My youngest son, S., has had low muscle tone since he was an infant, maybe from birth. We recently were able to get a physical therapy evaluation for him and he is over 2 years behind. After waiting 3 months, we had an appointment with a neurologist to see if we could figure this out, once and for all. He does not seem to be on the autistic spectrum, like my older son J., but he has had his own share of challenges. We seemed to have reached a crisis point last week.
For about 7 to 10 days S. would complain that his tummy hurt every time he ate. He was eating only about half of what he normally does but still active and playing. At first I thought it was just because he didn't like what I served and was making an excuse. Then I thought, maybe he's not growing as fast, not as hungry, whatever. Didn't think too much of it. Last Thursday he starting complaining that his tummy hurt hours after he had eaten. That evening he was laying on the couch more, less active. I happened to make something that wasn't a particular favorite for dinner, cheese enchiladas. I purposely made them with mostly tomato powder instead of chili powder so they wouldn't be too spicy. He barely touched them. I suggested he go to bed a little early and rest so his tummy would feel better. I remember that he got some water to drink, so he was at least taking some fluids. I decided that I would call the pediatrician the next morning unless he was miraculously better.
In the morning he crawled into bed with me and went back to sleep. He seemed to be breathing faster than normal, but I wasn't too concerned yet. It was unusual for him to fall asleep with me in the morning so I kind of made a mental note of it. His brother came in after maybe an hour and kind of jumped all over him for being in the spot he likes, so he woke up. I yelled at J. "He was sleeping!" We all got up and S. went to play games on the computer, so again, I was thinking he's not too bad. Still I called and made an appointment for him because the belly pain had been going on long enough. I had told S. that I would take him to the doctor in the morning before I put him to bed on Thursday, so he asked if I would please take him to the doctor and then make him some breakfast. After a while he came back and asked where his oatmeal was so I made some for him. He ate just a few bites and came to lie down on the couch. I had already made the appointment for 11:30. Around 10:45 he started crying from the pain. He was complaining of both abdominal pain and also pain in both knees and one elbow. I called my mother and asked if I could drop off J. with her so I wouldn't have to bring him along too. I hurriedly got the boys ready and headed out. J. kept trying to talk to S. to make him feel better, but S. just wanted him to be quiet in the car, and was getting irritated.
I dropped of J. quickly and we headed to the pediatrician. S. pretty much cried through the entire appointment. The doctor examined him and I explained what was going on. I also discussed with her that S. had been having knee pain at night for quite some time, about every two weeks for the last year and a half he would wake up and complain of one or both knees, shins, or ankles hurting. We assumed it was growing pains but we were a little concerned. Every time I would be ready to call the pediatrician, the pain would seem to go away for a while so this was the first time I brought it up. I asked if she could do a Lyme titer on S., just to be safe, and she said she would write an order for it. She did a urine dip, a strep culture (his throat was slightly red), and a blood count in the office. I thought he was going to vomit after the fingerstick, but he never did. His urine had a large amount of ketones but no glucose. The strep culture was negative, and she said the white count was slightly elevated but not alarmingly so (12.8 k/uL). She instructed us to go to the Emergency Room at the nearest Children's Hospital, because she wanted to rule out anything serious, like appendicitis, and because of the amount of distress S. was in from the pain.
I called my mother to let her know what was going on, and started driving S. to the ER. Called my husband and a friend also. S. fell asleep quickly and stayed asleep for the rest of the ride there. I kept eying him nervously in the mirror, checking if he was ok. We were lucky enough to find a spot in the tiny ER parking lot, and to find an empty waiting room. We came on the right shift, daytime during the week is usually fairly slow. I explained what was going on to the triage nurse, and that the pediatrician had called. She faxed over a report to them also. They put us right into a room.
S. was seen quickly by both the emergency doctors and pediatric surgery. An IV was started and blood drawn. An abdominal x ray and ultrasound were ordered, and an IV fluid bolus given. We got the first lab values back quickly. His blood count was completely normal, with a couple high and low values in the differential that did not seem to be significant. (neutrophils 77%, lymphocytes 18%) His blood sugar was 65, so he was given a bolus to bring it up. BUN and creatinine were normal, BUN/creatinine ratio 26 (rr 10.0 -20.0). However, his bicarbonate level was only 11.6 (22.0-30.0 mmol/L) and he had a high anion gap of 21 (rr 7 - 16). I think it was at this point that doctors started questioning me about whether S. could have ingested aspirin or other medications. We don't keep aspirin in the house, and the other medication he asked about, isoniazid, I wasn't familiar with and we certainly didn't have it in the house. Sodium and chloride were normal. Liver function tests were all normal, bilirubin, ALT, AST, alkaline phosphatase, lipase, etc. S. was complaining that he didn't like the toy he got, in between crying about his pain. So ungrateful. LOL
We went for the abdominal x-ray and ultrasound. It was extremely difficult to get the ultrasound. The technician was able to rule out intussuseption but she had a very difficult time finding his appendix. He was in pain and crying so he wasn't being very cooperative. The technicians utterly spoiled S., bribing him with toys and stickers if he would just hold still. Three people tried to visualize his appendix, including a doctor but they weren't able to. They did, however, state that there was no secondary signs of appendicitis such as free fluid or local fluid collection.
More labwork was drawn from my son's IV, after we returned from diagnostic imaging. Lactic acid was 1.8, so that wasn't the reason for the high anion gap. Sedimentation rate was 2 (0-20mm). Creatinine kinase and c-reactive protein were hemolyzed, so no values back for those. Rheumatoid factor, an ANA screen, and Lyme titers were sent but we are still waiting for those. S. had a blood pH of 7.21, which was very frightening. Potassium came back at 7.5, but I'm pretty sure that was hemolyzed because other samples drawn at the same time came back hemolyzed. At this point a toxicology screen was sent, specifically for substances that can cause the high anion gap. The only substance detected was acetone, and I was questioned about whether S. could have swallowed paint thinner, but apparently ketones can also cause a tox screen to come back positive for acetone. I didn't figure that out until later on though. I questioned S. about whether he had "drank anything yucky" but he said that he "only drank water."
Another blood glucose came back low (58) so S. was given another bolus to bring it back up. BUN and creatinine still normal, with a BUN creatinine ratio of 30 (rr 10 - 10). Sodium, 129. Potassium, bicarbonate, and the anion gap came back hemolyzed. Calcium normal at 9.3.
S. was supposed to receive some morphine for his pain but surgery vetoed it until they came up to see him. Between their exam and the tests that were done, it was decided that the pain was unlikely to be due to a "surgical" problem. S. had been sleeping for a while after the ultrasound agony, but once he got a dose of morphine he actually sat up and played with the many toys the staff spoiled him with. We was wet so I got him some hospital garb and he was able to give a urine sample into a bottle. The UA came back with large ketones but no glucose. For some reason, they kept getting high blood pressures on my son. At first we thought maybe he was just moving too much and the machine wasn't getting an accurate reading, but they were consistently running in the 130's to 140's over 80's to 90's.
We went up to the pediatric floor for S. to be admitted around 7 pm. By then he was looking and feeling much better, though he still had some abdominal tenderness. S. was entertaining himself with the TV and the bed controls. He pestered the nurses for toys, thinking he was going to be showered with more things. Umm, no, you get one when you go home but for now we can get you toys from the playroom. My mother and J. came to visit. S. was still in some pain, but quietly watching TV. His daddy came up after Grandma and J. left. S. was NPO but I hadn't eaten since breakfast and dh was hungry too so he brought food. I was going to sneak out but dh didn't know S. was NPO so he let him see it before I could stop him. S. was pretty good about it though, he only made us feel a little guilty.
The nurse said more labwork was going to be sent but the doctors took forever to decide what they wanted drawn. At 11 pm I told her he was still awake if they wanted to get it before he went to sleep (please!) but they didn't draw it until 11:30 or so. He slept through most of it but woke up and cried when I tried to reposition his head on the pillow afterward. It figures. He went back to sleep quickly though. Glucose was 72, BUN, creatinine, BUN/creatinine ratio all normal. Sodium 134, bicarbonate 13.1, ammonia 38 (rr 11-35umol/L). Creatinine kinase 164 (rr 24- 195 U/L), c-reactive protein 0.2. S.' blood pressure returned to around 100/60.
