Speaking Out on Motherhood

Jennifer,



All now having been said...I think that it would be great for us to be able to share about our children. We each have unique perspectives that I believe are relevant.



I would be interested in hearing about your experiences raising twins...that CAN'T be easy...although I imagine it is double the joy!



My first two are 15 months apart... my son was 6 months old when I found out I was pregnant again. After I got over my initial surprise, I was overjoyed. It wasn't always easy having two in diapers, etc...but I didn't mind. I would walk down the street and people would say.."you've got your hands full" and I smiled with pride...and didn't feel overwhelmed...Of course, now, if someone said that, I would probably say "Yes, help!!". My youngest, now 18 months is my little cutie...and he knows it...plays it for all it's worth...



I hope we can call it a truce!!



Kristen

This is my mother story (tale of woe?):



My son was born a healthy, happy baby. At seven months he fell off the bed onto a plush carpet. He had a blood vessel rupture in his third ventricle and a clot started. Hydrocephalus resulted. The neurosurgeon and everyone else thought it was unusual in that they had never seen something so benign cause such a huge problem. They made sure we hadn't abused him (xrays and retina tests) and did MRIs to make sure he wouldn't have aneurysms every time he fell!



He had an emergency shunt placement after he started having seizures in my arms. His head swelled up in a matter of half an hour - his eyes began to bulge out and he lost his temples. It was scary seeing him scream in pain and being helpless to help my baby.



No brain damage resulted.



Next, I found out months later I was having TWINS. My pregnancy was awful. I had twin to twin transfusion syndrome and we really thought baby B wouldn't make it. I had already given baby A a name (Madeline) and I felt terrible that this little squirmy baby might not live and I hadn't even given her a name. I prayed really hard to be able to raise both my girls. After that, I felt like everything would be OK and the name Zoe popped into my head. I thought "What an odd name, why would I name my child that?" Then, I looked it up and discovered that Zoe means "life".



After I developed pre-eclampsia, labor was induced early. The girls were in the NICU for two weeks and I managed to give them a constant supply of breastmilk. For the first few months Zoe had one problem after another (usually with feeding).



In the middle of all of this, my son went berserk. I thought I was going to have to send him to a psychiatrist! Instead, an MRI showed cerebellar tonsular herniation. The change in pressure in his head from the shunt that had saved his life had now caused part of his brain to be pushed out under the skull. It's complicated so I won't be more detailed, but Alex is one of only a handful of children who have had this happen.



Two more surgeries were performed to take the shunt out. As luck would have it, the hydrocephalus had cleared up, but now he has an unusual presentation of an Arnold-Chiari Malformation. He has problems swallowing, so he drools, he gets really dizzy, and he has headaches.

But, he is smart, talented, and able to live a normal life. An MRI wednesday will tell us more.



My kids are now 3, 16mos, and ditto. They are like a herd of baby dolls with attitude. I love them more than life itself and have discovered through all of these horror stories that 1) kids are incredibly strong, 2) I am grateful that I have a "forever family" (this means I and others in my religion believe that even death cannot seperate us from our loved ones for long), and 3) I am as stubborn as a mule.



I would like to hear more about your kids. I had three in diapers at once and did not enjoy it. We should've had a party when my son FINALLY was potty trained. My husband and I always here "You must have your hands full!" In fact, it seems like a mantra everyone must repeat. It really amuses me that I usually know what people are going to say and can practically mouth the line along with them when they say it! Anyway, this is long and my husband has anounced the computer is now his.



Jennifer

Wow, Jennifer, that must be really hard for you. You are one strong woman! What will they be looking for in the MRI? Do they have any way to control his headaches? You have a real story to share with other parents...because things like your son falling off of the bed...they happen! What is unfortunate is that the medical staff placed you under such suspicion!



My story pales in comparison to yours, I am afraid, but I will share it nonetheless.



I met my husband in Germany as an exchange student (he was a german medical student). I was doing a prakticum in the hospital on the unit with him..and we hated each other!!! Well, 6 1/2 years of marriage, 6 years of residency, three countries and three children later...we are still together!



Our first child was born in Germany in a small hospital. After 48 hours of unsuccessful labor and having only dilated to 1 cm despite every possible intervention, my 9 lb 4 oz son was delivered via caserean. He was a healthy baby and once I got out of the hospital (and I have to tell you, giving birth in a german hospital could take up an entire messageboard!) I threw myself into being a mom. It took me months though to feel like I wasn't the babysitter though. I just couldn't believe that I was a mommy...



