Wednesday, January 28, 2009
It took him 20 minutes to accept the bottle and start sucking from it. 20 minutes of him sobbing with a look of "What are you doing to me, Mom?" in his eyes. Then it took him 40 minutes to drink three ounces. We repeated this whole process later in the afternoon.
So let's see. One hour per feeding times seven to eight feedings spread over 24 hours. Hmmm. Anybody got an extra eight hours in their day they can send me? What if eight people just send me an extra hour? Or sixteen send me an extra half hour?
They do get more efficient at this right?
Wednesday, January 21, 2009
Now, anyone that knows me well knows that I love breastfeeding. I'm a big advocate. I have been a card carrying memeber of La Leche Leaugue, and have nursed my babies everywhere, without shame. I've participated in real and virtual nurse-ins, and I nursed my younger daughter until she was two and a half. I've already overcome serious latching problems with Max, and felt that if we could just get the choking under control that we would be home free. I am once again a big, blubbery mess of emotion.
I have absolutely no desire to bottle feed. All the doctors recommend that I pump and thicken the breastmilk and then bottlefeed, since he wasn't having problems drinking a thicker liquid. Their attitude is "He's still getting breatmilk!" But as anyone who has nursed long term can tell you, breastfeeding is not just about the milk production. Its about the convenience of having a ready-made perfect meal anywhere you are. Its about being able to comfort a baby or toddler who's frustrated, overstimulated, or having a bad day. Its about being able to roll over in the middle of the night, lift up your shirt, and latch the baby on, all while being half asleep, then having both of you fall peacefully back asleep.
This week has been all about researching and trying to find a way around the bottlefeeding recommendations. I've contacted a lactation consultant who told me this was way out of her league. I've posted on internet boards, and have had a myriad of opinions thrown at me. I've even emailed back and forth with Jack Newman, arguably the world's expert on breastfeeding. His advice was to continue breastfeeding, and while I'd like nothing more than to throw everyone else's opinions out the window, I can't do it based ont he opinion of one Doctor, over the internet, who hasn't even seen my child.
We saw the pediatrician on Friday. One thing Dr. Newman suggested was a lung function study, to see if there had been lung damage from aspiration. The pediatrician was against that because it would require a CT scan, which is way more radiation than she or we are comfortable with. She offered to consult with a pulmonologist. She called me back later that day to tell me the pulmonologist said the same thing- there was just too great a risk of damage to his lungs from aspiration for us to continue breastfeeding. The last reccomendation is that we go see an ear noe and throat specialist at Primary Children's to have him evaluated, because there's a possibility he may have an undiagnosed cleft palate. In a weird sort of way, I'm actually hoping that this is what's going on, because it would mean that it was something that could get fixed, possibly when he has the other surgery, instead of just a nebulous "oh, he'll grow out of it sometime."
So as soon as the thickener arrives via ups this week, we're set to become a pumping and bottlefeeding family. I have such mixed feelings about this. I know, intellectually, that this is what is best for my son and his health. But the natural mama in me- the part that homebirths, refuses vaccinations, cosleeps and breastfeeds long term, all against the wishes of Doctors- wants to think that the Doctors are blowing everything out of proportion and that we should just keep doing what we are doing.
But the truth is, (and I've only just started to admit this to myself,) Max is miserable nursing. He chokes and coughs almost constantly, and his eyes are always red and watery. There are some times he screams in pain while he's nursing, and there are many times when I think that he's quitting before he's full just because he's so frustrated. Its not fair of me to insist that he continue nursing this way, not if there's an alternative.
So in a few days, we'll be going from this
Our baby boy Max was born with an oddly shaped head. No big deal, we thought. Most babies have oddly shaped heads at birth, especially after being molded during their journey through the birth canal. He also had a nuchal cord, meaning his cord was wrapped around his neck three times, (and no, its not as big of an emergency as those birth shows always make it out to be- our midwife just unwrapped him as he came out,) so we thought that the unusual molding was because he wasn't able to tuck his chin before he was born, so his forehead flattened instead.
By his third day, I started noticing a bony ridge along the middle of his forehead. I thought it was the way the molding was reshaping itself. Still, we weren't worried. By the time he was four weeks old, he still had the ridge along his forehead. We decided it was probably smart to get him into a doctor, just to get things checked out, thinking that the worst thing that we would be told was that he would need one of those skull-shaper type helmets when he got to be a little older.
I took him to a family practice doc here in town. It seemed just like a normal check up at first. Then the Doctor started getting quiet, and looking at Max pretty closely. He started talking with me about things he saw that we concerning, but it wasn't until he mentioned the words "genetic consult" that my heart jumped into my throat. He said he noticed a lot of "soft signs" that may or may not be pointing to a genetic problem, one of which was the ridge along his forehead. He mentioned that Max has closely set eyes, low set ears, a recessed, small chin, and dimples on his shoulders. He also has a dimple at the base of his spine. He basically said that all of these things could add up to something, or it could all just be a coincidence. He couldn't tell me what he thought it might be, or what we should do about it other than get a consult with a geneticist.
I was stunned. A Genetics consult is something you never imagine being referred to with your newborn baby. That's a big scary specialty. Its not like going to see an ear nose and throat doctor, a pediatrician, or even more scary ones like a cardiologist. I heard "geneticist" and immediately thought major handicaps, or a short lifetime filled with health problems. I was a big, slobbery mess for the next few days. All I could do was nurse my baby and think about how perfect I thought he was.