The next morning S. was allowed some clear liquids and to eat if he tolerated them, which he did. I ordered him some french toast and he ate half a slice and complained that his tummy hurt. At lunch he had 1/2 a very small chicken tender and a little fruit, then complained of pain. He drank some juice but not much. He still had IV fluid running. Labs were drawn again after lunch. Glucose was 137 but he had fluid running with dextrose, so probably normal. BUN, creatinine, etc, sodium, chloride all normal. Potassium hemolyzed. Bicarbonate was 18.1, anion gap 15, so improving. His pediatrician came up and examined him. He wanted us to stay another night because what happened on Friday was pretty concerning and he wanted to monitor him a little longer.
S. was able to spend some time in the playroom after lunch, as he was getting pretty antsy. At dinnertime, S. couldn't bear the thought of eating the french toast that he insisted he wanted. I think he ate fruit but I can't remember. My mom and J. came up and the boys played in the playroom some more. I think I tried again to get S. to eat some dinner after that, but his "tummy hurt." When the staff game and offered snacks a little while later, Teddy Grahams and popcorn didn't hurt his stomach as much, for some reason. Interesting. I think this is the reason I didn't take the belly pain too seriously until it slowed him down.
We had a good night's sleep and on Sunday morning S. was eating better. Again with the "I can't possibly eat the french toast but the donut is fine." He ate a fair amount of fruit too. Still skittish about drinking. The IV fluids were turned off. The pediatrician came and found Sam up and playing in the playroom. Not much abdominal tenderness. I told him how S. was eating, and how he cleverly manipulated me about what he would eat. S. was discharged shortly afterward, we all had a nice meal at Grandma's and no complaints about the tummy. He ate fairly well at dinner too, although again, skittish about drinking.
We had some labwork pending at discharge, and hopefully it will be back by the end of this week. Lots of specialty stuff. Acylcarnitine profile, methylmalonic acid, urine organic acids, Lyme titers, immunoglobulin A, Rh factor, and ANA. Sam had an MRI of his brain on Monday that the neurologist scheduled 3 weeks ago. No one told the anesthesiologist so when I got there, there was a delay while she looked at his records and paged the neurologist (who didn't answer, because she is on vacation, of course.) She also didn't tell the staff about the bloodwork she wanted drawn while he was sedated, so they weren't too happy when I presented the lab slips. However, the nurses were really nice and scrambled to find the correct tubes while the MRI was being done. That procedure was easy on S., who acted like nothing happened, afterward, but rough on me. It's an awful feeling to watch your child pass out while someone holds a mask to his face, and then for them to show you the waiting room.
We had a follow up appointment with the pediatrician on Tuesday. Most of the labwork was still not back but the basic metabolic profile was, and it looked almost perfect. BUN and creatinine still normal, but BUN/creatinine ratio was now 27.5 (rr 10.0 to 20.0). I have no idea if that is significant. Creatinine kinase was now high at 350. I don't know why it was normal when he was in the hospital, unless the IV fluid for 8 hours before they got a non-hemolyzed sample had anything to do with it. The MRI report was back and the pediatrician went over it. A "mega cisterna magna" was noted, but did not appear to be a significant finding. The report said the brain MRI was unremarkable, except for prominent adenoids and fluid in both middle ear cavities. Postcontrast enhancement showed chronic granulation tissue, so I guess it has been more chronic than I realized. I know S. has not been hearing as well lately, but we did have a long stretch where he seemed to be much improved in that regard. Pediatrician said to wait for more labwork to be back before we start planning what to do about the adenoids and his ears. I'm not a fan of surgically removing symptoms or poking tubes into them, but he does need to hear and breathing through his nose would be nice too.
I'm a little frustrated because the pediatrician told me on the phone the day before that he felt the metabolic acidosis was caused by dehydration. That doesn't make any sense to me. S. had lost absolutely no weight from 3 weeks prior to his illness. Also, he was drooling profusely on the exam table when we arrived in the ER. He does that when he cries. If he was so dehydrated, why didn't he lose any weight, and why was he drooling so much? I don't understand by what mechanism dehydration alone can cause a child without an elevated blood sugar to produce so much ketones that his pH is 7.21. Doesn't make a bit of sense to me, there has to be another reason.
The neurologist is still on vacation and her resident apparently doesn't want to call me back until all the results are in so I'm not getting their take on the MRI, just the pediatrician's reading of it. It's sort of annoying because genetic labwork was drawn, and that will probably take a month. They are checking for Fragile X, getting a karyotype, microassay, and aldolase chromosomes, whatever that is. The pediatrician had given me a slip for a follow up basic metabolic profile, a celiac panel, and h. pylori antibodies. Just in case there was another cause for the abdominal pain. I just hope after all this, we can just figure out what is going on.
As of today, Wednesday, S. is eating and drinking normally with no complaints of belly pain. Playing and fighting with his brother. I think he is well, but I'm anxious about whether he will stay that way or not.
I know I threw a ton of detail into this, but hoping if anyone has ideas about what is going on, they will share them.
Update: Friday, 8/20: The tissue transglutaminase IgA level from the celiac panel was 48, so it is likely that S. has celiac disease. Normal is less than 20, borderline would be 20-30. That may have been the cause of the pain with eating, though it wouldn't be likely to cause metabolic acidosis. We will have him seen by a gastroenterologist.
Soon we were settling into the routine of parenting an infant and a very active toddler. We were seeing some subtle signs of an autism spectrum disorder in J., but at the time we didn't recognize them. We just saw him as a very active, high needs toddler. S. appeared to be growing and developing as expected, at first. However, we did notice that most of his stools were green and loose. Still, S. was gaining well, he was 11 pounds at his two month checkup, which was 4 pounds over his birth weight. I just thought that the green stools were caused by oversupply. I always tended to produce more milk than my babies could keep up with.
When S. was about 3 months old, the whole family was sick with some type of cold or virus for weeks. S. was sick briefly with some nasal congestion and a low grade fever. I noticed when he was sick that he seemed rather limp when I picked him up, but he was alert when he was awake and the floppiness lasted less than a day. I ended up with a severe sore throat progressively got worse until I had a lot of difficulty swallowing. I went on antibiotics at the point where I was in a near state of panic every time I needed to swallow, and then my symptoms improved rapidly. S. actually did better when I wasn't eating much, and we briefly saw his stools become more typical for a breastfed baby. But it was short lived and he went back to green stools as soon as I was eating normally again.
I think I really started to wonder when S. was getting close to 4 months and he wasn't holding his head up. If he was on someone's shoulder he would lift it partially, but his head would be tipped to one side or the other. I thought he was getting enough tummy time because I had been putting him to sleep on his tummy since he was about 3 weeks old. He had been fussy on and off since his phototherapy at 10 days of age. A friend of mine with 5 children had told me she always put her babies to sleep on their tummies and they slept much better, so we gave it a try and it did seem to help him sleep. But it didn't develop his neck muscles like I would have expected. Here was S. getting close to 4 months, and he wasn't anywhere near ready to go in the exersaucer.
S. had a cold when I brought him in for his 4 month checkup, and was very irritable. The pediatrician was sure he had an ear infection, but decided after looking in his ears that he did not. I just thought S. was hungry. Our doctor said he was not going to give any shots that day because of the irritability. To make matters worse, the doctor forcibly detached some adhesions that had formed from S.' circumcision. (Ouch!) Without discussing this with me first, I might add. Then Dr. W. was finished with his exam and said he would be back shortly to talk with me. I nursed S. and he calmed down.
When the pediatrician came back, he told me that S. had "done nothing for fine or gross motor development since birth." He needed full support for his head and neck when placed in a sitting position, and he was not bearing weight on his legs when held up to stand. Needless to say, this was a shock. He told me to put S. on his tummy more often and that he would recheck him in 2 months. I was a little concerned that S. had not yet doubled his birth weight, but he had been gaining steadily since his 2 month checkup and was now 13 pounds 8.5 ounces. I called the Birth to 3 hotline when I got home, and set up an appointment for an developmental evaluation. I remember giving S. some infant tylenol for the irritability shortly after the appointment. That night, we saw the first bloody stool. I called the doctor but he didn't seem concerned, thinking it was caused by a rectal fissure.
Looking back over my notes, it seems like we either brought S. back to the pediatrician because of concerns or he must have had a recheck because I have him down as finishing a 10 day course of antibiotics for an ear infection just before 5 months of age. At 5 months he was 14 pounds, 5 ounces, but I was a little concerned because he had dropped to around the 10th percentile for weight. He received the shots that the pediatrician had delayed at 4 months due to irritability.