When Andrew was 7 mo old, we moved from Germany to Northern Ireland. My husband did a year of residency there to prepare for the US by learning English. It must have been the air? but when Andrew was only 9 mo old, I found out that I was pregnant again. I went through a lot of mixed emotions this time...feeling guilty for going through them. My pregnancy was very stressful..my father left my mother and then made himself totally unavailable to me and my mom was very depressed, of course. I was in a foreign country with a husband doing his internship all over again and I was feeling depressed myself. Amanda-Fionnuala was born in Craigavon, Northern Ireland and was a VBAC...I was thrilled! After I returned home, I had to set about packing up the house because we were moving to the US. Thomas was busy with work and so I was alone responsible for moving the household...and caring for a newborn and a toddler. After we moved to the US I felt very isolated...and depressed. I went through an incredible post-partum depression but at the time I didn't know it. I thought that maybe I needed to get out more or something and enrolled in a University course...but nothing helped. It took me over a year before I finally went for help and by that time I was suffering from anaxiety attacks, depression, etc...I still feel very guilty about this especially when my daughter acts out...because I worry about how this affected our bonding!



My youngest was born in the US. One week before he was born, I got the feeling that something wasn't right and I called the midwife and went in for a visit, but everyone told me that nothing was wrong. I eventually went into labor and still "felt" that something had changed about my pregnancy. When my membranes ruptured the water was green..from meconium. It had apparently happened several days prior (hmmm) and Alex had meconium in his trachea and lungs. He had to be suctioned, etc. Some moron didn't clamp the cord properly and he lost too much blood and had to be infused through his little belly button...he was in the NICU for 4 days with bradycardia etc. In the meantime, I had hemmorhaged post-partum and was taken to the OR for emergency surgery...it was such a mess. After all of this was said and done, I, too, insisted on nursing Alex in the NICU..but the nurses there weren't too friendly about the idea. They were constantly questioning the "amount" that he was getting insisting that he be "topped off" with a bottle...it was pretty infuriating.



He is now a healthy 18 month old. But we also had an incident where my husband was cleaning out the fridge with that clorox gel cleaner...alex took the bottle while my husband was scrubbing and drank some. We spent the night in the hospital and he had to be scoped to make sure that he had no burns...and in the state of Florida, an ingestion is a reportable offense...so we had to prove that we had not been negligent...and that was really discouraging. As a parent, you do your best and then when something does accidently go wrong, you are forced to defend yourself...



Well, I have rambled on long enough...hope to hear from you soon,



Kris

I'm interested in if your husband spoke English when you met him. Were you fluent in German? My husband's maternal side is all from Mexico. Most of them don't speak Engish and I don't speak espaniol. I feel really dumb when I go to family get togethers. My mother in law takes pity on me and acts as translator but inevitably the conversation gets fast and I get lost. Oh well! I guess I'd better learn! Is your husband homesick? We leave for a month in San Antonio on Saturday. That place is all Spanish and German. I guess I get to feel doubly dumb! (My son speaks more Spanish than me and my mom and sister speak German. My aunt Bridgette is from Berlin).



I felt like it was a real fight to have a say in my daughters' medical care in the NICU. They obviously were trying to do their best, but I knew when it was time for them to come home. The girls kind of hit a plateau and it was obvious they needed something more to progress. I had a hard time convincing the nurses to let me breastfeed. They encouraged me to pump breastmilk (even insisted) but they wanted to give it to them NG tube or bottle. They would hover around me saying they didn't want me to wear the babies out. I also had nurses that would "sneak" in bottle feedings before I arrived at the hospital to breastfeed! I had a hard time bonding with my daughters and I think being made to feel like a nuisance rather than their mother contributed.



I know what you mean about anxiety attacks. Mine started in college and got worse a couple of years ago (before they "disappeared"). I didn't like drugs and I hated my psychiatrist - he really didn't seem to care! I had to mentally fight the irrational thoughts and emotions. Kind of like conquering a fear of heights, I had to go and do the things that I felt anxiety about. But they were awful, I'd feel like the house was just collapsing around me, the floor was caving in, and I was being swallowed up! I still have little pangs occasionally, but I ignore them as best I can and they go away.



That's pretty scary that you could've been in major legal trouble over that mistake. I have friends who have thought everything was out of reach, only to realize it wasn't or forget to put something away. My daughter once tried to eat a bug that I think was killed by insecticide! I think that in my case the hospital did have a reason to be suspicious. My son suffered major head trauma that even the neurosurgeon couldn't explain. And our explanation was so simple and unlikely to cause such damage. I wasn't surprised after my parents sat me down and told me the hospital staff was suspicious and why. It was unnerving to be woken up at 3 am with my son and taken to have his entire body xrayed, but I felt that I needed to be very "obedient" so they wouldn't find me annoying and jump to conclusions because they disliked me.



