with Joseph was traumatizing though. Thank god the hospital REQUIRED parents of NICU children to take CPR before they could take their child home. Even though it was apparently not written down in the medical records the nurses had mentioned to us that Joseph seemed to reflux. I had asked the nurse the day he was discharged if he was taking his 4 ounce feeds without a problem and she said yes. I got him home and I fed him that night. I laid him on the bed with John and the other two babies while I went to rinse out his bottle. When I walk back to the bed Joseph was starting to turn blue and he was not breathing! I COMPLETELY panicked!!! John looked and me and said calm down. Told me to perform CPR while he went to call an ambulance. I was not sure WHY Joseph has stopped breathing. I knew about the reflux thing but I had NO idea if that was the cause of what so I started doing a weird combination of CPR for not breathing AND alternating with what you do for a baby that is choking. I went back and forth for what seemed like forever. It was long enough that John was able to make the emergency call and was on hold waiting for an ambulance to arrive. JUST as we were starting to hear the sirens Joseph coughed and took in a deep breath and cried. OMG, I have NEVER been SO happy to hear a baby cry in my life!!!
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| Joseph on oxygen and apnea monitor |
The ambulance arrived. They look him to the local hospital but he was so small they transferred him to the regional hospital (where I had given birth to him). The hospital misdiagnosed him as a case of
missed SIDS. We were given a
pulse-ox monitor and an
apnea monitor. Knowing the severe condition Joseph was in when he was sent home I think the hospital should have given us an apnea monitor in the beginning...but I digress. Joseph continued to have problems. Some where so severe that we were in the car and on the way to the hospital because I could not get him to breathe. One of the events did land us in the hospital and the doctors wanted to run some tests. They did several things to him and come to the conclusion that Joseph was suffering from
silent reflux. Essentially he was spitting up like a normal baby would but the vomit does not make it up and out of his mouth. It stopped somewhere before then. Joseph had several symptoms like poor feeding, lack of weight gain, barking cough, and noisy breathing so the diagnosis made sense. We were told we could try and keep him upright after feedings but his case was so severe that we were told surgery was his only real option. The doctors wanted to do a
fundoplication. I am not sure how little he was when he had the surgery but I know he weighed less than 10 pounds at the time and he was so small they could not do the surgery laparoscopically.
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| Recent Picture of Scar |
Reluctantly we agreed to do the surgery. The surgeon said it would be a small incision but he lied. It was HUGE! Even today Joseph has a scar that crosses more than half his midsection! The fundoplication did stop the scary breathing issues but a new problem developed. Joseph was having a hard time breathing and his breathing was squeaky. This was at the same time we were told the laser surgery Joseph had to save his eyesight due to
ROP worked in his left eye but not his right. We went to see a retina specialist in Atlanta to determine if reattaching his retina was possible. We were told there was a 70% chance the surgery would even work and if it did then Joseph would only get color and general shapes out of the eye. With the weird labored breathing Joseph was doing we decided not to do the surgery plus it seemed like the risks out weighted the rewards at that time. We then went to see an
ENT. He told us there was a cyst in Joseph's throat that was blocking about 80% of his airway. We were glad we had skipped the eye surgery!
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| Kids sleeping in hotel in Atlanta |
Video of Joseph. You can hear his squeaky breathing when I stop the swing. So Joseph went into surgery to remove the cyst. It was suppose to be day surgery. It turned into three nights in the hospital. Joseph was not coming out of anesthesia right and then they could not get him off the ventilator. The ENT thought it was because Joseph suddenly had "too much" air now that the cyst was gone. He was used to working a lot harder to get air and now he did not need to breathe that way but he still was and was struggling. Joseph got better and was released home. I felt like the worst of the things that could happen to Joseph was over. I was still worried about him get a respiratory illness but other than that I did not feel like if one of us was not watching over him every hour of the day he was going to die. It was a relief!