The evaluators from Birth to 3 came out to the house when S. was almost 5 1/2 months old. They are required to have two disciplines evaluate a child's development. I think that we had an OT and an SLP for the evaluation. S. scored at the level of a 2 month old for gross motor development, and 3 months old for "cognitive skills." He wasn't yet reaching for my face when nursing, or for objects. His speech development was considered age appropriate. We would have an occupational therapist come out to the house once a week, though it took a month for them to start the visits. I was really glad that I had called as soon as the doctor had noticed the problem and had not waited for a recheck. I was really worried about why S. was so far behind. I wondered if he had cerebral palsy or so other serious problem. I remember seeing a very disabled older child with his mother in the store, a big boy sitting up in the grocery cart, and wondering if that was going to be my child's future. I really had no idea what to expect.
The 6 month checkup found S. at 15 pounds 1 ounce, still at the 10th percentile. He had just started with birth to 3. My concerns which the pediatrician blew off: occasional bloody stools, irritability, arching his back, and flattening on the sides of his head. Shots were given despite S. having thick fluid in one ear and a cold. I didn't realize it at the time, but the shots should not have been given this day. Not only because of the cold, but because he just had a round of shots at 5 months and they should have been given 2 months apart. This would be the last time I would allow vaccines to be given to S.
I brought S. in to the doctor about a week later because of irritability, to have his ears checked. S. did not have any signs of an ear infection. We saw a different pediatrician and I asked her for her opinion on S.' developmental delays and bloody stools. He also seemed to have persistent nasal congestion. She suggested eliminating dairy from my diet. I failed to see any difference after 1 month, despite careful elimination of all forms of dairy. I was careful not to replace dairy with soy, whenever possible, knowing that there is often cross reactivity.
We cautiously tried introducing some foods to S. but didn't have much success. With J. I had made homemade cereal by grinding rice to a fine powder before cooking it. With S. it seemed like the rice gave him excema. We tried oatmeal and it gave him diarrhea. We had one diaper with obvious blood tested, and indeed, it was blood. A quick exam and this was shrugged off as a rectal fissure, even though the baby was having loose stools that were unlikely to produce a fissure. The pediatrician was skeptical of homemade cereals and suggested packaged baby barley cereal. I tried it, against my better judgment. Within a few days, we saw larger amounts of blood in his diapers. We decided to stop trying solid foods for a while and made an appointment with a gastroenterologist that was known to be breastfeeding friendly.
When S. was 7 months he had his appointment with the gastroenterologist. There was a longer wait for the doctor that was "breastfeeding friendly." While we were at the appointment, S. took frequent snacks at the breast, and in between feedings he would arch his entire body backwards, almost as if he were trying to look at something behind him without turning his head. I would face him in the other direction, and then he would arch again. The doctor prescribed pancreatic enzymes for me and pepcid for S. He told me that the enzymes should "make the breastmilk like hydrolyzed formula." At the time I didn't know it, but there are other enzymes available over the counter that are actually more effective than pancreatic enzymes. The OTC plant based enzymes are less likely to be destroyed by the stomach acid and they are available in specific formulations to aid digestion of a wide variety of foods.
At the time I went with what the doctor said, not having a better source of information. But S. did not improve. He quickly shifted from having an occasional bloody stool, to having them every day and in almost every diaper. Now granted, it wasn't a large amount of blood, but it certainly was a red flag that something wasn't right. S.' diapers had an unusual odor, which almost reminded me of formaldehyde. I discussed the problem with the doctor and even he wavered. "Well, you have given him almost 9 months of breastfeeding.." I expressed how important it was to me to continue breastfeeding and asked if there was anything else I could try to determine what foods S. was reacting to.
So the doctor suggested an elimination diet, and had his dietitian give me some instructions. For 21 days I consumed only chicken, turkey, rice, rice milk, rice dream "ice cream", apples, potatoes, canola oil, sugar, and salt. I had already been losing weight from the dairy elimination, but I continued to drop the weight, down to about 20 pounds below my pre-pregnancy weight. I lost all the weight I had gained since high school, plus an additional 5 pounds. Now this might sound like a good thing, but I was still hungry all the time and certainly did not feel healthy. In addition, I now believe that rapid weight loss in the breastfeeding mother can cause her to shed more toxins in her breastmilk as she loses body fat, in addition to worsening any existing nutritional deficiencies in both mother and baby.
I called the doctor again to discuss the lack of improvement in S. He still continued to have bloody stools frequently. However, my breastfeeding friendly doctor was suddenly unavailable. On a leave of absence, I was told. We made an appointment to see his partner, and S. was examined by sigmoid colonoscopy at 9 1/2 months of age. On the screen, I could see tiny little ulcerations all over the inside of his colon. Not exactly the rectal fissure that our pediatrician insisted was the cause. Some small tissue biopsies revealed large numbers of eosinophils, lymphoid nodular hyperplasia, and other abnormalities. The gastroenterologist said there was no way to continue to breastfeed safely. He told me to feed Neocate only for several weeks and then begin to introduce solid foods as well.
The dietitian gave us a Neocate sample, and I dropped off our prescription at a local pharmacy to get more cans of the formula powder. I did, however, immediately call our IBCLC, who also happened to be a board certified pediatrician, for a second opinion. She suggested that we try the formula for a week and in the meantime, she planned to contact a GI specialist outside our area for another opinion. The specialist was difficult to reach, and we just plain had a hard time getting any information about safely transitioning S. back to breast. It was heartbreaking hearing him cry when he wanted to nurse, especially when he first tasted that horrible formula. I cried a lot too. I missed nursing my baby. But I continued to pump and I froze the milk. I wasn't ready to give up.
My son initially gained about a pound on the Neocate, and we did not see visible blood in his bowel movements, but they still continued to be loose and mucousy. S. was still reacting to any solid foods that we tried to introduce. He started to catch more colds and viruses, seeming to be ill with a fever approximately once a week. After a while I began to notice a pattern. Every time I gave him infant Tylenol, he had a lot more loose stools and even traces of blood. When I stopped giving him the Pepcid suspension, I saw a noticeable improvement in the consistency of his stools. He had been reacting to something in these liquid medications.
I called a local university that had a low cost clinic for naturopathic students. I talked to the receptionist to discuss the problems my son was having and ask if any of the naturopaths at the school might be able to help. Fortunately one of them was a DAN! doctor and she was very willing to see S. We coordinated with one of our doctors to order her requested labwork so it would be covered by insurance. I also paid out of pocket to have stool samples tested. We found out that S. had NO bifidobacterium in his stool, so that was our first intervention. We got a 4 strain bifidobacterium probiotic that was free of all common allergens. It probably shouldn't have been surprising that S. did not have the beneficial flora he should have, given that I was treated in labor with antibiotics and again when he was just a few months old, plus S. was also treated for an ear infection once.
We also added some other supplements. S. was, not surprisingly, not able to tolerate DHA (a lot of babies can't) but he did very well with larch arabinogalactan, slippery elm, and a little rice protein powder. The slippery elm was actually the first food that he tolerated, at just over 1 year of age. It had the texture of snot, but he loved having something to eat off a spoon. It was also a convenient way to give the other supplements, as they mixed well with the "slime".
With the supplements and also avoiding any liquid medications whenever possible, S. began to have more normal looking stools. Around 1 year of age, I started challenging him with small amounts of breastmilk mixed with his Neocate. He tolerated the breastmilk with no problems whatsoever, so I was able to transition him to 100% expressed breastmilk in just a few days. He was very enthusiastic. I could tell because he was drinking significantly more breastmilk than he did Neocate. I'm sure he was just thrilled to be drinking something that tasted good. But, he would not latch on and nurse directly and my supply had suddenly dropped by about 50%, most likely due to the stress of trying to keep up with S.' daily intake. Since my goal was to transition him back to breast, I wanted to be producing close to what he was taking in each day.
While I was happy that S. was back on 100% breastmilk, I was saddened by the fact that he would not be able to have cake on his first birthday. It was just too many potentially allergenic ingredients to take the chance. At the time, he actually had not yet tolerated any foods, though he would soon have his slippery elm. I had a little party for S. with family, and it was very awkward for us to celebrate with cake without the birthday boy stuffing some in his face.
I was able to get S. back to breast at 13 months of age, after several months of failed attempts at getting him to latch on. We worked with a wonderful holistic IBCLC who gave us many useful tips and strategies in addition to helping me to rebuild my supply. I paced his bottle feeds by using slow flowing newborn nipples, sitting him upright, and holding the bottle at an angle. I fed him while skin to skin near my breast. We did lots of skin to skin time between feedings, and I carried him in a sling. One day at the IBCLC's mother's group, I attempted to latch S. while wearing a SNS. Some milk dripped from the tubing and, to my surprise, he just latched on. And once he did it once, he easily switched back to full nursing. So S. was nursing again and we were soon cautiously adding new foods.
