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.
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
|James and Margaret when they first got home|
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!!!
|Joseph on oxygen and apnea monitor|
|Recent Picture of Scar|
|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!
|Unhappy Teens: Don't let the smiles fool ya! LOL|
|Box of "Supplies" I Found in My Back Yard|
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!
|Joseph wearing 12m swimsuit|
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.