With my son's other surgeries I was very pushy. I had become very knowledgable of his situation and most nurses and quite a few doctors say Arnold-Chiari who? or How do you catch it? So, my son's pediatric neurosurgeon has me labeled as a control freak, but I don't care because he is REALLY good.



The MRI tomorrow is to check the Arnold Chiari Malformation. The theory was that if the shunt were removed (since it seemed to cause the ACM directly or indirectly) then the ACM might correct itself (the brain would "suck" back up). This has happened in a very few other children, but not mine of course. His ACM is still there! His ped nsg has this as his research project and has told us he won't charge for visits if we can't afford it and he wants to keep up with Alex for his life - even if his ACM subsides. I find the man personally obnoxious but he really cares for my son and my son likes him a bunch and he knows what he's talking about to some extent. You see, this is all new territory. If you look up ACM it is supposed to be congenital and doesn't "go away" its also supposedly caused by skull malformations - not pressure changes. The definition is changing from the textbooks as more people acquire this through head trauma, encephilitis, etc. Anyway, it's really interesting if you know someone with it, I imagine it's boring otherwise, sorry.



Alex's headaches are either going away or he's getting used to them. His vomiting has stopped. His choking has stopped. His drooling is lessening. I hope this means improvement on the MRI.



I'm so sorry you felt isolated and depressed when you moved back. Did you leave behind a lot of friends in Europe? I know from experience that some cities or neighborhoods can be a lot more snobbish and unfriendly than others. I hope that you didn't end up in one of these places. If you would like , you may speak to me privately anytime. I'll send you an email so you'll have my address.



Jennifer

My husband spoke very little German when we met...I speak fluent german, so we still continue to speak german in the home.



I know what you mean about the NICU...it was almost as if THEY owned my baby and I was the pain-in-the-butt mother that wouldn't give them 100% control. I felt so badly for the moms who had to spend months there. I asked them to call me to nurse anytime day and night. I was recovering from the surgery and my hemoglobin was 7.1 so I wasn't supposed to get up without assistance and was supposed to go anywhere unless in a wheelchair. To make matters totally inconvenient, the NICU was on the other side of a large hospital...no doubt to keep the new mommys away!! I couldn't get hospital transport to pick me up to take me over and ended up just walking over the best that I could. It was miserable, it really was. I can empathize with you. If I had had to do it for 2 weeks...yipes!



In terms of anxiety attacks, I too find that when I face them they eventually get better...someday we'll have to discuss it....



Please let me know what happens at the MRI tomorrow...I will be thinking of you both and looking for a post....



Good luck on your vacation. I got your email and will write when I get a chance.



Kris

One time when I was visiting the NICU, my mother dropped me off and went to park the car. I sat in the wheelchair (too weak so I had to be wheeled around). Two security guards approached me and asked if I was in labor. I said, "No, I just gave birth to twins and they are in the NICU." Then this guard turned to his partner and said, "In the old days women just gave birth and kept working in the fields." (With the tone in his voice and with him pointing to the wheelchair, I took this as a derogatory comment that I was being pampered or lazy). I said, "In the old days I and both my babies would be dead." That shut him up. (Apparently he hadn't heard me say they were in the NICU. And he didn't know that I had been toxemic and recovering from lots of drugs - antiseizure drugs are AWFUL.)



Jennifer

You are KIDDING! People can be so $%& opiniated ..tee hee!!



No, seriously, that is unbelievable.







Why Women can't win!



1. If you deliver via cesarean you have failed in the birthing process. I was actually told by a family friend after Andrew's birth "OH, you don't know what it is like to REALLY give birth.." and she believed it..and so did I.



2. If you have delivered vaginally with an epidural/pain medications you have "failed" to do it "right". Ever been asked if you had an epidural during delivery and then have a disappointed listener say "Oh", dismissing your birth as being not such a big deal anymore?



3. If you deliver vaginally with no pain meds you are a crazy radical.



4. If you take some time to recuperate, you are being a bit lazy.(Mother-in-law and security guards included)



5. If you are up and about immediately, you are not following dr's orders.(walking to the NICU after surgery)



6. If you choose not to breastfeed you are a bad mother (In Germany, I saw a mother of 3 reduced to tears by the midwives for deciding not to nurse)



7. If you choose to breastfeed you should only do so for 6 months. (Pediatrician opinion)



8. If you breastfeed longer than 6 months then you are an extremist. (My dad would disown me if he knew I was still nursing Alex...)



9. Choose to be a stay-at-home mom: many think that this chose you..i.e you have "fluff" for brains.



10. Choose to go to work part-time: stay-at-home moms don't accept you as a stay-at-home and working moms question your dedications.