My holistic IBCLC also strongly encouraged me to look at my diet and consider making some changes. I added a few supplements, including cod liver oil, both for myself and my sons. The whole family, in fact, my husband started taking it too. I read a few books that I found quite enlightening. Breaking the Vicious Cycle: Intestinal Health Through Diet by Elaine Gottschall, The Maker's Diet, by Jordan Rubin, and Nourishing Traditions , by Sally Fallon, president of the Weston A. Price Foundation. Although the recipes in Nourishing Traditions are decidedly underwhelming, the lengthy forward to the book does a great job describing what a healthy diet looks like, and it's not what the vast majority of health experts recommend. Worth reading, or at least checking out the WAPF website. GUT AND PSYCHOLOGY SYNDROME, by Dr. Natasha Campbell-McBride is also a worthwhile read, considered more up to date than Elaine Gottschall's book.
Developmentally, S. was making progress. At 9 months, he could babble "mama" which meant "feed me"and he got into a sitting position by himself in the crib. He began crawling at a 9 1/2 months. At 10 1/2 months he pulled himself up to a stand in the crib. At 11 months he was saying "mama" just for me, "baba" and giving a toy. Over the next 6 months or so he added a few new words here and there. He walked by 17 months.
But S. wasn't out of the woods just yet. Several months after his first birthday he was still barely 18 pounds. To make matters worse, I was ill with a violent stomach bug and my milk supply dropped dramatically. My son was well below the 5th percentile on the growth chart, even the one for breastfed babies. We went to the gastroenterologist for a follow up visit. By then, the breastfeeding friendly one was back. He was quite supportive and suggested adding more foods, which I was was agreeable to but nervous about possible reactions. S. was getting mostly fruits and vegetables, but he needed foods with a higher calorie content. We were feeding avocado but we decided to try organic yogurt, which he fortunately tolerated.
We worked with another naturopath that suggested buckwheat and sprouted quinoa, so we were able to make some gluten-free porridge for S., and he tolerated those very well. Soon S. was also eating grassfed beef and free range chicken. Oh, how he loved meat! I made him a little meatloaf regularly, using gluten free ingredients. I loved to watch him eat bits of avocado and meatloaf with his bare hands, and knew that this was a great thing for him. Eventually we got to the point that we were all eating the same meal as a family, but for quite a while I make S. his own meals. I would make more than one serving at a time. I think he was about 2 1/2 before we introduced gluten and around that time was probably when I started making just one meal for the whole family.
We also took S. to a craniofacial surgeon when he was 10 months old because of the flattening on the sides of his head. Although we were able to rule out craniosynostosis by CT scan, we were still concerned that the flattening of the skull might be affecting him. We learned about an alternative treatment called craniosacral therapy. This is a massage-like technique. It has some parallels to chiropractic, but it is very gentle. We worked with a chiropractor that knew the technique, and later a naturopath, but eventually we found an OT whose skills were superb and we saw visible changes in the shape of S.' head and face. Her talent is exceptional and she continues to work with S. periodically to this day. We also found CST to be very helpful for S.' trouble with fluid in his ears. S. also has pectus excavatum, which has improved as well. I believe both of these conditions can be prevented in many cases, by optimizing maternal vitamin D status during pregnancy and lactation.
Around the same time that S. was diagnosed with the allergic colitis, we started to realize that our older son was showing signs of sensory issues. The OT that saw S. regularly through the Birth to Three program suggested I read The Out-of-Sync Child and many of the concerns that I had about J. started to make sense. We would later learn that J. did not just have sensory processing problems, he actually had Asperger Syndrome. (More about J's story here.)
But this was when my husband and I started to really take a step back and wonder how things went wrong. We took a long hard look at our diet, our choice to vaccinate the boys using the AAP recommended schedule, even the products we used to clean our home and wash our clothes in. I had a lot of regret, because many of the choices had been mine to make. Something had to change, we couldn't trust the doctors to have all the answers and we had to seek out some of our own.
I can't say that we have "arrived," but we have made a lot of changes and we are living and eating healthier than we ever have. We are working to help our children make healthier choices. I have never been a big fan of cooking, but I am learning. We have cut out most of the processed foods that we used in the past, and I cook as many whole foods as possible. I'm much more aware of where our food comes from, and more selective. We grow some of our own, including raising chickens for eggs. There is a learning curve, but healthy children and healthy parents are worth all the effort it takes.
Fast forward about 2 years and I was planning the birth of my second child. The memories of J.'s difficult birth were still fresh in my mind, but I was hoping things would be better this time. At 34 weeks gestation I was sent for a routine ultrasound scan. The technician took a number of measurements. I discovered that S.'s head measured 97th percentile, and was instantly filled with dread. Strangely, I was measuring a bit small at that time and the technician also noted large fluid pockets on the scan. My obstetrician seemed a little concerned about the fluid pockets and informed me that he would like to have me come in for a weekly NST or Nonstress Test. He told me that sometimes the large fluid pockets can indicate some type of problem, but usually nothing is found. So now I was really freaking out. I remember coming in for the NSTs. The first time, the baby seemed to be running away from the transducer. When that happened, I wasn't concerned because I could feel the baby moving vigorously as the nurse tried to locate the heart tones. Another time the baby's heartbeat looked very flat with little variability. The OB came in and studied the strip and then decided the baby must be asleep. He applied a loud buzzer to my belly to wake him up. S. woke with a vengeance, so we got the desired variability and I went home. The next time I came in, the room with the nice recliner for the NST was not available so I ended up stuck on a stretcher. I couldn't see the screen or the monitor strip very well, and I couldn't get the stretcher to the right angle for comfort. I was extremely uncomfortable and it felt like I was abandoned, chained to this monitor. By the time they came back to check on me I was in tears. Not that I got any sympathy from the staff, because apparently they were busy. The strip looked fine.
At my 37 week checkup I was 2 cm dilated, which surprised me. I was experiencing some back pain and general discomfort around that time, but nothing that really felt like contractions. I was still working a couple of 8 hour shifts per week in the hospital. The census was running low and as a float pool nurse I was being pressured to use my PTO which I was saving for after I had the baby. They were obligated to guarantee my hours, so I was assigned to "sit" with a patient on a 1:1, something normally done by the paraprofessional staff. So there I was, 9 months pregnant and crawling around on floor mats after a 3 year old with a tracheostomy. I complained about it to the nurse manager, who asked "What do you do at home with your son?" Well, I lie down on the couch and close the baby gates to keep him in the living room, you %$@#. That's what I do at home. No sympathy for the very pregnant nurse. After another shift with the same child, during which the ENT decannulated the child ON THE FLOOR without warning me, I decided to cancel my one remaining shift that I had booked before my scheduled leave.
The following Tuesday I was scheduled for my induction. We arrived at the hospital at 7am and went through admissions. When we got up to the floor, the midwife was assigned to do the some of the preliminary paperwork and such. She kind of slammed on the brakes and suddenly decided that she needed to do an ultrasound before the induction, to see if the baby was head down. Seemed a little late to be wondering about that, and I was kind of curious as to why should couldn't tell by where the fetal heart tones were located and by just feeling my belly. I knew that the baby was head down and very, very low at my 34 week ultrasound. The technician had a hard time taking some of the measurements because of how low he was. I think she may have even used a vaginal probe to check some of them. I really didn't think it would be possible for the baby to flip given how engaged he already was. The midwife also wanted to examine me to see if my anatomy was suitable for breastfeeding. I thought that was very strange. After she examined me and proclaimed my body met her criteria, since I did not have flat nipples, I informed her that my first child had taken care of that problem in the 23 months that he was breastfeeding.
The OB arrived at 8 am. I had expected that we would use cervidil again but when I arrived for the induction, the doctor said I was already 3 to 4 cm dilated and there was no need for cervidil. I was a little anxious about the Pitocin, but it was either that or go home. Because of my concern about having a difficult birth if the baby's head got too large, I opted to stay. I really thought I was doing the right thing by delivering before the baby's head got any larger. After all, the ultrasound measurement of his head was at the 97th percentile. I thought if I went to term the baby wasn't going to fit.
The next thing I knew he was holding an amniohook and saying "I'm going to break your water." Now, he did pause for a moment after he said it. I had a few seconds in which I could have screamed "No!" but not really any time to consider it. He broke my water. My husband called work to tell them he wouldn't be in that day. We weren't sure exactly what was going to happen up until the OB broke my water. With J. we came in twice and went home twice before I actually went into labor. But we knew that we were locked in once my water was broken. Although I just asked my husband what he remembered about this and he said his reaction was "What did he just do?"