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| Unhappy Teens: Don't let the smiles fool ya! LOL |
With all the things going on John went to seek a job and I stayed home with the children. Someone had to watch them and coordinate therapy. I was enjoying being at home and teaching the children. John went to work for an insurance company. He HATED the job. This is when I really noticed a toll being taken on our marriage. My older children were not happy. We were dirt poor and there was no helping it really. I could not work since someone had to watch the children. John was working but there was never enough money to go around because the
SSI the children received was reduced each time John made more money so we were never getting ahead. John could not find professional work and neither could I. When he was finally offered a job back in Las Vegas we accepted. When I told the older children we had to move they were not happy. They were in high school and tired of moving around plus we were poor and they were tired of having to deal with that too. At that moment I made one of the hardest decisions I had ever done in my life. I gave up custody of them to my first ex-husband. So at 14 and 16 they left my house to move in with him. In many ways I still regret that decision but I know at the time it is what they wanted. I don't know if you have ever tried to keep an unhappy teenager with you but it is like trying to snuggle up to a lion and expecting not to get hurt!
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| Box of "Supplies" I Found in My Back Yard |
We moved back to Las Vegas. I thought our marriage would improve but it was worse than ever. I was very unhappy and threatened to divorce John. I had even hired a lawyer. At the time I thought I had VERY good reasons to do so but I will not elaborate why in this public forum. In the end I did not leave because I did want to work things out with him for the sake of the children and I wanted to keep his health insurance. We lived in a horrible place (I-95 and Bonanza) when we first got back to Las Vegas. We lived there because it was cheap but John was working a lot and often gone until late at night. So at night I was scared. There were homeless people, drug dealers and drug addicts roaming the streets late at night. In the back of our yard I found a box of used needles and condoms. I was scared to even let the kids go out and play because I was worried they would get stuck by a dirty need or find a used condom. Stress was out of control. I also began an online graduate school program at this time. I wanted to make sure, when I was ready to enter the job market, that I had been working on something so I did not have a big unemployment gap in my resume.
I worked on graduate school. John worked on graduate school. I was in charge of the babies during the day and part of the night. John came home about an hour or two before their bedtime. He would play with them for a bit and put them to bed. I went to work on my school stuff and so did he. We shared a house but were no longer together.
It was at this time, when the children were two, that I noticed that Margaret's speech was not progressing and that all she was saying was echolalia. The first Early Intervention (EI) person I was sent in Nevada was nice but she only came out once and said she was leaving her job and the next time someone came out it would be somebody different. The next lady that came out I DISLIKED her a LOT! She was so snobby in her behavior. I might have been very poor at that moment and living in a dump but that did not mean I had to be treated like I was some low-life. The second time she came out she told me that I needed to make Margaret sit down and I had to read to all the children. I told her Margaret does not sit down. She is always on the move and constantly running around waving her arms and running in circles that I cannot get her to pay attention. The EI lady then said she used to teach Kindergarten and if parents had done their job then she would not have spent so much time chasing children in her classroom. Wow!!! I reminded her that the reason we were IN the EI program is that the children are at high-risk of having problems (this was before Margaret's autism diagnosis) and Margaret's behavior should not be that unusual for EI kids. She was still in a huff when she left. I called her boss and said to NEVER send her back out to my house. The next EI lady that came was ok but a ditz. I kept pointing out Margaret's inability to pay attention, her scripted speech from TV (echolalia), and running around all the time. I said I KNOW her behavior is unusual. My concerns were dismissed. It was not until I ran into anther mother with an autistic child and I was describing Margaret's behavior to her she said I should get her check for autism. By the time this finally happened it was close to their third birthday when they would age out of the EI system. I said I wanted her test and the EI lady agreed to do it. She said the reason it was not done sooner is because the pre-screening for autism worksheet was filled out by John (not the primary care giver) and he marked it where she did not fall under the need for screening.
I took her to the place where the screening was going to occur. Two people were in the room and did their evaluation. When they were done they said, "She did not score high enough for us to say she might be on the spectrum but we do recommend additional testing." When I asked why they said she spoke too well. I told them it was scripted from TV shows and they said she used it appropriately and they had never seen that before.