We got a referral to the genetics clinic for the first part of January, but my husband was insitent that we get a second opinion. It felt to both of us that the first Doctor wasn't really sure what he was talking about, and that maybe it wasn't as big of a deal as he was making it out ot be. Tom had received good recommendations for a pediatrician that works is the same building he does. So, a few days before Christmas, we packed up the kids and headed to the Doctor's office.
She was the first to mention the diagnosis of metopic craniosynostosis. And in case you wanted something even harder to say, its also called triganocephaly. http://averycranio.googlepages.com/home is a really good site with explanations, diagrams, and a story of a little boy who has the same condition. Apparently, metopic craniosynostosis is quite rare, in fact, our pediatrician had never seen a case of it. She had to get a textbook out to show us what it was and to read to us about it.
(As a sidenote, we do "rare" really well here at our house. I have pseudotumor cerebri- a neurological condition that affect 1 in 100,00 people. I had a baby in a car, which happens once in avery 300-400 births. And metopic craniosynostosis occurs in one in about 40,000 births. If only we could take these odds and play them in Vegas!)
She also advised us to proceed with the genetics consult. Along with that, she ordered a sacral ultrasound to see whether or not the dimple was closed and to rule out spinal cord tethering, and an xray to confirm the craniosynostosis. Since we had to head down to Primary Childrens Hospital, we were glad to get all of the appointments on the same day.
The first piece of good news for that day was that the sacral dimple was closed and there was no spinal cord tethering. Big sigh of relief there- an open dimple could have meant more surgery, spina bifida, or other neuro-muscular problems. We then went for the x-ray. Everyone was very kind, and we were done quickly with a minimum amount of fuss. Then it was on to the genetics lab. We talked with a resident first, and the most amusing thing about the whole appointment was how appalled she was at pictures of Max's birth. (They ask you to bring in pictures so they can see the development of the child they are examining.) I brought a full body shot of when he was first born, and his umbilical cord was still attached to him, and to his placenta. She was considerably disturbed by this- telling mye about all the dangers of increased hematocrit levels. I smiled to myself, told her that there was no study that showed increased risk of polycythemia (and felt very smart saying that word out loud.)
The geneticist was quite kind and knowledgable. The good news was that he didn't feel that the craniosynostosis was related to any of the scarier syndromes that it is sometimes a marker for. He said that there were some things about Max that may or may not be markers for something genetic, but right now, he's thinking that they are mostly related to the skull bones fusing prematurely, and that many of those issues may be resolved with surgery. Max is gaining weight really well- in fact, he has doubled his birthweight in 2 months!- and that is a big sign that htings are going okay. The words the doc used were "cautiously optimistic." I can deal with that. He referred us to the cranio-facial surgeons, and as long as Max keeps doing well and meeting his milestones, we don't have to go back until Max in nine months old.
So the next step is surgery. Sigh. I can't meet with the craniofacial surgeon for a couple of weeks, so we don't know for sure when it will happen, but we know it needs to happen. Its a fairly involved procedure, and requires a minimum 5-day hospital stay, and they like to do it before the baby is six months old so that their brain can continue to grow. It seems overwhelming to me- the idea of putting my infant through a major surgery that involves a neurosurgeon and a craniofacial surgeon. Everyone keeps reassuring me that he'll bounce back fast, and that the surgeons do wonderful work, but I keep thinking of things like giving my baby to the nurses to take to the operating room, shaving his little head for the operation etc. Must not think about it too much...
Saturday, January 17, 2009
(Either that, or you can stop putting all that effort into creative, varied and nutritionally balanced meals, knowing that they would be just as happy with hot dogs and pasta-roni.)
Thursday, January 15, 2009
Tuesday, January 13, 2009
I'm not even sure what form this blog will take. Some of my friends have blogs devoted to birth related topics. I'm sure I'll do some of that. Some friends have blogs devoted to their kids, or all about Suzuki violin, or filled with pictures of the grand happenings of their family. I might do some of that. What I can guarantee won't be here is pictures of my scrapbook pages, (I don't scrapbook,) descriptions of parties held for every conceivable occasion, (I'm not that great at celebrating holidays, and I don't take nearly as many pictures as I should,) or pictures of my spotlessly clean and decorated house. (Yeah, my house is never spotless, and unless I suddenly win a visit from an HGTV design team, it won't be perfectly decorated any time soon.) So what will be here? Who knows. I'll probably be surprised too.
So who am I? First, I'm a wife and a mom. I have my husband, Tom, 7 year old Abby, 5 year old Ashlynn, and 2 month old Max. I love my kids dearly, and being their mom comes with all the usual chaos and busy-ness that you would expect. Some days I feel like I've got a handle on the mom thing, other days I wonder what I got myself into. (Hence the blog title- What did I think was going to happen when I had three kids?) I'm a doula, and although I'm not attending births right now, (a nursing 2 month old makes the on-call life a little hard) its still a big part of who I am. I'm passionate about all things relating to pregnancy, birth, and breastfeeding, and never met a book about any of those topics that I didn't have to read! I'm also a Suzuki violin teacher and love being able to work with my violin students one on one to help them discover music making. Drop in my house any given morning or afternoon and you're likely to hear violin music of some kind.
So there ya go. Enjoy, comment, commiserate, whatever you feel like doing. Its going to be a fun ride.