After several painful attempts by the nursing staff, an IV was placed. I don't know why they can't listen when I tell them which veins tend to not work very well for me. I know which ones collapse and which ones have multiple valves that impede IV insertion. After all, I am a nurse. Shortly afterward I received my first dose of antibiotics in my IV and the pitocin was started. At first the contractions didn't feel much stronger than Braxton Hicks. I watched TV, even called a friend and chatted on the phone. The OB came back into the room around 9:30am and stated that if I could talk on the phone, the contractions weren't strong enough. That's when I decided that having an induction is a lot like being tortured by your brother. "Oh, that doesn't hurt?"
I had asked if I could walk around during labor, because the hospital was supposed to have wireless electronic fetal monitors. But apparently the one in my room was not wireless, and there was only 2 rooms that had the wireless EFM. Oh, and the nurses said they didn't work very well. Translation: "They take too much of our time to keep adjusting them when you move around." Only certain rooms had the wireless EFM, and they were full. Can we say "bait and switch" anyone? So I was stuck in the bed again and I had to have continuous EFM because of the Pitocin.
The nurse that was assigned to me had another patient in labor, and she was having a lot of difficulty attending to both of us. So I ended up with the charge nurse providing most of the nursing care during my labor with S. She was pretty nice though. Around 10:30 am the contractions were more intense and definitely painful. The nurse checked and found that I was 5 cm dilated. I wanted to try something for pain, but not the epidural just yet. Again, the only thing available was Stadol. She gave me a dose around 11 am and it did nothing. I reluctantly asked for an epidural, thinking I had failed again by not being able to cope with the pain. So she called for the anesthesiologist. And we waited. And waited. And I writhed around in the bed in pain. My husband was like "are you all right, you look like your eyes are going to roll back in your head?" I just gasped out "It hurts!" As noon approached I told the nurse that I was having a lot of pain that was not completely going away between contractions. She was in the room running my second dose of antibiotics.
It ended up being a blessing that the anesthesiologist never showed up. My obstetrician came back shortly after I was starting to have pain that didn't stop when the contractions did. He decided to check my progress and his jaw just about hit the floor. He said "You are complete. You have remarkable control for someone who is fully dilated." I guess he expected screaming and swearing. I know I heard some screaming from the last patient that he delivered in the next room. I'm more quiet in transition, just trying to keep it together. But when he said that, it was a ray of hope. I was almost done! I didn't need the epidural now, because I could see the finish line! Suddenly the pain became almost bearable. It wasn't going to take another 8 hours, and I would be able to push well because I wasn't numb.
And before I knew it I was pushing, and the baby was moving down this time. I felt the "ring of fire" and thought it would be easier to push without that sensation. So I asked for a local anesthetic. The doctor injected some lidocaine and the burning went away, except for one spot, near my episiotomy scar. But apparently, there was a tear beginning in a new spot, because when I pointed to where the lidocaine wasn't working, the OB started to say "I can't do anything about that" but then saw that I wasn't talking about the tear he was seeing. Too bad he didn't clue me in at the time, perhaps to suggest repositioning? I was sitting upright on the bed, thinking it was much better than the semi-reclined position I delivered J. in, but unfortunately it also meant that I was sitting on my tailbone. Which I think was the cause of the tear, as it pushed baby's head forward.
The main thing I remember about pushing was people counting to ten. And me feeling like my lungs were going to explode if I didn't take a breath. I started screaming through clenched teeth vocalizing more during pushing to try and get some air that way but when I did that it seemed to make everyone nervous for some reason. They kept trying to get me to quiet down. I tried to ignore them but it wasn't easy to do. And I don't construct sentences very well during that part of labor, I'm lucky just to get a few words out. After about 45 minutes I just decided I had enough of it and pushed with all my might. S. was born at 12:45pm, after approximately 2 hours of active labor. I felt elated, I had given birth without an epidural. Now I knew that I could do it!
I wanted to lift S. up onto my chest as he was born, as I had with J., and my OB reluctantly agreed. But as I grasped my son under his arms and started to lift, the doctor started yelling "Short cord!" He yelled it about 3 times before he got my attention. I was all set to lift S. up close to my face, it took a moment for his words to click. I put the baby on my tummy but I really wanted to look at him more closely, so I said to the OB "Cut it, then" and sort of shrugged. S. looked fine to me, he was breathing and looking around. I had never heard about the benefits of delayed cord clamping so to me, baby was out and breathing, why does he need it? My doctor paused for a moment, as if he were thinking about it, but he never said a word. He clamped and cut and I lifted my son up onto my chest.
I know I held him for a short time but I don't remember anything about looking at S. or talking to him. All I remember is the pain. The tear that the doctor probably knew was happening as I started pushing, now I could feel it. At least I could feel it as the doctor persistently poked and prodded at it as he was trying to decide whether or not to stitch it up. It wasn't a terrible laceration, more like a skin flap but it was a labial tear in a really uncomfortable location. My husband didn't take any pictures of me holding the baby right after birth because he felt like he couldn't avoid exposing things we didn't want in the photo. So I don't even have pictures to remember the moment. I quickly asked for my husband to hold the baby instead because I felt my arms tensing up and I didn't want to squeeze him. My husband would not hold him, I think because he had a longer section of umbilical cord with hemostats attached to it. He was afraid of hurting him, I guess.
So poor little S. was hastily brought to the waiting warmer and basically left alone. Of course my husband was watching over him and taking pictures but the nurse dashed back to my side because at that point she was the only one available to assist the doctor and there was again concern over bleeding. This time both pitocin and methergine were given. I was, again, not particularly aware of the delivery of the placenta, but I strongly suspect some cord traction was used. My husband recalls the time from birth to delivery of the placenta as being approximately 10 minutes.
Soon the bleeding was under control and the nurse began doing the routine newborn procedures as the doctor finished poking and prodding examining me.
7 pounds even and not too happy about it.
I got him back but he was mad! I had wanted to see if he could do the breast crawl and latch on without help, but there was just no way. He wouldn't calm down. Finally about 2 hours after S.'s birth, I got up, sat in the rocking chair with a pillow on my lap and put him to breast myself. He did nurse well for about 5 minutes on one side, then fell into a deep sleep for about 6 hours.
A significant portion of those early hours he spent on the warmer as we were moved to another room and tried to get comfortable. He didn't need the warmer, but the nursing staff was apparently too busy to switch it out for a bassinet. We were in a really tiny room, normally used for patients having gynecological procedures. Again with the bait and switch, as we were offered a "nice clean room." Yeah, one that is half the size. After family and friends came and admired the new baby, I decided I would like to hold him and maybe see if he would nurse again. He slept and slept.
The baby had some difficulty latching on, but nothing like my first baby. S. did NOT have a tongue tie, and the difference was pretty amazing. As for the rest of the short hospital stay, I'll just say it was annoying. They never brought me a dinner tray or a menu, and by the time I actually wanted to eat something it was too late to get one. They wanted to weigh my baby and test his hearing at 1 am. I was ok with a quick trip to the nursery but I ended up walking the halls trying to find a way to get him back. I could see into the nursery but no one was paying attention to me and I couldn't see where my baby was. Finally I had him back but I was up all night. I couldn't get the room dark and I could hear other babies crying nearby. We went home when S. was about 28 hours old. Even having a toddler in the home was better than dealing with the constant influx of every hospital staff member imaginable. Although the initial welcome was a little too exuberant!
Welcome home, S.
S. ended up having a rather sleepy start to life. He nursed enough and had the correct amount of wet and dirty diapers, but he was a very sleepy baby. I took him to the pediatrician at 3 days of age because of the sleepiness and some jaundice was noted but no blood test was done. We went to see a lactation consultant when he was 8 days old. He was just 2 ounces shy of regaining his birth weight. I was diagnosed with breast engorgement, hyperlactation, and plugged ducts. The baby was noted to be jaundiced. We saw the pediatrician the next morning and the baby's bilirubin was 17. We got a bili blanket delivered that afternoon, which brought his level down to 14.6 by day 10. This seemed to make him more wakeful. And a little cranky. Recheck on day 11 was 14.3.
S. would go on to develop other issues, including allergic colitis, low muscle tone, developmental delays, and eventually failure to thrive. He is now a healthy 5 1/2 year old with some mild hypotonia and slight delays in fine and gross motor development. Many of the challenges he experienced could possibly be attributed to his induction prior to term, cord clamping, intrapartum antibiotic use, lack of skin to skin care, and jaundice. My advice to other moms is to educate yourself and carefully consider the use of any interventions in the birth process to get the best health outcome possible for your child. I am thankful to Birth to 3, a very wise holistic IBCLC, and a DAN! naturopathic doctor for the progress S. has made to date. S. is a very sweet and affectionate child that has enriched our lives in many ways. I enjoy hearing him share his thoughts with me each and every day.