Video of Margaret obsessed with a toy broom because of the texture and sound. Notice she does not even look at the TV when it started up. This is before I had the autism diagnosis but looking back it makes sense!
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| Joseph wearing 12m swimsuit |
From when the kids where three to four I spent SO much time in private therapy offices and specialists. I had them tested for ALL sorts of things. James was later diagnosed as autistic. He speaks well and can do a lot of things great but he cannot make eye contract with adults he does not know. He will look at you ONLY if you are not looking directly back at him...lol. Margaret was later diagnosed with autism. She was a little hand flapper for the longest time. She also did not ask for anything or seem to have any independent speech. She just repeated what she had heard. It was obvious she could understand what you were saying to her IF you got her to pay attention to you but she could not express her needs and desires. She still has a problem with this and when she wants something for herself she talks about herself int the third person (Margaret is hungry, Margaret wants a bottle). Joseph was and still is a hot mess medically. Though I have not had any major scares with Joseph in the last two years to cause me to rush him to a hospital or urgent care center (knock on wood!) I am always worried.
That is why I got so mad at John for going behind my back to the pulmonologist and trying to get him cleared to go to church. I truly have no problem with him going to church but during the winter a church is a hot bed of disease. Since people are all hugging and handshaking disease go around like crazy! Then the kids at church are in daycares or schools and have all sorts of illnesses. It is NOT a safe place for Joseph to go right now! I found out recently that Joseph's weight had not changed in the last two years! Yep, TWO years! He will be five soon and weighs 26 pounds! He does not have enough reserves physically to fight a major illness off if he got one AND that does not even include his
other medical issues.
I was able to get
MRIs done on Margaret and Joseph. I thought the imaging center had mixed up the films. I got a report back that said Margaret had brain damage. She had
PVL and
diffuse white matter brain injury suggestive of
hypoxia associated with birth. The report said Joseph's brain was perfectly normal. I even called the lab and had them show me the results. it was obvious when I saw the film because Joseph has right-sided
plagiocephaly . That was another fight where I tried to get him a helmet to round out his head and the doctor and John argued against me. I got the helmet in the end and it was a good thing but I got it too late. It helped to round his head out some but not a lot but one upside is the weight of the helmet really helped to strengthen Joseph's neck muscles. Having the misshapen head though allowed me to easily identify which MRI film belonged to which child. The imaging center was right. The low functioning child had NO brain damage and the higher functioning child did. Wow! We also went for genetic testing. Margaret and Joseph both had a micro-array DNA test done and they were normal. Joseph even had a DNA test done specifically for
Fragile X but that was negative too.
So when I asked all the specialists, especially the neurology people, about Joseph I am told he is the way he is because he was born prematurely, had a low birth weight and then has experienced other medical issues. i say they are full of crap! I am still searching for what is wrong with Joseph. I have been trying to get an appointment with UCLA to get a fresh muscle biopsy done to test Joseph for
muscle myopathy and
mitochondrial diseases but so far I can't even get a frigging appointment. I tried calling again today to no avail! Joseph was a
floppy baby when he came home to me (still has pretty significant truncal hypotonia) and I knew something was not right. For a year I complained to John, therapists and a neurologist and they all told me he was going to be fine in time. I KNEW something was WRONG! I know that now but I feel as though I am not any closer to an answer for him. : ( I still have some other ideas on what might be ailing Joseph including
Cerebral Folate Deficiency and
Tyrosine hydroxylase (TH) deficiency. I am forever vigilant! If Joseph has something that can be treatable then I want to make sure I have not missed it. My little pincushion baby (I am coining a new term: a child who has been stuck with needles a lot or undergone a lot of medical testing) has worked SO hard to be here! He does it all with a smile on his face. He deserves the best life I can give him!
So that pretty much brings you up to date on the kids and their medical issues. This gives you an idea of what I have been through in the last five years. I have been a passionate advocate for their medical care and I have worked hard to teach them academic and other skills. I have enjoyed being a
SAHM for the last few years. They have needed me and I was there for them. I am afraid I will not be able to say the same when it comes to our near future.