11. Choose to work full-time: Listen to "why did you even have children?"



I could go on and on with my cynisim and sarcasm!



I guess I will have to think up some good parenting ones!



I guess we have to grow to trust our own judgements and decisions as being right for us and respect other people for theirs....



I think the security guards were absolutely rude though...it is great that you had the ability to tell them off...I am working towards getting to that point. I used to be pretty weak about that kind of stuff, but am getting better.



When one of my professors who has promised me some sort of funding for a year told me recently that he was going to fund me, I looked him square in the eyes and said "I won't hold my breath". My mom had a "cow" about it..."how could you?!" but I have to tell you, it does feel great to just speak up, doesn't it!



Hey, what happened at the MRI? I hope things went well.



Kristen
Edited by kmmath  at: 7/27/00 9:55:02 am

We don't know what's going on with it. The MRI itself went smoothly (this is his fifth I think) yesterday. I got stopped in the hall by his ped nsg and he went ahead and answered all of my questions and did a neuro exam on Alex. I feel like we live at that hospital - I'm so comfy there!



This little "visit" gave my husband new ammo to tease me with. He is VERY jealous of this nsg and is eternally implying we might have some "thing". He does it as teasing, but I really hope he doesn't believe it. The doc is cute, but my doc (Jon) is much more important to me (and cute).



Anyway, I'll call the nsg tomorrow to know the results. Fingers crossed.



Jennifer

Do they have to sedate small children to do an MRI? I can imagine it would be frightening for them. How does Alex do with it?



I hope all will be well. Does Alex have to face any more surgeries? That little guy has been through a lot.



Kris

All small children have to be completely sedated for an MRI. It's just too loud and scary. Alex never has been very good about going to sleep. This time they knocked him out pretty smoothly.



I've been in ped recovery from surgery a lot. There is a pattern all kids go through. First, they make this weird, choking cry (scream). They cry because it is scary, their in pain, etc. They choke because of the intubation tube having been in during surgery. Alex always blows everyone away with his violent reaction to waking up. He pulls his IV out, kicks, bites. Awful! Sedation for MRI for most kids is much different. Alex reacts to it all the same way, though (minus the intubation). But this time he woke up like a funny little drunk. Much easier to handle and much nicer for him.



I haven't a clue as to what Alex faces. He could have his brain return to normal, it could stay the way it is now forever with little side effects, or it could get worse. If it gets worse and he starts having apnea, aspiration, and extreme pain, then he gets a decompression surgery. From what I've heard it is HIGHLY invasive and a procedure to avoid unless absolutely necessary.



I've had a lot of people ask me what will happen with Alex. Since he has had so many abnormal things happen, I have learned to not expect anything and just accept what happens. It's not easy, but it beats killing myself on an emotional rollercoaster. The only hard part for Alex (who just thinks he has a nifty head that everyone wants "pictures" of) is if it hurts or if the symptoms embarrass him. The hurting has stopped, as have the other symptoms.



Alex is amazing. I think most kids are, though. The day after brain surgery he was playing with a toddler who had just had open heart surgery. They were running!



By the way, Disney world looked fun. Was it hard with the youngest? I hesitate to do "fun" things like that because I don't think it'll be fun for the younger kids, and then they'll want naps, and bottles, etc. How did you manage? We want to go to Sea World and other tourist traps and I don't know how to do it with little teeny kids.



Jennifer

Poor Alex, he has been through a lot. That must be hard as a mom to see him go through!! I hope that he will continue to improve...



I actually have a similar reaction to coming out of anaesthesia until I am coherant...it is kind of embarassing. I know how he feels.



Keep me updated on what happens.



Oh...when are you guys going on your trip?



Kris

We leave tomorrow (Sunday) bright and early! Jon's bringing the lap top because he has some presentations (his research and such) to make while we're there so I'll still be "plugged in".



Jennifer

That is wonderful...you must be so relieved! I hpe that he will continue to improve.



Will he have to keep having the MRI's annually or will he be granted a reprieve? Does this mean that the ACM has corrected itself?



Kris

The latest MRI showed a very little abnormality. Something to monitor yearly, but nothing to worry about as long as his symptoms are gone! I am very happy.



Jennifer

Alex will have to be monitored with an MRI every year. We will have to watch out for symptoms recurring. His ACM still exists, but very small and producing no visible symptoms. We are optimistic to say the least (I mean this is nothing compared to the fears that he would have severe brain damage or be dead)! So, for all intents and purposes, Alex is "normal". Just has a little something to monitor.

Hallellujah (did I spell that right?)



Jennifer