I feel like I am kind of going backwards here, but since I didn't discuss J.'s birth in detail in the story of his first year of life, I'm going to talk about his birth before I move on to other topics and experiences. I believe that how we birth has a strong influence on infant development, and it is something we need to be mindful of so we can make informed choices in our care.
I would say that I went into my first pregnancy with my expectations for birth colored by past experiences. I had supported a friend during labor and was present at the birth of her daughter. I witnessed several births when I was in nursing school. I heard the stories of other women's births. I had a realistic idea of what a hospital birth entailed, and I didn't see anything wrong with that. I wanted to have an unmedicated birth, but didn't really feel too strongly about it. I was just willing to wait and see how things went. I knew I didn't want a c section, but didn't know much about how commonly used interventions increased the risk of having a surgical birth.
I thought I knew pretty much what I needed to know. I had studied maternal/newborn nursing, I was aware of what the hospital routines were like. I signed up for a childbirth class, mainly so my husband would have some idea of what to expect. The hospital where I was to deliver was about 30 minutes away so I ended up taking the class at a closer hospital, just for convenience sake. It didn't really occur to me that there are different types of childbirth classes, so I didn't do much shopping around.
I did ask my OB a list of questions about his practice style, including c section rates and episiotomy rates, whether he used forceps or vacuum, and how frequently, that sort of thing. I had spent some time working in a newborn special care nursery, and had heard some horror stories about the use of vacuum and forceps, so I really wanted to avoid them. My OB said he did not use vacuum, but just the forceps and he wouldn't do anything that he wouldn't do for his own child. I was satisfied with that answer. I wrote a birth plan and went over it with my OB in the third trimester, he was agreeable to it and included the birth plan in my chart.
As I was nearing the end of my pregnancy, an ultrasound was scheduled. I don't recall the exact indication for the ultrasound, but it sounded pretty routine. The scan was done at 37 weeks and 4 days gestation. The baby's weight was estimated at 8 pounds, 2 ounces. I don't recall anyone mentioning that ultrasound estimates of weight could be off by up to a pound, so I was quite content to let the OB schedule an induction. I was getting very uncomfortable. It felt like that baby's foot was a knife sticking directly into my liver. From what I had heard, 37 weeks was considered full term. I thought, why not get him out while he still fit, right? I was actually rather annoyed that they wouldn't schedule it until he was close to 39 weeks. Not that they didn't do that, but his due date was toward the end of the week and inductions were normally scheduled at the beginning of the week. However, inducing for a suspected large baby does not decrease the risk of c section, nor does it decrease the risk of complications like shoulder dystocia. I never received any information on the risks and benefits of inducing from my obstetrician. I did get a heads up from my pediatrician, but unfortunately I didn't heed his warning.
Now, I had heard enough horror stories about pitocin inductions that I really wanted to avoid one if possible. So after discussing this with my OB, he suggested using cervidil to ripen my cervix. I didn't happen to have heard any cervidil horror stories. I was scheduled to come to the hospital on Tuesday April 9th, at 38 weeks 5 days. News flash! There are cervidil horror stories. This is one of them.
When I arrived at the hospital and got through the admitting process, the nurse put on the belts to measure contractions and the baby's heartbeat. To my surprise, she said that I was contracting at regular intervals. The only thing is, I didn't feel the contractions at all, so I didn't think they were particularly significant. I can't recall the details very well, but I believe I was about 1 cm dilated. The nurse inserted the cervidil, which looked like a little piece of gauze with a string attached. This allowed it to be removed if it caused contractions that were too strong. It didn't really do anything. I spent the day at the hospital and used some natural methods that the nurse suggested to try and get labor going. I walked up and down the halls and bounced on a birthing ball until I was sore and aching all over, but I did not go into labor. At the end of the day, they sent me home, but with the plan for me to return the next morning.
I didn't sleep that night, excited and wondering when I would go into labor and have my son. When I came back the next morning, still not in labor, they repeated the cervidil and after monitoring for a short time, sent me home with instructions . I was supposed to remove it if contractions became too strong. Late that afternoon I started having contractions that were uncomfortable, though not painful at first. They were regular. I decided to keep busy, running a few loads of laundry and making some dinner for my husband and myself. By the time I had the food ready, the contractions were strong enough that I wasn't enthused about the idea of eating. I started to time them around 7pm and they were 2 minutes apart for 1 hour. I called the doctor and received a call back from the OB on call. I asked if I should take out the cervidil because the contractions were so close, but she said no. But she did say to come in.
I arrived at the hospital around 9pm. I was still about 1 cm dilated. The admission was pretty straight forward, but the contractions were really intense so I was a little snappy. I believe there was some bad language involved. My husband commented on that later, but you know, he wasn't the one in labor. There were several painful attempts to get an IV in. I tried walking the halls but the contractions were coming every two minutes and I found it really hard to cope with them. A They were about a minute long so that meant I was contracting 50 percent of the time I was in labor. I learned later that a contraction pattern like this is not typical for early labor, and was almost certainly due to the use of cervidil. I tried getting into the shower but it didn't provide any relief. I thought I was such a wimp for not being able to handle the pain. Around 11 pm the nurse gave me a dose of Stadol in my IV. I felt nice and relaxed, for about a minute until the next contraction hit. After that it did nothing for me.
By 1 am I was about 2cm dilated, which was rather disappointing, and had an epidural placed. I wanted to wait longer but I felt like I couldn't cope with the contractions being so close together. It felt like a bolt of lightning went down my right leg when they put it in, and but it seemed to work. I felt myself jump involuntarily, thank goodness that I wasn't injured! At first one side was better than the other but after rolling onto my side it evened out. The contractions were no longer painful but I had severe heartburn with every single one of them. I tried to chew on ice chips for relief, but it didn't work very well. After the nurse left the room and the lights were turned off, I felt a pop and a warm sensation. I was pretty sure my water had just broken. I used the call button and the nurse came back in. I was correct. She checked the fluid, and got me settled again with dry bedding, then left.
After that, my husband and my only support person went to sleep. I was supposed to try to get some sleep too, but I was wide awake. Who could sleep with fire in their throat every two minutes? The husband was snoring, which irritated me. I threw some ice chips at him and growled at him to stop snoring. This, my friends, is why you hire a doula. Trust me, it's worth it. YOU are worth it. After a while I finally asked for something for the heartburn and was given some medication. At 4 am the nurse checked me, and to her surprise and mine, I was fully dilated. Did I want to push? Sure, I wanted to see the baby, why not? No one suggested that I labor down a little until I felt an urge to push. This mistake would lead to hours of pain and frustration.
There were a few decelerations throughout my labor at various times. I was told to quickly roll onto my left side and I did. I didn't think too much of it at the time, had seen similar scenarios when I was in nursing school. His heart rate did come back up with position change. They may have given me oxygen doing one of the decels, but I don't recall for sure.
Around the time that I was entering the second stage of labor, I started having severe pain very low in my abdomen that I felt through the epidural and which did not stop between contractions. They had been giving IV fluids for hours and I had not been up to use the bathroom. The nurse got 700 cc of urine out of my bladder with a catheter. That took care of the pain for the moment. I'm a little fuzzy on the exact timing, but I did start pushing soon afterward. I would guess that it was sometime around 4:30 to 5am. After about an hour I was in a lot of pain. The contractions hurt. A lot. I asked them accusingly, "What happened to my epidural?" They said it was still going. After 2 hours I said "this isn't working, I want you to use forceps." I wanted that child out, it seriously hurt. It hurt to push and it hurt not to push. They reminded me of my birth plan, that I said I didn't want forceps unless the baby was in distress.
I have to give the doctor credit for something, because he stayed with me from about this point on. Not too many obstetricians will spend more than 2 hours with a woman in the second stage of labor, but he did. He had far more empathy than the nurses or anyone else did. My husband was holding one leg when I pushed, and there was a nurse orienting that was holding the other leg. The only problem was, as soon as a contraction was over and I stopped pushing, they would just let my legs go. I was completely numb so I had to reach out and catch my legs with my hands so that they wouldn't hit the side rail. The doctor noticed this and set up the bed so that I could relax my legs in an elevated position without anyone having to hold them. He told them to help me hold my head up when pushing instead. I know stirrups get a bad rap, but since I was numb from the waist down, the leg supports were actually a huge relief. My neck was soooo tired, and having both neck and leg support for pushing helped tremendously. I didn't feel able to advocate for myself during this stage of labor, it was difficult even to speak. When I needed a sip of water after each push, I gestured toward the cup and made a noise. Why did I feel so helpless? In retrospect, I probably should have had them shut off the epidural and let me get out of the bed to push. I couldn't have imagined it at the time though, it was so painful even with it.
There were some good things that happened in the second stage. The hospital staff were very mindful of my birth plan. I got to see the baby's head with a mirror. I got to touch his head and feel his hair. I was really happy about that. It put me in a better frame of mind and gave me some strength to go on. The doctor that cared for me during the second stage of labor was NOT one of the doctors that has recommended the induction, nor was he involved in the process. My primary doctor went off call at 7 am and his partner came in at the end of this chain of events. In retrospect, I think we were lucky that this happened because he was probably the most supportive of vaginal birth of all the doctors in the group. He certainly had a great deal of patience, and a calm, soft spoken demeanor.
After another hour, the doctor looked at my husband and I and said "I don't think this is going to work." We thought he meant that he would need to do a c section, so when he asked if he could cut an episiotomy, it actually sounded good at that point. I was kind of thinking, if that is all you needed to do, why didn't you suggest that already? So he cut. I think he may have cut mediolateral incisions on both sides, but I'm not sure now. Our son entered the world about 15 minutes later, at 8:45 am.
After J.'s head and shoulders were born, the doctor told me to reach down. I think he realized how hard I had worked for this, and wanted to be sure I got the maximum reward for my efforts. I thought the baby was all the way out, but when I took hold of him under his arms and tried to lift him, I realized that he was only delivered to about his waist! Then he slid out and I lifted him onto my chest. I helped dry him gently with blankets and I talked to him. He looked right into my eyes and he didn't cry at all. My husband was a little worried but I knew the baby was fine. I was blissfully unaware of anything else for a few minutes. I do recall the doctor doing fundal massage and me telling the baby that "the doctor is really hurting me right now." A little mild panic in the room over bleeding and "we would like to give pitocin." Ok. I didn't even notice the birth of the placenta, I never saw it. J. had my complete attention. He was here and he was beautiful!
Of course it was a bit hard to look at him while laying flat on my back. But I didn't really notice that at the time. Wasn't our nurse pretty? She's making me look worse. LOL
I opted to allow the nurse to do his routine newborn care on the warmer while the doctor spent about 20 minutes stitching me up, as the process was rather uncomfortable. I was unaware at this time of the benefits of skin to skin care of the newborn. Interrupting this bonding time immediately after birth effects neurological development, breastfeeding, and the development of gut flora in the newborn. I now wonder how our first hours, days, and weeks and beyond might have been different if J. received uninterrupted skin to skin care in his first hours of life.
J.'s first cries came as he was transferred to the warmer. At the time we believed this was a normal part of newborn care. It never occurred to me that new babies should be cared for differently.
8 pounds, 1.5 ounces.
Dressed with hands covered. Eye ointment blurs vision.
I did feel much better, had a chance to change clothing and now sitting upright so I can see the baby better. J. nursed within an hour of his birth.
J.'s daddy holding him for the first time. My husband looks like someone who has also been up all night. Except for the nice, long nap after my water broke, of course.
It's been a long 8 years since this day. It's hard not to look back and think "What if things had been done differently?" We are sporting a few wrinkles and grey hairs. Can we blame him? ;-) Nah, he's too cute. Let's just blame the doctors. It's more fun.
As we moved beyond's J.'s first birthday, we were amazed at some of the skills that we saw developing. He rapidly added new words to his vocabulary, and his articulation was, for the most part, clear and distinct. However, subtle gaps in J.'s development began to slowly emerge. As new parents, some of these were quite difficult to recognize. It is important to note that developmental delays associated with some autistic spectrum diagnoses can be difficult to detect with commonly used developmental screening tools, such as the Denver Developmental Screening Test which our pediatrician uses.
Some early indicators of autism spectrum disorders include: problems with eye contact, orienting to one’s name, joint attention, pretend play, imitation, nonverbal communication, and language development. Most of these indicators were not assessed by out doctor's developmental checklists that we filled out at each visit. Because our son seemed to respond to his name and was actually advanced in language development, we thought there was no reason to be concerned.
During the second year of J.'s life, we took pride in his noteworthy accomplishments, and didn't notice the subtle areas in which his development lagged behind. He began to speak in short sentences by around 15 months. "Open the gate, go see Mommy?" J. began to sing parts of a few simple songs. He could also accurately name almost any shape, clearly articulating the words. Not just square, circle, triangle, but quickly moving on to even more complex shapes, like cross and octagon! He could also accurately name the color of each shape in his shape sorter. At 18 months he could count to 10, and he especially enjoyed counting the stairs as he climbed them. By 20 months J. could sing the entire alphabet song from memory. Before the age of two he learned to recite his address. By two years of age he could accurately name every capital letter, just from playing with his Fridge Phonics magnets. We read the book Ten Wriggly Wiggly Caterpillars, and within a couple weeks he was recognizing and naming the numbers,as well as counting the caterpillars. He appeared to understand the meaning of numbers, to grasp the fact that numbers indicate quantity.
In other ways, however, J.'s development seemed to lag. But there weren't really glaringly obvious red flags, at least not for us as first time parents. For example, J. liked blocks, but if they fell when he was trying to stack them, it was all over. He wanted us to build a tower so that he could knock them down. So I bought him duplo, and bristle blocks. I didn't really think much of it at the time. I believe that my son pointed to show us things, but when we pointed, he looked at our hands instead of what we were pointing at. He forgot to look at us when we would throw a ball to him to catch. There was also no pretend play developing.
My son did make eye contact during social interactions, but only briefly, and his gaze quickly and frequently shifted elsewhere. What we didn't realize then, was how much information is missed when eye contact is not maintained. Neurotypical children learn during the first year of life that the eyes convey important information. We often don't realize how many clues we gather by looking at another person's eyes. For example, most of us realize intuitively that what a person is looking at usually offers a valuable clue about what he or she is thinking. Most of us know, by looking at another person's eyes, in which general direction that person is looking. Most of us are able to use that information to guess what the other person is looking at and thinking about. But this information is often missed by an ASD child, as are subtle, or even fairly obvious mood changes in others. And looking back through a number of photos of J. in the first year or two of life, I saw only one in which J. is gazing directly into the eyes of another person. In that photo, he was less than 2 weeks old.
As my son gradually weaned from the breast to solid foods, our cuddle time seemed to rapidly disappear. He really had very little interest in being held when he was not nursing. He was in constant motion, but he didn't focus on any one thing for very long. My husband liked to refer to his behavior as "constant motion, constant destruction." J. had a real talent for getting into things he shouldn't. All the high spots in our house were filled with items that we needed to place out of reach. It looked like we were preparing for a flood. Even simple things, like the board books, needed to be kept out of reach when we weren't sitting and reading with J. Otherwise, J. would literally eat the books. Quite a few of the board books ended up having large bites taken out of them. The corners apparently were the best part!
When J. was around two years old, we began to enter a stage which I now like to refer to as "playdate disasters." J. absolutely enjoyed getting together with other children, but the visits sometimes were not as enjoyable for his friends. One of the problems we saw appeared to be impulsive behaviors combined with a lack of age appropriate awareness of cause and effect. Several incidents come to mind. The first one involved a set of wooden play food that we had recently acquired. I brought the toys out for him to share with his young friends who had come to visit. They children played nicely for a while, side by side, though not interacting, as I chatted with their mother nearby. Suddenly and without warning, J. picked up a wooden apple (which closely resembled a ball) and threw it at one of the children with all his might, striking his friend in the head. J. had thrown the toy hard enough to leave a "knot" on his friend's head, but he appeared totally dumbfounded by the outcome of his actions. I spoke to my son about the incident and he apologized to the friend when asked. However, within 6 months we had a similar incident, where J. struck the same child in the back with a wooden, toy sword with a great deal of force. This was not an act of anger. J. was equally dumbfounded by his friend's reaction, as he apparently believed that this was the normal, expected use of the toy. Finally, at 3 years of age, J. was playing with a group of children who were chasing each other around with blades of grass, tickling. J. picked up a rock and, when he had caught up with another child, hit the child on the head. He looked shocked when the other child began crying, as if it were totally unexpected. Fortunately, this was the last of these type of incidents, but, needless to say, we found it a bit difficult to find playdates for J. at this point.
The final red flags for an autism spectrum diagnosis were more subtle. A friend or two had pointed out that our son had an unusual manner of speaking during his third year. One suggested that we speak to our pediatrician about it, but was very vague about what it was that she was concerned about. Now that I know more about the speech patterns associated with Aspergers, I would guess that what she was referring to was a rather monotone manner of speaking, with little or no inflection. Since J. also had a rather advanced vocabulary for his age, she might have been referring to a pattern of careful and precise speech that is typical for Asperger's children, earning them the label of "little professor." Whatever it was that she noticed, our pediatrician was apparently not familiar with, because he found no specific problem at that point.
We did notice, that our son had an unusual manner of both asking questions and responding to them. However, since he was our first child, we assumed that this was a part of normal speech development, and were unaware that this signified a problem. If someone asked J. "How are you?", he would respond with some form of repeating the question, such as "How am I?" If J. wanted to ask an adult for something, he would phrase the question in a very odd manner. The most memorable example of this occurred when J. was about 28 months old. I had brought him to a McDonald's with a large play area so he could have a little outdoor time in a safe area. J. had to go down a short flight of steps to get to the play area. He had a tendency to be overly cautious about stairs, so even though he was holding the railing, he also wanted to hold my hand. Except that I was not sitting at the table nearest to the stairs. Another adult was sitting at that table, probably the father of another child. J. looked up at the man, and asked "Do you want to hold Mommy's hand?" Yes, I wished for a hole in the floor to swallow me up, but the man thankfully realized what J. meant, and responded "No, I think you want to hold Mommy's hand." It wasn't until years later that I became aware that these are forms of echolalia, which frequently occurs in toddlers with autism. J. also repeated lines from movies frequently, which is yet another form of echolalia. Verbal autistic children do often echo back what they hear, but it can be and is often delayed so they repeat what they have heard later on and in another context. This is clearly what we saw with our son, but unfortunately did not understand it well enough to bring to the attention of our pediatrician.
To be continued...
Want to see some video clips comparing normally developing infants and toddlers with children with social cognitive deficits, such as autism? Autism Speaks has a wonderful autism video glossary that you can use if you register (for free).
Our oldest son was diagnosed with Asperger Syndrome at the age of 5 years. For me, it was in many ways, a relief. An explanation for what was from the start, a difficult transition into parenting a child. A reason for the problem behaviors that were so hard to work through with our son. An answer to some of the puzzling questions about J.
While the timeline begins to fade from view, there are still many memories that come to mind when thinking back to the first days and months with J., now nearly 8 years of age. He was our first child, and despite my experiences working as a pediatric nurse, often in the Newborn Special Care Unit, the beginning of motherhood was rocky and unfamiliar. My recovery from his birth was painful and it was accompanied by insomnia, anxiety, and difficulties with breastfeeding.
We brought our son home from the hospital about 36 hours after his birth. We could have stayed another night, but I requested an early discharge, thinking that I would be able to sleep better and be more comfortable at home. Sleep problems continued, and breastfeeding was difficult and painful. My doctor prescribed Ambien to help me sleep for the first couple of weeks. I was put on antibiotics about 10 days after J.'s birth for a urinary tract infection. Though my postpartum symptoms gradually improved, the antibiotics I was taking seemed to make my son very irritable. At 2 weeks, my son was still below his birthweight, but only by an ounce. He received his first vaccination at this time, for Hepatitis B. I went to see a lactation consultant to work on breastfeeding, which continued to be painful. The irritability continued, but we were hopeful that things would improve once I had finished the course of antibiotics.
The lactation consultant, a pediatrician whose practice focused solely on breastfeeding medicine, diagnosed thrush as the cause of painful breastfeeding. We supplemented my son with about one bottle of formula per day to help him catch up a little with weight gain, but she was not overly concerned. I pumped while his father fed him the bottle every evening. My son began gaining more quickly, but I noticed that the formula seemed to make him more irritable at night, so we stopped it quickly. Through reading internet sources and speaking with the IBCLC, I quickly became aware that I had far more milk than I needed for my baby. Though my son wanted to nurse constantly and for hours on end, he choked with every letdown, clamped his jaws, pulled and tugged, and had some serious diaper blowouts. He grew rapidly in both length and weight. He continued to be very colicky for the first 4 months or so.
The IBCLC referred to my son as a "Zero to 60 baby." He could go from asleep to screaming bloody murder in about 3 seconds flat. We tried Mylicon. We tried gripe water. Nothing seemed to help much. He also earned the description of "one of those babies that swears." We wanted to practice attachment parenting, but this high need baby was a serious challenge.
There were a few concerns in the early months that, in retrospect, were probably sensory in nature. While my son did seem to have a great enjoyment for music, he certainly seemed to hate the mobile that I had chosen for him, at least at first. When I placed him under the mobile he would scream and look away. When the mobile was detached and he only heard the music, he was more likely to be calm and listen briefly. We also had a "Kick and Play" type gym that he seemed to enjoy occasionally, but he would kick it with so much force that it would quickly slide away from him. One he had teeth, he chewed his toys more like a puppy than a baby. I could not believe the deep gouges that J. could put into a teething toy. I shudder to think of what types of plastic he probably ingested.
As the months passed, J. began to meet some developmental milestones, seemingly in timely fashion. But something didn't seem quite right. He rolled over maybe once or twice by the time he was 6 months old. Generally when placed on the floor, he would flail helplessly like a beetle that was turned onto its back. He would scream until I picked him up. Tummy time seemed like a wonderful way to make him very angry, very fast. But he continued to meet gross and fine motor milestones on target. Sort of. For example, he did go through the motions of crawling, briefly. But what he mainly did was drag himself around on his butt. When he learned to pull himself up and cruise, that was pretty much the end of any attempt at crawling. At 12 1/2 months, he began to walk.
However, speech was a different story. Our son made a lot of sounds very early on. When he was a few months old, a nurse who helped run a mother's group I attended pointed out how my son was very attentive to the conversation. I looked at J., and saw that he was following the conversation around the room, turning his head and fixing his gaze directly on whoever was speaking. I recall taking him for his 4 month checkup. He was babbling away, having a wonderful conversation in baby-talk. The nurse said "He's going to talk early." And she was right. At 7 months, J. uttered his first word. My husband noticed it before I did, but I didn't believe him. Then I saw J. look up at a photograph on the wall of our dog. He said "Kay-ee." My 7 month old son had just said the name of our dog, Katie. And he knew exactly what he was talking about. By 9 months, my son had a half dozen words under his belt, and his speech was quite intelligible.
During the second half of his first year, my son continued to nurse very frequently, though the marathon sessions were slightly less frequent. I started him on some solid foods, mainly preparing my own baby food in batches. We used some organic jarred food occasionally. I tried to introduce a variety of vegetables and fruits. We also made a homemade porridge from brown rice and later added a few types of beans. He liked sweet foods but introducing new foods was very difficult. Being anxious to see him cut back a little on the constant nursing, and not realizing the importance of developing a taste for a variety of foods, I simply mixed the new foods with banana or sweet potato. Things that he already liked hid the new foods. By the time he was a toddler, mealtime was beginning to become a battle. But even with his preferred foods, we noticed some difficulties. As a toddler, J. began to eat preferred foods very rapidly without chewing. Sometimes he would overeat, vomit his entire meal, and then ask for more food.
Speaking of battles, somehow J. missed the memo on naps for babies. While my son slept very well between feedings at night by about 6 months of age, daytime was a whole different matter. In the early months, it was difficult to move him at all once he was asleep. I would nurse him to sleep, then slide him from our bed into his cosleeper, at which point he would immediately awaken. He would scream until I nursed him, yet again. He slept in our bed for a while, and when I caught up on my own sleep, I tried moving him to the cosleeper again. Eventually we worked that out, and we all rested better at night. But I still found the lack of a clear napping pattern to be quite frustrating. He would sleep, but wanted to remain latched on the entire time he was asleep. By the time he was approaching one year, I managed to work in an afternoon nap for J. through a combination of cry-it-out and using a pacifier. Eventually he could be transitioned from breast, to pacifier, to crib. It wasn't an easy feat to accomplish, though. For the record, I no longer believe that crying it out is an answer to sleep problems. At the time, I felt desperate for just a little time to myself, a brief reprieve from the very intense 24-7 of parenting J.
I am a registered nurse and mother of two special needs children. My oldest son was diagnosed with Asperger Syndrome at 5 years of age. My youngest has had multiple health challenges from infancy, including severe food allergies, allergic colitis, failure to thrive, developmental delays, low muscle tone, and plagiocephaly. He has made a great deal of progress and is now an active 5 year old with some underlying low muscle tone issues. I am an advocate of holistic health care, gentle birth, breastfeeding, attachment parenting, green living, and other crunchy things.